grief in the dementia patient

  • You cannot open a new topic into this forum
  • Guests cannot post into this forum
  • This topic isLOCKED by administrators or moderators

normal grief in the dementia patient

Previous post - Next post | Parent - Children.1 .2 .3 .4 .5 .6 .7 .8 .9 .10 .11 .12 .13 .14 .15 .16 .17 .18 .19 .20 .21 .22 |

Just popping in
Joined:
2005/10/25
Posts: 2
Hello everyone. After desperately searching the internet for some type of advice, I stumbled upon this forum. I have a situation with my father that is heart breaking and wearing me down and I hope someone can offer some type of advice on how to handle this.

My mother passed away one week ago. She had been deteriorating for quite a few years, physically and mentally. She was my mother and my very best friend, but in recent years our relationship was changed...perhaps changed isn't the right word...more altered, due to the dementia. She and my dad were married for 64 years. My Dad is 86 years old, and has recently had some health problems including having a pacemaker implanted, and what seems to be the onset of dementia. He seems to be mentally deteriorating rather quickly.

The main problem is this...he can not remember that my mother has died. Just when we think he has remembered and accepted (as best as can be expected at this point), he'll then look at me and ask when mom is coming home from the hospital, or how she is etc. I have watched him crumble so many times this past week like this is the first time he has heard this. It's killing me and my brother...and I can't even imagine how it's hurting him.

My dad lives just a couple miles away from me and my brother. He has a 24/7 caregiver that we originally hired for my mother...mom only lasted 2 days there with her before she died. My dad insists he doesn't need her there, but we know he does. He can not even remember to take his medications or to eat half the time. She is an angel who cooks, cleans, does the laundry and keeps him occupied and distracted. She truly cares. My brother and I are over there at some point every day...yet I feel guilty about not having him come live with me, in spite of my tiny ranch house. Even if I did that I would have to have care for him, as I can not be home all the time between working and child care for my nephew's baby.

It seems I've gotten off the track, haven't I? Anyway, I'm so worried about my dad and I'm not sure how is the best way to respond or handle his forgetting about mom's passing. Has anyone else ever encountered this?

I appreciate you taking the time to read this jumbled message. I'm afraid I'm not thinking very clearly quite yet.

Thanks,
Loret


Posted on 2005/10/25 8:30




normal Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Dear Loret:
I am so sorry for your mother's passing, Loret. Please accept my most heartfelt condolences. It's so hard when one of our parents dies and we are left coping with our grief while we are caring for our other parent. All I can say is that it sounds like you are a wonderfully caring daughter - and caregiver.
Regarding your father's dementia, I'm glad that you have retained the caregiver that you had to now care for your father. Most times our elderly parents will say that they are just fine and can manage okay, but when a person has dementia, rarely are they okay and capable of caring for themselves. You asked whether anyone else has ever encountered the issues you describe where your father forgets that your mother has died because of his dementia. I can say without hesitation that this happens more times than not, when a person has some sort of memory impairment. I think that one way of helping your father through those times that he does remember, is to respond to whatever his feeling is at the moment - if he is sad, simply be there for him, offer love and reassurance that you and your other family members will be there for him in the days, months and years to come. He will probably continue these cycles of forgetting and needing to ask where your mother is - and I think that those time are even harder on us sometimes - and simply responding in a way that reassures him and comforts him at that moment is the best that you can do.

I will try to continue my reply back to your note soon, but in the meantime, please take care of yourself while you are caring for everyone else!
With most sincere condolences for your grief -
Barb Davis


Posted on 2005/10/25 10:49




normal Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Just popping in
Joined:
2005/10/25
Posts: 2
Dear Barb,

Thank you so much for your reply and advice. I felt so desperate when I wrote my message this morning, then I felt rather foolish after. I can't tell you how much it meant to me to read your compassionate reply. I know there is no easy answer, but it helps to know that others have had the same experiences and understand.

I look forward to spending more time exploring this site, and I hope we can communicate again. It's been a long day, so please forgive me for this short reply. It seems I feel so exhausted these days. Perhaps it's partially because I've been so consumed with worry about my father, I haven't really had the chance to confront my own grief. But Dad is my first concern right now...all in due time.

Thank you again,
Loret


Posted on 2005/10/25 22:13




normal Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Dear Loret -
Just wanted to say that although you are probably more than busy these days, caring for your Dad and family and all, that I hope that you can take some time for yourself, too! I know that it's incredibly hard sometimes to just take an hour or so for yourself - kind of like recharging your battery - but that it's really important to do just that!!! Remember - you can't give what you don't have, so by doing some relaxing things for yourself, you are actually caring for those you love!
My thoughts, too, are for your father . . . there is much information in the Alzheimer's Assoc. website, www.alz.org that you may find helpful. Even though your father may not have AD, the information available in their website is appropriate for persons with various types of dementia. Please let us know when you can, how things are coming along and if we can help with anything else in the days and months ahead . . .
Please take care, Loret!
Barb Davis


Posted on 2005/11/9 19:59


_________________


DebbieB 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
My mother passed last November and my Dad has early stage dementia. After 4 months he seemed to forgot she had passed away as well and started asking about her and looking for her. Two days ago a nurse from an Assisted Living Facility with a dementia wing met with us to evaluate him. She asked he was getting counseling from Hospice and he said that he had refused their offers. She told us that he is depressed and that he should accept the offer, that it will help him to have someone to talk to about my mother. I can't tell you how much it helped him to be able to have someone to talk to about it.
The other common thread is we are being told he needs a pacemaker. I have been hesitant to agree because he is deteriorating and my brother and I are not sure it would be humane to artificially prolong his life. I did some research and found a study that showed that 32% of patients over the age of 80 who have pacemakers installed develop dementia! The statistics on this group were very sobering and I will do more research on it.
It is really horrible to have to break the bad news over and over. I share you frustration and pain!


Posted on 2008/5/1 14:31




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Webmaster
Joined:
2003/4/26
From: Dallas
Posts: 262
Indeed, the understanding of dementia patients is such that they - as you have learned - often cannot hold losses in their memories. As it is so traumatizing to love ones to have be told of the loss over and over again, it may be worth just telling a loved one a beneficial lie. It is one thing to be dishonest with a loved one because we are trying to protect them from facing hard truths. It is not lying if one has been honest, is not trying to withhold information, and because of the organic lack of capacity, a loved one cannot understand. In such circumstances, it truly is a mercy.

Regarding a pacemaker, as we have mentioned elsewhere, your concerns are well-placed and appropriate. My Dad died two-weeks ago. I would not have wanted a pacemaker placed in him anytime within the past two to three years. It would have only prolonged his agony. He went with his family around him and with love present in his life. As I said in the other post, that's just my values. It very likely will not fit others.

We will keep you in our thoughts and prayers.

Mike D.


Posted on 2008/5/14 22:45




Exhausted 

none Re: grief in the dementia patient

My Dad is ONLY 64 years old. He had a blood clot in his brain 4 years ago and ever since then he has had some troubles. He was still working up until this past Feb. And was managing (we are thought). He would come home from work and eat and go to sleep. He would sleep all weekend. He never wanted to socialize. He was beginning to have some trouble with familiar tasks at work.

One day in February he had a terrible car wreck 40 miles away from his workplace. He had no idea where he was. He has since been given a diagnosis of moderate vascular dementia. I have had to put him in an assisted living facility due to the fact that my Mom is dealing with ovarian cancer and can not take care of him. I am an only child. I'm 44 and have a 4 year old child. There is no way I can bring my Dad into my home and take care of him.

My Mom is staying with her sister while she is finishing up with chemotherapy. She is actually doing great and her test results are coming back great. Of course she is upset about my Dad but she has expressed to me that she has been taking care of him for a long time and can't do it anymore.

