terminal stage alzheimers palliative care

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normal terminal stage alzheimers palliative care

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I would be grateful for any advice. My mother has had early onset alzheimers for 15years. She is in her early 60's and has been in care for 7 years.
She is now profoundly deaf, blind, incontinent. Unable to communicate in any way and cannot stand or move unaided.
She screams just about non stop at 30 second intervals for approximately 15 hours per day. This has been happening for the last 5 weeks - (this seriously that is).
She appears to be really tormented rather than in pain. It is incredible distressing for the family and for the other patients and nursing staff.
We have been told by the hospital that this is the most severe case they have seen.
We wish to have palliative morphine treatment started to try to abate the screaming and give her some peace. Does anyone have any knowledge or suggestions for alzheimers in such an advanced state.
Your suggestions would be appreciated we are unable to cope with this anymore and find seeing our mother like this incredibly distressing.


Posted on 2003/6/7 4:19




normal Re: terminal stage alzheimers palliative care

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2003/4/26
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Dear Friend:

First, we are so saddened to hear of the pain that you are going through and the torment that it sounds like your mother is enduring.

Barb will know more about this than I do. If she doesn't she can probably find out. And she will respond, when she gets some time. We're caring for a sick one at the moment, so it may be Monday before she gets around to it.

The term for what you are talking about is terminal sedation. It is a pathway that needs to be carefully chosen, as some facilities will proabably balk at it, and others might try to have you move your dear mother out. They are often worried about being confronted by regulators with chemical restraint.

I'm assuming that you have a hospice involved. And, yes, they do care for patients in the hospital, as well. A hospice provider should be involved. Hospice providers are generally more familiar with extended periods of pain