So with all of that said, my Dad is in the early stages. He is still very sharp at times but I have go through the same stories over and over. I don't think he will ever leave the assisted living facility even though he thinks he will. I am so guilt ridden that I am doing the wrong thing but I really don't have any other choice.

I'm totally exhausted with dealing with all of the wreck stuff, auto insurance, medical insurance, legal stuff that I'm about to go insane. I work full time and I can barely keep up with my parents stuff and my own family. I know I'm venting but I'm scared, full of guilt that I'm taking my Dad's life away. The dementia is so tricky. I have to believe the doctors know what they are doing but I'm so confused. I have also read in many places that vascular dementia can have a pretty short life expectancy after it is diagnosed.

Thanks for just listening out there. If anyone, can give me ANY advice about understanding dementia it is greatly appreciated. Of course, I have read a ton about it but it is so tricky.


Posted on 2008/6/2 21:20




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Webmaster
Joined:
2003/4/26
From: Dallas
Posts: 262
Hi, Exhausted:

Welcome to ElderHope.

IT's sad to hear all that you and your parents have been going through and I cannot begin to imagine how hard this must all be (well, I can imagine but cannot begin to understand - perhaps that's a better way to say it). IN any case, I will forward your post on to ElderHope's resident expert in dementia (and she is an expert - working in the Alzheimer's Disease Center at UT Southwestern Medical Center at Dallas). In any case, we're happy to listen and she can answer questions.

We'll send lots of good thoughts and prayers in your direction.

Mike D.


Posted on 2008/6/3 7:27




none Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
I am so sorry for all that you and your family are going through right now . . . there are so many issues that you are struggling with and I'm not sure how well I can address them here, but I will try.
To begin with, have you contacted the Alzheimer's association in your area? It may sound like I'm not really addressing your concerns but they really do have wealth of information on how to cope with many of the issues that you have - even if your father does have a diagnosis of vascular dementia. Please see www.alz.org for their website for information about support in your area.

You may want to seek another opinion on his diagnosis from a neurologist to see if this may be Alzheimer's disease with a vascular component which is not unusual for the elderly. Hopefully, he is or will be prescribed the meds for AD to help with symptoms of AD - these meds would be donepezil and memantine, usually.

And, vascular dementia generally progresses differently from AD becuase the cause of the memory problems is coming from vascular issues and not so much from the plaques and tangles that are related to Alzheimer's disease. HOwever, the course of the disease is not necessarily shorter - unless a person has a stroke or another acute vascular related event . . . it is all very confusing and that's why it's good to talk with a neurologist or a doctor who is very experienced with AD and vascular dementia.

Lastly, your guilt that you mentioned is so very understandable and so very common among caregivers . . . just please remember that you ARE giving your father the best care right now by having him at an Assisted Living center where the staff is trained to care for persons with dementia. You may want to check out caregiver support groups in your area (again, check the Alzheimer's Assoc.) where you can talk with others who may have already been through some of your struggles and suggest ways of coping.

Lastly, please let me know if I can assist with more information - I do work at UT Southwestern's Memory Research Unit and would try to address any specific concern relating to Alzheimer's Disease as possible. However, I know that there are many other ElderHope member caregivers who have coped with Alzheimer's disease issues with their loved ones - they really are the experts and I do hope that someone is able to share some of their thoughts too . . . .

In the meantime, please take care -
Barb Davis


Posted on 2008/6/4 10:13




Exhausted 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
Well, I finally am just now getting back and reading some replies. Thank you!! I stay on the move dealing with all of this. I think the time has come for me to try to relax a bit and listen to GOD instruct me. I think this is all God's plan. You see, my Dad is a good man but has dealt with the "weekend" alcoholic problem. Seems like a lot of people have this problem. The doctors believe that alot of the vascular dementia is actually coming from extreme drinking. My Mom just couldn't take care of him anymore. Maybe just maybe God wanted to stop the madness and this was the way to do it. The only way. My Mom is doing good with her treatments for the ovarian cancer. It is as if she is a free person these days. Of course, the guilt I am dealing with is so extreme but it stems back from having a father that loved me but chose to drink instead of dealing with things. So I have spilled my guts out to the world here but any words of healing are welcome.

Also, my Dad seems to be sharp these days at least when I call or visit him and that is where my doubt and guilt come into play. But, who knows what he deals with when I'm not around. Does anyone out there deal with this?


Posted on 2008/6/7 22:03




Exhausted 

none Re: grief in the dementia patient

Thank you for your kind words. I guess I just feel like I am taking my Dad's life away from him but really I'm just trying to keep him and other safe. The wreck he had could have been so much more tragic.

I guess the fact that my Dad is not screaming and causing a scene to get out of the assisted living facility may be a major clue that he either knows something is not right and he needs to be there or he is just settling in. I keep praying for his mind to just settle in and just accept it as his new life and home.

It seems also that his diabetes is changing. He is now on insulin shots compared to a pill. I have a feeling that his physical health is going down hill and that will get him before his mental health problems will. I just get the gut feeling that he will not be alive but a few more years. Oh... this is just so hard.

I'm so glad I found this forum.

Exhausted but trying to relax a bit.


Posted on 2008/6/7 22:13




none Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Dear Exhausted,
Just read your message and I can only guess how hard this time must be for you and your family . . . I do understand about your concerns about your Dad settling in and about feeling that being in the assisted living facility is "taking life away from him." He probably is adjusting more now to living there, although he may still have days when he just wants to go home. This is a big change for him and it may take time to adjust. However, once he becomes more familiar with the staff and the routine, you may be surprised at how well he does adjust! He may even make a few friends there:)
Also, because you're a daughter who cares about doing the right thing, you worry about if this move for him IS the right thing. You are not alone with this struggle- caregivers oftentimes worry and feel guilty about decisions made in the best interest of their loved one. When my dad had a stroke and he came to live with me and my family for a while, I was worried that I wasn't giving him the best care and that he might be better off at a nursing home. All we can do is what seems right at that time and based on what you said about your father's health, it does seem that he is getting the best care at the facility - he has a lot of health issues to be dealt with and the staff can deal with those issues 24 hours a day, every day.
Please take care of yourself and try to trust that you are doing all you can right now - try not to get too exhausted!!!! You need your strength to continue caring for your parents - we will keep you and your family in our thoughts and prayers - Barb


Posted on 2008/6/11 8:55




Exhausted 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
Thank you for your thoughts. It is always good to hear from others that have gone and/or going through similar things. My Dad just got a new roommate at the Assisted Living Facility. Get this, his roommate is a 54 year old man that also has vascular dementia. I am hoping that they will become good friends and help each other through this.

This may sound terrible but I have deliberately been staying away some and not calling him that often. I think my Dad will be able to adjust better if I'm not always around. It is kind of like the concept when your child goes off to college. They need to fly away from the nest. I know that sounds crazy but that just seems to be the right thing to do. And I work full-time and have a four year old to take care of. I can barely keep up with my own family.

I haven't told my Dad that he has vascular dementia because I just don't think he will totally get the entire concept. Maybe I'm going about all of this wrong but I am just trying to pray and let God guide me.

Oh..this is so hard and scary.


Posted on 2008/6/11 20:57




Exhausted 

none Re: grief in the dementia patient

Hey Barb or really anyone out there that has dealt with the step of telling your love one what is going on. I was wondering if you have any advice on a particular subject. My family I think reached a milestone today. My Dad was told by his primary doctor exactly what is going on and that he needs to stay at the Assisted Living Facility in the Dementia section. Dr. Doctor was very kind yet professional in his delivery. Honestly, if this would have come from me or another family member my Dad would not have accepted it.

Dad seemed to take it pretty well. Again, my Dad is on 64 and is still very sharp at times. But it was almost as if he was glad to understand why he is having problems. I know he may have a hard time at times accepting this but at least a doctor told him that he has to stay at the ALF. (Ha, Ha, that spells ALF...anyone out there remember that silly TV show? I actually like ALF) .. Anyway, maybe just maybe the timing was right for my Dad to hear this news and accept it and make the best of it. Can anyone relate to this and provide advice.

Thanks. Exhausted aka Robin


Posted on 2008/6/12 18:09




none Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Robin!
That is great that your father's doctor took the time to talk with your Dad and explain to him about why he is staying at the ALF ( I liked the show too:) Ahhhh, the good old days of simple, good fun programs:). I give that doctor a lot of credit for talking with him. And I do think that people can "hear" things better when it comes from a doctor rather than family - especially true for some folks.

Your Dad will probably still have times when he wants to go home or will ask again why he still needs to stay at the facility but this is normal. Dementia can affect not only memory but judgment and insight into one's own behavior - rational thinking sometimes just won't work. So, try not to be too disappointed if your Dad still has days when he's not too accepting and is pretty irrational about the whole thing.

In the meantime, just take it one day at a time when you prepare yourself for a visit with him and if he's having a good day - that's great. If he's having a rough day where he's agitated or grumpy or nothing you say seems right for him - on those days, make your visit shorter. When your Dad is more tired or not feeling well, he may be more difficult to talk to . . . you can visit longer next time.

I don't know if any of this really helps, Robin, but just know that you aren't alone with your struggles in that caring for parents and all that that means can be so very hard and stressful and most adult children who are caregivers have felt stressed and exhausted and - well, you know! Please keep in touch - we're pulling for you Robin!!!!
Barb


Posted on 2008/6/14 9:40




none Re: grief in the dementia patient


Just popping in
Joined:
2008/6/12
Posts: 1
Hey Barb. I just read your reply. Thank you. Your thoughts and knowledge is helping keep me focus. I know I'm probably on the wrong forum string but I found it accidently (well, it probably wasn't an accident) but I'm glad I did find this forum. I'll try to jump over to a more appropriate topic but ANYWAY...

My Dad seems to be dealing with it better darn good considering all that my family is dealing with. My Mom gets results from the ovarian cancer tests this coming Friday. So far she is making a remarkable recovery. They can do so much these days. We are hoping that her CA125 levels are at 25 on this Friday. They have come down from 8000 (I know..unreal high) this was before the 7 hours debulking surgery and 8 chemo treatments to her most recent tests revealing CA125 of 54. She is a strong woman and keeps a smile on her face all the time even through this ordeal with my Dad's Dementia.

Dad is very smart and still is. His new roommate is very smart also but is still dealing with dementia also. One of the other resident is a recently retired college professor from one of the elite colleges in this country. Dementia truly doesn't care whom you are that is for sure.

This is truly a day by day journey. I'm looking forward to more talks. Is looks like you are helping alot of people through this forum. God Bless You. Because there are so many people dealing with this.

I"m sure we will talk again.

Exhausted aka Robin... Maybe Soon I can drop the Exhausted part.


Posted on 2008/6/15 18:48




none Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Robin - I just read your message and had to write quickly to say how very happy I was to hear about your mother's progress - that is just wonderful - I'll keep her in thought and prayer that she continues to heal throughout the coming months, years . . . she seems to be a very stong, resilient woman with a positive spirit too!!

And you are so right - dementia knows no boundaries! We see patients in our Alzheimer's clinic every day who are diagnosed with AD as well as other dementias from every walk of life. It's just that those who have more education sometimes seem to cover for their memory deficits better from the beginning - which unfortunately makes it harder for the patient and family to actually realize there is a problem and come in for a diagnosis. Nevertheless, I do hope that your Dad continues to adjust and makes a friend or two in the process!

Okay - talk with you later and remember to take time for yourself in the process:)
Barb


Posted on 2008/6/19 11:15




Exhausted 

none Re: grief in the dementia patient

Hi Barb. It has been almost a month since I last posted. My Dad is the 64 year old with dementia and my Mom has ovarian cancer. I have a question about the stages of dementia. Also, the poster that made the joke about Assisted Living Facility and ALF TV show. ANYWAY....

Since Dad is settling into the ALF and he seems to be "clearer" in the past month or so than he has been in a long time. He is now on Zoloft and Aricept.

He has his daily routine. I'm told that he takes his shower, eats his breakfast, socializes with other residents and staff members, reads the newspaper, listens to CDs on his personal CD player and enjoys going out to the many activities the ALF offers.

So... that is all wonderful but of course, now I am doubting my decision to put him in ALF and maybe he really doesn't have Dementia. But I do feel this is because he is in a control environment and doesn't have major stresses on him like he did before.

Do you see other family members going through doubts like I am? I mean, I really want my Dad to enjoy his life and be safe but I guess it is so hard to really understand dementia. I guess I'm like many people and thought he would just be totally out of control and not be able to still function for himself for a while.

I guess I'm just waiting (not wanting but waiting) for the next stage to happen . Do some people with dementia continue to read the newspaper and so on? I know that is probably sounding disrespectful but I truly do not mean it to be. I'm just trying to understand the illness my Dad has and hoping that I am making the right decision.

Any Thoughts?
Thanks


Posted on 2008/7/7 18:23




none Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Robin - It sounds like your dad is really adjusting well to his new "home" and that is terrific!!!

Alzheimer's disease is the most prevalent of the dementias and the stages of dementia are not really all that definitive - however, as the disease continues to affect a person's brain, there is a progressive decline in memory and thinking. Don't be fooled by this progressive nature to the disease - some days are better than other days and there are many things that can affect how well a person with dementia is doing from one day or week to the next. Maybe, because your dad is in a place that he is more comfortable with - faces that he recognizes and rooms that are more familiar to him - he is less anxious and less stressed. In short, he is feeling better about his environment. As a result, he may be functioning better and his thinking may seem to be better because of this and his medications of Aricept and Zoloft.

Please try to remember that some days will be better than other days - and as time goes by, he may continue to decline in memory and functioning but still seem fine on those "good" days or weeks . . . it's not that he is now cured of dementia but that your care and his adjusting to the facility and the medications are helping him cope with his disease much better than if he was not receiving all that good care.

It's not unusual for caregivers to express the same doubts and concerns that you have shared about whether their loved one really does have dementia if they are able to manage and adjust as well as your dad has. However, the course of dementia is really gradual and changing over time - so that you may only be able to see decline in memory, thinking and change in behavior or mood as you look back over time - 6 months, a year or more.

Check out the Alzheimer's Association website for a good overview of the stages of dementia if you like - www.alz.org. You may also want to call the Alzheimer's Association in your area (check that out in their website for contact info) for support groups and caregiver classes to help understand this disease a little more.

In the meantime, please take care and know that you really are caring for your dad in the best way you can now by allowing him to be in a place where the staff understands dementia and can be there for him 24/7.

You are an awesome daughter and we will try to help in any way we can as you continue to care for your parents, Robin!
Barb


Posted on 2008/7/10 21:01




Exhausted aka Robin 

none Re: grief in the dementia patient

I can't tell you how much you have helped me and I'm sure a ton of other people. Bless you. Your words are calming and you are doing a great thing helping people understand this disease. It is so tricky and my doubt can be soooo strong at times but I have to keep trusting that I'm do the right thing. Keep doing what you are doing!!!
Robin


Posted on 2008/7/12 18:56




none Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
HI Robin - Thank you for your kind words - I do appreciate it:)

I think that one of the hardest issues that caregivers struggle with relates to feelings of "Am I doing the right thing?" I personally think that if a caregiver is concerned about this issue, it means that they care so much about their loved one that in all probability ARE doing the right thing!!! Anyway, please know that almost all caregivers who care, struggle with these concerns - and, when a loved one has dementia it only makes these concerns greater, because you are having to make decisions for the other person!

Hope that the last few weeks have been okay for you and your family . . . remember to take time out for yourself, Robin, when you can!!!!! You can't give to others what you don't have because you're running on empty - you would do at least as much for your car!!!
Barb


Posted on 2008/7/25 9:00




Exhausted aka Robin 

none Re: grief in the dementia patient

Hi Barb. It has been a while since I have been able to check the forum. My Dad is now in an apartment by himself in the assisted living facility. He has improved enough for the facility staff to feel comfortable for him to have his own apartment and some new independence.

He has been on aricept for about 2 months. He is doing so good that I'm really doubting my decision for putting him in the facility. But I would say the very fact that he loves his apartment, the dining area, the social activities, the staff and so on is probably a clue that YES my family is doing the right thing by placing in the facility.

I know he probably would prefer to be at home but maybe he realizes that he really needs people to watch after him. I guess one day I will accept that I am doing the right thing but right now it is a constant struggle.

He seems to be doing very well with his memory and not getting confused. He does seem to have a normal day and then a slow day. It is hard to explain. Some days he almost seems sharper than I am and then at times kind of manic. Is this the medicine and the controlled safe environment working?

I guess what I would like to know how does the aricept as far as how long will it help? I have read that once it "kicks in" and if it has a positive effect it can place the person back about 9 months previously and it could give that person a good 6 - 12 months. I'm not sure if I am explaining it even anywhere near to what the correct explanation is.

Can you shed some light on how it can help and possibly how long it could help until the dementia eventually out runs the medication? I just almost feel like this recent incredible positive change is the medication. Could there be any truth to this?

Thank you as always..
Robin


Posted on 2008/8/10 21:26




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Robin! So glad to hear that your father is doing as well as he is now! That is great news! Now, regarding how long we can expect that he will be doing better or how long the Aricept (donepezil) will continue to help your dad's memory, well . . . it really is hard to say. Mostly, because each person reacts to medication so differently. However, from what we know from patient information and research studies, Aricept can help with memory for about 6-12 months and sometimes longer. Many people with AD also take Namenda for memory and this also seems to help patients do better with thinking, memory, mood. See this link for a good overview of these medications:
http://www.alz.org/national/documents/topicsheet_treatments.pdf

Also, even for persons taking these medications, some days will be better than other days. It varies according to how tired a person is, if they are experiencing any pain, or some other discomfort - on these days it's expected that a patient will not do as well as when they are rested and generally content. I think it's on the good days that caregivers may doubt that their loved one really has dementia because they really seem like they are back to their "old selves." Conversely, on the not so good days, it's a painful reminder that their loved one does have dementia. So, I guess the point is to just enjoy those good days or weeks or hours and time spent with your Dad!

Again, hope this helps, Robin . . .I know we can't fix the disease yet but hopefully this forum might help cope with the disease until researchers do find the cure. Take care and it's good getting updates on how everyone is doing!!!

Barb


Posted on 2008/8/11 10:04




exhausted 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
Thanks for the insight AGAIN. I have done a lot of research and reading a ton of forums. This one is my favorite. I hope that my questions and your answers are helping others out there as well. It does seem like a lot of us out here are having a lot of the same fears and doubts.

I have read a lot on the facts that some people react positive to the medications and some have bad side effects. So far, my Dad seems to be responding well.

But having some knowledge about dementia does help people with dementia as well as the caregivers cope better. And you mentioned the "being tired" aspect. Yes, I can absolutely see where my Dad is slower in his speech on the days that he is tired. Obviously we all get tired and slow down a bit but his "slowness" seem a bit out of the norm.

And you know, now I can think back at times I would talk with him over the phone and it was like his speech was coming out of a different person. It was slurred and he was just want to going over things over and over and OVER. I would a lot times think he had been drinking. My Mom would get on the phone as tell me No, he had not and she would never lie to me about anything. I'm thinking this dementia has been working on him since the blood clot in his brain 4 1/2 years ago.

I'm am trying to prepare myself that we will see a "drop" one day in the next year or so. Maybe sooner. My Mom and I are preparing ourselves. It is odd how we as caregivers seemed to always be anticipating the next stage. I think it is a good thing to try to be somewhat prepared for the drop in the staircase progression I have read about.

I know one day I will be able to realize that YES, I did the right thing but I guess for now I just need to not be so hard on myself. Thank you a million times over. You have been a blessing with your insight.


Posted on 2008/8/11 19:15




chainy 

none Please help

Previous post - Next post | Parent - No child |
Hi,

my grandad has suffered from dementia for at least 5 years now and has bad memory loss, my grandma was in good health and his full time carer.

two days ago my grandma died of a heart attack very unexpectedly and it is a massively difficult situation.

my grandad keeps forgetting that his wife has died and keeps asking the same questions over and over again, re-realising her death. this puts him in a pretty much constant state of hysterical crying and crying out her name. he is completely confused by the situation and it's very hard to keep repeating everything to him and him barely believing it, wishing it were a dream. when you tell him that it was two days ago he cant understand what has been happening all that time.

i dont see how he is ever going to be able to realise that my grandma is gone and i dont know how to help with his grieving.

any advice will be very much appreciated as i feel i need to help my dad and rest of my family.

x


Posted on 2009/2/26 12:39




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Webmaster
Joined:
2003/4/26
From: Dallas
Posts: 262
I was saddened to read about the death of your grandmother. You have our deepest condolences.

The circumstances you describe are enormously hard and painful for all concerned, making the hurt all the worse. It hurts even for us to hear just because we know what families go through in thee kinds of situations.

There are some things that I do not know from your post: Did they still live together; Was she his primary caregiver; What medications is he taking? All of these things figure into your (and his) process of dealing with the loss, recovering from it (as much as possible), and how best to help him in this transition.

For instance, if he lived at home with your mom as the primary caregiver and the person most present with him, he may need additional medications to ease his anxiety (not enough to stone him - we wouldn't want that - but we do want to help ease some of the wide swings of emotion, as he is not able to process those emotions like a normal person would. Indeed, some families feel so obligated to tell the truth to the patient that their loved one died, when it might just be better to compassionately lie. As long as one has told another the truth of a loved one's death, they have met their moral obligation. Those who feel an obligation to continually repeat the fact that the loved one died force the Alzheimer's patient to continually re-process the death - and they aren't really equipped to do so. But, that leads to another question: At what stage is your grand-dad's dementia? For people who are further along in the progress of AD, they will do well with a creative lie. People earlier in the disease process likely will have more difficulty with it though it can still be a helpful tool. If he can be persuaded (?) that she has gone on a little trip, or is in the hospital, will he believe that? It's burdensome on you (as it would be on me for feeling dishonest) but may well be more compassionate in terms of caring for your loved one.

So, we are asking for a little more information from you about the circumstances that he lives in. You should also keep in close touch with the doctor treating his dementia. He should know best how to manage this stressful time. I'm sure that Barb, my wife, will also reply to your post when she gets a chance (likely a couple of days).

Just to be clear, we do not encourage normal people to medicate grief away. That being written, when physiological circumstances arise that complicate grief and risk clinical depression or intractable grief (as I believe may be the case for him), medication may be a necessity as a bridge to recovery. Again, grieving is a necessary process and we must work through our grief. Anti-anxiety medication and tranquilizers may prevent that very necessary process. People with dementia often no longer have the same "equipment" to deal with their grief so they may need specialized help.

We are praying for all of you in this time of profound loss and confusion.


Posted on 2009/2/28 2:02




mary 

none Don't know what to do...

I am struggling with a major decision... here is a bit of history.

Mom has dementia, apparently has for several years. She drank quite heavily (somewhere around 4-5 manhatten's and 1 or 2 screwdrivers 7 days a week) unti a recent fall landed her in the hospital almost 2 weeks ago. She is 82 years old.

Dad was diagnosed with terminal cancer approximately 2 months ago and has been mom's caregiver. He fell at the same time mom did when he tried to help her as she slipped and fell.

We recently learned of mom's dementia over the last year, but my parents were very private independent people and would keep any serious illness or problem to themselves. They were completely ambulatory, dad was driving and they went out for lunch and dinner every day.

Mom was injured and hospitalized for 5 days, and sent to physical rehab. Prior to her going her dr. told me that she could not return home, dad was failing fast due to the stress of trying to take care of her and mom not understanding that she should be taking care of him. She still let him care completely for her.

We had begun to talk with dad about assisted living that also had a memory care unit for mom and he agreed that it was time because his health was declining and he was exhausted from taking care of her. When we discussed it with mom, she thought it was dad having to get the care and we found a place where she could go too so she didn't have to be alone and could stay right with dad. (it was the truth, not a complete lie)

dad went into assisted living while mom was in physical rehab, he is currently back in the hospital and we just aren't sure right now what is going to happen with him.

Mom will be released from rehab in a couple of days and we just don't know what to do. The whole time she has been in rehab, she gets agitated that she is there, doesn't remember that she has to stay, and wonders why no one calls her, or comes to see her. we see her everyday and talk to her every day. She just wants to go someplace to have lunch and dinner and a manhatten. (she went through the physical withdrawal while in the hospital, with the help of the dr. and medication for it)

I just don't know what the right decision to do is right. Dad doesn't have long. We don't know where she should be, the dr. says in memory care, my heart says home, and m brain says that I can't care for her 24/7. She doesnt' admit she had medications that she takes, and she has an alcohol problem that I certainly am not qualified to handle. But I am still guilt laiden when she calls me from rehab asking where I am, and why haven't I picked her up to go home. I don't even think she remembers that she was going to go to the assisted living facility to be with dad. She doesnt' know he is back in the hospital right now, I don't know how she would react and then I know she wouldn't remember anyway. She doesnt' remember from the afternoon to a few hours later when she has even seen me.

I don't know how to do this, I don't know what to say to her. I just dont' know what is right, its' killing me inside!!!! I need some guidance. I am trying to plan it so mom and dad will be at the assisted living facility at the same time. The I struggle with maybe she needs to be in a facility that is a bit more controlled, if you can understand what I mean by that. The have been together for 60 years, is it better for her to be away from him now... I just dont know what the right thing to do is...

All of this has come to a head in a 2 week span. My head is spinning and I have to make a decision within a day or 2. How will I handle dad's passing when it comes with mom, should I bring my mom home and try to care for her, should I put her someplace... I had always told her that I would take care of her... I feel as if I am letting her down. she is going to hate me. She doesn't feel there is anything wrong with her. The dr. said she does and has been masking it for a long time.

I am so sorry this is so long, but this is a HUGE problem and a very complex problem. I just don't know what the right thing to do is.......


Posted on 2009/4/13 23:50




none Re: Don't know what to do...

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Dear Mary,
You have had so much to deal with regarding your parents - I can't imagine how exhausted you must be these days!! This may be a brief response for now but I hope to address a few of your primary concerns. First, you ARE caring for your mother by admitting her to a facility that cares for persons with dementia - as you said, you can't be there for her 24/7 but there will be staff at a facility that can address her needs as they arise 24/7.

I know you are in a time crunch, so I'm going to suggest a few things and hope something helps - you may want to call a geriatric care manager in your area (website is: http://www.caremanager.org/ ) and tell them you need help in placing your mother and finding the best care for your father once he is out of the hospital, if he is able to do so anytime soon. They do charge for this service but they can advise you about better options for your parents in the community.

If your mother is ambulatory and wanders she will need to be in a facility that has a secure unit so that she won't be able to walk out the door. Some long term care facilities offer care from assisted living through more levels of care to skilled nursing - all on the same campus. This way, your parents may be able to live within the same general area. Check out those facilities that offer these levels of care in the community. You may want to call the Alzheimer's association for information about facilities that offer this kind of care in your area. Please try to remember that your mother requires a level of care that would be hard to meet if you brought her home with you. I think you would need some kind of home health service to help you care for you mother if you brought her home . . . or lots of friends, neighbors and or family to help!! Please keep in mind that the staff and good facilities that care for persons with dementia know how to interact with them and help them adjust to their environment - please try to not feel guilty about placing your mother in a facility such as this, as you really are caring for her in this way too!!

Maybe one step at a time for right now . . . I think once you find a place that will be able to care for your mother - that offers a secure unit for persons with dementia - and offers the type of care your father may need once he leaves the hospital, you will be able to handle other issues that may arise. Again, I would call the Alz. Assoc. or go to their website for information about a chapter in your area (www.alz.org) or ask for a social worker from your dad's hospital to talk with you about options OR contact a geriatric care manager for immediate help.

I'm happy to offer more options or suggestions if I can but my experience with facilities is in the Dallas- Ft. Worth Texas area . . .please let me know if you have a question regarding all this . . .I'll try to help as much as possible and hope to hear how things evolve with your parents.

Please take care, Mary . . . look forward to hearing back from you - Barb Davis


Posted on 2009/4/14 13:44




Guests 

none Re: grief in the dementia patient

Barb,
Thank you for your reply. Mom is still in rehab, she was supposed to be released last Friday, but fell again Thursday night. Dad was released from the hospital last Friday and they are now together (sort of, she is in one hall and he is in another) He is failing so fast. the dr. put him on some major pain meds and I think they had a bad effect on his brain. he is very weak. I am hoping he will be able to gain strength in rehab and get back to the assisted living facility that we had chosen due to the fact that there was a memory care unit there too. Mom has now gotten used to being in rehab now that dad is there too and they look too comfortable. Now there is a possibility that mom will have to leave Monday or Tuesday and will start with agitation all over again because dad won't be there. This may sound like I am putting the cart before the horse, but do you have any recommendations on how to handle it when dad passes?? I am feeling that maybe just something private with only family, and of course this will include mom. Then a week or so later have some kind of memorial service with a lunch for friends etc. but not include mom. I really don't feel she could handle a traditional funeral... oh I just hate having to think about it now, but it is a reality.
due to all the stress, I took a step back Friday night and my husband and I went to our cabin until Sunday with friends. I knew mom and dad were safe and I was only a phone call away. I will offer that advice to anyone, walk away for a day or so and take care of yourself. It gave me a renewed frame of mind and I finally got some sleep.

Again, any input is greatly appreciated.

Mary


Posted on 2009/4/19 22:32




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Mary!
One question regarding your father - if his doctor believes that he is appropriate for hospice, you may want to consider this option as a way to add additional help for and with your father, as well as yourself and family once he does pass away. Hospice can arrange for a nurse to visit as well as assistance with personal care if he is able to return to the assisted living facility. Furthermore, hospice can assist with bereavement issues now and in the year following the death of your father. You can look up a few hospices in your area, call one or 2, (they all pretty much offer the same type of help for those who are terminally ill)ask them all the questions you may have (or not, if you are familiar with hospice services) but first your father's doctor would need to state if your father is hospice appropriate.

Next, regarding possible options for your father's funeral - I think your idea is good. Your mother may become too confused and agitated with a longer memorial service. You may need to even keep the private service very simple for your mother's sake - if it looks like your mother is benefitting from the support of family and friends -then that's great. However, if even a simple service is too much for her, then be prepared to leave with your mother - it's always hard to know how to handle this, Mary. I think, though, that if you have options planned depending upon how your mother is doing, stress may be somewhat reduced for all.

Lastly, I agree completely!!!!! A day away or whatever you need to "recharge" your battery is so very important for you AND your parents. We always say that a caregiver can't give what they don't have and with all that you are doing you need time away to give something back to you! This is vital to your own health - of body, mind and soul:)

We will definitely be thinking about you all and hoping that something here will be helpful for you - if not, let us know and hopefully some other options may be more appropriate for all that you are trying to do now! In the meantime, please keep taking care of yourself while you are caring for everyone else!
Barb


Posted on 2009/4/20 9:48




whatagoodson 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
I'm a caregiver for mom, who dementia
started shortly after my brother's passing;
mom on the surface showed strengh, but nap off
to her favorite shows til' she overheard deceased
relative'sspeaking to her. On this subject, mom
always was a worrier; and if painfull news of
a loss is going to hurt so bad; just don't tell
them. Because although the memeory retention are
short; the pain is enough to worsen the psychosis
part of the disease


Posted on 2009/5/4 1:22




none Re: grief in the dementia patient


Just popping in
Joined:
2009/11/17
Posts: 1
Hi - I am not sure if this is appropriate spot for my comment as my mother might not be experiencing grief - her main goal is to find a way to get home. I had to hospitalize my mother a few months ago due to the progression of her dementia (mixed) and increased alcohol abuse. She has been declared non competent and we are now waiting for a bed in an long term care facility. Recently she has become very insistent about getting out of the hospital and home. She calls sometimes 10 times a day. This week she started enlisting the help of others in her endeavours - a companion service we hired to try to enrichen her life in the hospital. She seems to be getting angrier and most of the anger is targted towards me, because she knows I have her purse, keys etc. It is very hard to know how to respond because in some ways she understands what is going on - but it isn't clear to me just what she can process and integrate. Although it isn't pleasant, I am okay with her being angry with me. My main concern is that I would like to do what I can to ease her anxiety and so far, despite visiting and having "happy activities like picnics and games" the idea of finding a way to get home appears to be starting to dominate her thinking. Any ideas? Liz


Posted on 2009/11/17 20:49




question Re: grief in the dementia patient


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Liz - Sorry for what you are having to go through with your mother - dealing with a person who is angry and has dementia is hard enough but when it's your parent, it's 10 times harder, I think!
To begin with, why was your mother hospitalized? Was she prescribed any medications that might be contributing to her agitation/anger? Being hospitalized, however, usually increases a person's anxiety especially when they also have dementia - confusion, agitation, fear are usually experienced during a hospital stay. Is your mother taking any medications for a dementia such as Alzheimer's disease and if so, has she been given those meds while at the hospital? I know I'm asking more questions than offering answers to how to deal with her anger, but I'm wondering if any of these issues might be contributing to her emotional state right now.

Regarding your mother's fixation on going home - that's quite common when a person has dementia. She may continue to perseverate on going home once she is transferred to a facility. One way that might be helpful to calm her when she is insisting on going home is to say something simple like, "We would want you to be able to go home too but you have to get better (or stronger or healthier - you pick the term) first. So we're going to find the best nurses/doctors to help you get stronger." Oftentimes the person with dementia will forget what you said 10 minutes later and will ask again. For many persons with dementia this type of response works well because you are reassuring her at that moment - letting her know that you care and understand her concerns - and then try to change the subject - sometime this works, sometimes not. On days when your mother is really more agitated, you may want to keep your visits shorter or not even visit on that day, if you find that she is really focusing her anger on you. Are there any other family members that can visit too? Reminding her that some friend or family member will be coming to visit soon can give her something else to look forward to. For your own sake, when your mother is calling often during the day, I would let the call go to the answering machine and then call a bit later if it's not a real emergency.

I think that you've come up with some great ways to help keep your mother busy at the hospital - when she moves to a facility you may want to bring photos and engage her in putting together a little photo album that she can keep on her table - it's a good way for staff to know who your mother is and was, so that they can relate to her better. If your mother is physically able, the staff at the facility will probably try to engage her in some simple activities, which will also help her focus on something other than going home.

Again, it would be good to check what medications they have your mother on now and for what to see if any of these meds might be raising her anxiety.

Last but not least, please take care of yourself during this time and let us know how you both are doing - especially as the holidays are approaching . . . please let us know if we can help with any issue during this time too!
Barb (4Hope)


Posted on 2009/11/18 10:04




Lizstewart 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
Thanks for your helpful information and support. I have set up a meeting with my mother's geriatric psychiatrist for tomorrow to follow up on your questions about medication. I appreciate your response. Liz


Posted on 2009/11/19 19:39




none Re: grief in the dementia patient


Just popping in
Joined:
2009/12/18
Posts: 1
I am new to these types of forums....I hope it is ok to post here. My Mom is in middle stage vascular dementia and losing her speech. I found a wonderful assisted living facility that would take medicaid and her dog whom she had been co-dependent with for 9 yrs. He went to church with her for the last 9 yrs too!!!!! I thought this move was a wonderful answer to prayer until we had to put the dog to sleep less than 6 weeks after this big move. First we let her bury the dog in the back yard of the facility thinking that would be best, then she spent hours outside in the cold. So we dug him up and cremated him and she carries a fancy little purse around with his ashes everywhere she goes. She continues to be sad often( which is understandable), but now wants a burial plot outside where the hole is. She seems to forget often what she has believed all her life about heaven etc...but seems more at ease when I pray with her over the phone.
As she is bored there now.....she calls often with many different needs, and ideas about her dog. Do you have any suggestions on how to help her grieve this dog? With her dementia as it is, reality comes in and out. The doc did say he would offer an antidepressant for short term if she still seemed too sad. Any ideas. She is an hour away and I have 2 kids I home school.....juggling these responsibilities and priorities are very difficult and overwhelming.
Thank you!
I appreciate any ideas or support.


Posted on 2009/12/29 18:46




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Welcome to ElderHope's forum!! So sorry to hear about your mother's grief since her dog's death - the experience of grief can be especially hard for the person with dementia (as well as the family) because of the confusion, memory loss and loss of insight which accompanies dementia.

You said that your mother wants a burial plot where her dog was previously buried. Is it possible to put some of the dog's ashes in the hole and plant some flowers by the plot or place a little marker of some sort there? Probably seeing the hole in the ground confuses her and raises her anxiety about the whole thing so covering the hole and planting something in honor of her dog may bring her some comfort.

You also mentioned that she is bored there now - can you ask the staff to be a little more attentive to her, pay her a bit more attention, try to engage her in some sort of activity there? Your mother is grieving a loss as best she can right now, so some times she may be sad when she remembers her dog's death but other times she may appreciate a friendly face just spending a few extra minutes with her.

Does the facility offer any pet therapy? Not sure if this would help but if they do have pet therapy you may ask if they would stop by to see your mother - depending upon the extent of her dementia, she may become more confused and anxious when the pet has to leave with its owner or she may enjoy the time spent petting and talking with a dog again.

You said that your mother feels better after praying with you over the phone - is there a chaplain available through the facility or from a local Place of worship who can stop by and visit with your mother once in a while? She may feel much comfort from sharing prayers that have brought her solace in the past.


Lastly, an antidepressant may help if your mother continues to be really stressed by her grief - however, she will probably still have times when she just needs to talk with you and feel that support and connection to you. If nothing really seems to help your mother, then I would probably talk with her doctor about prescribing a medication and she how she does.

Please take care and my heart goes out to both of you - let us know, if you have a minute, about how your mother is doing over time and what, if anything, helped her during this time.

Most sincerely,


Posted on 2009/12/30 9:57




Lorrie 

none Re: grief in the dementia patient

I live far from my mother, but I have watched dementia slowly erode her ability to stay safely in her home when I visit or would pick her up for a visit. I received a phone call from her Dr. last week telling me that I need to come pick my mother up as she can no longer live on her own (she ended up in hospital for dehydration, her 3rd bladder infection this year,and a fall that resulted in chipping her vertibra). She has lost significant amounts of weight this year. I picked her up, hired someone to care for her two cats and a dog (which she adores more than anything) and we locked up her home and brought her 10 hours to my home. I am a social worker by training and run Aging and Disability programs, but I never dreamed how hard caring for my mother was going to be. She was compliant as she was more confused and disoriented. Now that she is taking her medications, eating and drinking at our house, she has become hostile and angry towards me because my family (my young son, husband and college age daughter) all want Grandma here, but we can't take her cats and dogs. She wants to go home and perseverates on this all day long. She gets angry, and follows me around badgering me to take her home, that this was trickery, etc... It is very hard to take. She is on Namenda, Wellbutrin, and Toprol, and a daily B12 and an Asperine. I just called the doctor to ask that he please Rx. an anti-anxiety medication, which he did today. It is Xanax .25 mgs TID. She can't be easily distracted and redirected. I am only into this my 2nd week, but I have to return to work tomorrow. She doesn't wander, she actually does o.k. at my home as long as she has someone such as me to remind of medication, eating, drinking, getting to appointments. But her anger is increasing as the days pass. She insists she can live on her own, the Dr. says she can't and she is in middle stages Alzheimers D. She has no insight at all. I don't know if she will adjust? She really gets anxious about her dogs and cats, and eventually I will need to find them a home, and my siblings and I will need to sell her house. I am DPOA, but I feel so guilty, and I think I don't have the right to make these decisions without her consent, yet, she has not insight. We tried in-home care, but my mother sends them away and refuses them entrance. She has always been very formidible, stubborn and independent. So, that won't be an option. I am very confused. Any advise would be appreciated. I can't believe how poorly I handle things. I have been giving people advise and information for years. It is so different when they are your own parent. Thank you, Lorrie


Posted on 2010/12/29 23:51




Guests 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
Hi Lorrie,
First, let me reassure you that it sounds like you are handling things pretty well, considering what you’ve been dealing with – on so many levels too!! And, I’ve spoken just this week with two health care professionals with Alzheimer’s disease experience who told me exactly what you said – that it really is so different when it’s your own parent or loved one with the disease and now you are the primary caregiver. I think that when we advise others about how to care for someone with AD or any other disease, as professionals, we know what rationally, logically works and can suggest to caregivers how to deal with whatever issue is at hand. When it’s our loved one with the disease, logic and rational thinking is now colored by our relationship with our parent and it’s on a more personal level than rational!!

Now, regarding your mother, there may be a better medication to prescribe than Xanax . . see how this works but if it doesn’t address the anxiety, ask her doc about another medication. Also, bladder infections can cause agitation, aggression, etc. When a person has dementia, they usually can’t verbally say how bad they are feeling because of an infection but will express it through their behavior! If you see her becoming more agitated than usual, you may want to check for a UTI.

As you mentioned, your mother has no insight at all – therefore, you will need to make some tough decisions on your mother’s behalf. Remember it’s the dementia that is causing her to need more care than she can provide for herself – if you are the primary caregiver, you will need help caring for her – maybe not all the time, but sometimes during the day. Other patients who also have refused to let a home health person come into their home, have agreed when the caregiver says that the reason they have hired someone to come to their home is to help with doing chores, shopping, whatever, because the caregiver needs the help these days, not to help their parent! Sometimes this works, sometimes not! Is there a Day Activity Center for persons with AD in your area – someplace that offers half or full day care where your mother can get out during the day, get some exercise, and will be cared for by people who know how to work with AD patients? Have you checked out the Alzheimer’s Association in your area? They may be able to offer some suggestions also.

Mostly, try to remember that it’s your mother’s dementia that is driving her behavior, that because she has dementia she needs you to make some decisions on her behalf, and that you will need some help – either from your siblings or home health or another agency – to care for your mother. One other thing I would suggest is to try not to rationalize too much with your mother – when she is angry with you about something, try not to take this personally, remind yourself that she has dementia and walk away for a few minutes –especially when distraction doesn’t work. I know that sounds easier said than done but rationalizing rarely works at all.

I think that because you do care for her so much, you feel guilty about almost any decision you make – but most other caregivers feel that way too!! It’s just so hard when it’s a parent you are caring for because of the changed way you now relate to her as caregiver, daughter, and decision-maker – as well as many other roles. Still her daughter but relating in a much different way.

Lastly, as you would tell any client dealing with this type of caregiving, please take care of yourself while you are caring for your mother and your family . . .

I know this was a long reply but there are so many issues you are dealing with now. Please let us know how you doing, Lorrie -
Barb


Posted on 2010/12/31 10:10




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
In addition to my last note, Lorrie, I forgot to mention about the pets . . . that's a hard one, for sure! If none of her pets can move in with you, maybe if you tell her that they are being cared for by some really great people and are getting lots of exercise and whatever, it will help her cope with missing them. If and when you need to sell her home, you can still tell her that those same great people are caring for her pets.

There's just no easy way around this. Pets are such great therapy for all of us and become such an important part of our lives that when they are not around, it's just tough - especially considering all the changes that your mother is dealing with since moving out of her home too.

Maybe other readers have dealt with this and have some suggestions to help!!
Barb (4hope)


Posted on 2010/12/31 10:24




Lorrie 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
Barb,

Thank you for that very helpful advice and the encouragement. I appreciate it. Lorrie


Posted on 2010/12/31 20:11




Florine Jones 

unhappy Re: grief in the dementia patient

Previous post - Next post | Parent - No child |
I cant write a small story. Your story is heart breaking but enjoyable. Wish you would email me & let me tell you about life story especially last (10) years. I am (74) have one daughter just turned (51) & we live 200-FEET APART. she has the local police dept. call me ever AM @ 7;00 to see if I lived through the night. She dont have time for me unless I have money for gas & meals. my email is I am Florine Jones [address edited out by ElderHope for posters protection]. do hope to hear from you. bye & God bless.

Editors Comment: Hi, Florine. We are deeply concerned about your safety and privacy on the internet. Therefore, we have take the liberty of removing your physical address. May I suggest using an email address. You did your post pretty well. You hang in there and visit again. Just watch about posting your private information, okay? I know what people can do with that information and you don't need anybody hurting you. Blessings, Sweet Lady.


Posted on 2011/3/9 23:04 | Last modified




terryl 

none Re: grief in the dementia patient

Just hoping for some advice on my situation. Dad had a vascular bleed (stroke) last May. While in rehab, it was discovered that he also has vascular dementia. He is still there, in the Memory Care part of the facility. Our mother had a stroke 10 years ago, and my father had been her primary caregiver until his. There are 3 adult childern, I am the eldest. Both of my siblings have health issues and mental health issues and can not help out much. My Mom has decided she will stay in her home alone, and has proved herself faily capable of doing so. I pay the bills from her funds, and she has access to her bank account, taking her monthly cash out for her living needs.
My father remains very sharp and articulate, often "fooling" people into believing he is being held in the care center against his will. He is on Medicaid, and insists that we are holding him there because we do not want to take care of him. We cannot take care of him, it requires 24 hour watch. The facility has had to deal with all kinds of horrible behavior, he has done unspeakable things to staff, and yet they love him and continue to care for him. He has threatened suicide, seen a prist, and a psyc. doctor, and his meds have been adjusted. He no longer cries all day and night, and has mostly stopped telling the family that he is divorcing Mom for the 30 yr old CNA he is sure is going to marry him.
Now it seems he has an atty trying to get him out, so where will he go? Will Medicaid allow him to just walk out the door? He believes he has lots of money and can hire staff to care for him. The home they own is a 400 sq ft. mobile home, not ADA safe, no room for staff, and no money for that either.


Posted on 2011/4/10 18:19




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Terry,
Although we cannot address any legal issues through our website, my first thoughts relate to the question about your father’s vascular dementia. If he has dementia, was anyone in the family given power of attorney for either he or your mother before all this started to occur? Power of Attorney criteria vary from state to state so you may want to do a search for your state and what is involved in getting this done as soon as possible – if your father is still competent to give such authority to another person.

With Power of Attorney, you or one of your siblings would be able to make decisions on your father’s behalf when he is no longer able to do so – as is the case when someone is cognitively impaired from vascular dementia. I would suggest talking with someone, perhaps a social worker, at the facility where your father is staying about all this, as well as whether he is competent to hire an attorney to represent him. Discuss with the staff at the facility your concerns about your father’s well-being and this possible issue relating to an attorney. Something just doesn't sound right about your father being able to hire an attorney's services, given the fact that he is in a Memory Care facility.

It sounds as though you will have a lot to deal with in caring for your parents and the more that you can get information from the facility, doctors, other health care providers, the better! It’s always harder when siblings are unable to provide much support, so please take care and let us know if we can help with any other question . . .

Barb (4Hope)


Posted on 2011/4/20 14:29




joanne 

none Re: grief in the dementia patient

My mother passed away 2 months ago from Alzheimers. My dad has dementia and they were in the same home. We have told him that my mom has passed but of course he will forget. HE USED TO sit and visit with her every day. the weird thing with my dad is he doesn't react to my mom being gone...he will got to visit her and the staff will tell him that she is in heaven,and he will say noone told him or that they are lying. he does not cry...he never asks me about my mom any more when I am visiting...I wish I could understand dementia more. My advice would be to just go along with what your dad says and if he asks about her just say she is still in hospital...why renew his grief aver and over


Posted on 2011/5/13 17:54




joanne 

none Re: Re: grief in the dementia patient why no signs of grief

Previous post - Next post | Parent - No child |
That is my question..
why are there no signs of grief from my dad with my mom passing away from alzheimers? Even if he is reminded he doesn't get upset..he has visited her daily for the last six years..they were in the same home.


Posted on 2011/5/13 18:05




joanne 

none Re: Re: grief in the dementia patient why no signs of grief

Previous post - Next post | Parent - No child |
That is my question..
why are there no signs of grief from my dad with my mom passing away from alzheimers? Even if he is reminded he doesn't get upset..he has visited her daily for the last six years..they were in the same home.


Posted on 2011/5/13 18:05




none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Dear Joanne,

I’m sorry for your mother’s passing and for you now dealing with your father’s dementia and confusion about her passing.

You say that your father has dementia, which means that it will not only be hard for him to remember that your mother has died but also what it means that she has passed away – and his emotional reactions to death may not be what would be expected for someone without dementia.

The Alzheimer’s Association’s website: www. Alz.org offers much information about dementia and how to interact with someone who has cognitive impairment relating to dementia. However, when some has dementia, the ability to remember – especially short term memory – is impaired as well as the ability to process information and make sense of what others say or do. Therefore, it’s understandable that your father does not believe others who say she has died because it’s hard for him to understand or process those thoughts that relate to her death. I think that you are on the right track to just meet your father where he is when you visit him, meaning answer a question simply about your mother’s passing and then change the subject or distract him in another way, like ask if he would like to walk over and get some juice. The most important thing is your caring presence and the reassurance that you will continue to “be there” for him, will continue to visit, etc. Some days may be harder for your father than other days, he may seem more confused or agitated and other days he may appear better. Just know that this is normal for someone with dementia – even though it can be very hard to cope with these changes in mood and memory for family and friends.

I hope this helps some – please check out the Alzheimer’s Association for more information about dementia, as it may help you better understand your father’s behavior and thinking – now and in the future. Please take care and again, I am so sorry for your mother’s passing.
Barb (4Hope)


Posted on 2011/5/16 13:01




astrid 

none just learned my mother was diagnosed with vascular dementia

hello. after having noticed that my mom started to repeat things and get slighlty forgetful in the past 2 years and also having suffered a minor stroke i spoke to her doctor today. he told me that he has diagnosed her with vascular dementia after various test and checks. he says the medication she takes is all that can be done at this point (blood thinners, aspirin etc). she also had both arteries (by her throat) "cleared". she is still i d say 90% coherent, but i wonder how to act on this news? what to get myself prepared for? how quick will things get bad? i have not addressed it with either her or dad, as they always claim "everything is just fine" evertime they come home from doctors visits. it seems they chose to hide it. how to react to this? what to do? i just dont know how to handle this new page in our family book - thank you much for help and advice! astrid


Posted on 2011/9/21 10:25




none Re: just learned my mother was diagnosed with vascular dementia

Previous post - Next post | Parent - No child |

Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Hi Astrid,
Here are a few good links to get more information about vascular dementia:
http://www.helpguide.org/elder/vascular_dementia.htm
http://www.mayoclinic.com/health/vascular-dementia/DS00934
http://www.alz.org/apps/findus.asp


I wonder if her doctor considered starting her on a medication such as Aricept to possibly help with her cognitive functioning/mood issues – after she is stable on a medication such as Aricept, her doctor may then prescribe Namenda, which can be taken at the same time as the Aricept, to help her memory and thinking. These medications do not stop nor slow the dementia but can help the brain function better for a bit longer than if she were not on the medications. You may want to read up on these medications and then ask your Dad to ask her doctor about whether they would be appropriate for her.
Regarding how ”quick things will get bad”, that really depends on how impaired she is now and varies from one person to another. You may want to contact a local chapter of your Alzheimer’s Association to get more information about vascular dementia as well as ways to help your parents during the months and years to come. It’s not unusual for a spouse to “cover” for memory decline with their spouse – and sometimes it’s just hard for them to recognize memory decline when they are living with that person every day. So, the more information that you can get about dementia the better you will know how to work with your parents to plan for the future!
Please let me know if you have any questions after you look at the links suggested above . . . hopefully, the local chapter of your Alzheimer’s Association can give you the information and support to help you through all this.
Take care,
Barb (4Hope)


Posted on 2011/10/5 15:09




Teri 

none Re: grief in the dementia patient

Previous post - Next post | Parent - No child |

Just popping in
Joined:
2011/11/14
Posts: 1
We just moved my husband's elderly Aunt here from out of town. She was never married and has dementia. The reason we moved her here is because of three falls in one month and a social worker becoming involved and she ended up in a memory care unit in a hospital in her home town. After moving here the Aunt started asking about her family members including her widowed sister whom she lived with for over 40 years and who passed away from heart trouble about 4 years ago. When we told her that her family members had passed away (the brother and parents years ago), she has become distraught at times and insists that someone has murdered them and wants a investigation. It has become a huge mess. You cannot distract her from this thinking. Can anyone give me any ideas how to handle this situation? All she wants is for to call the police so they will investigate. I have no ideal what to do get her away from this type of thinking.


Posted on 2011/11/14 19:55




  Advanced search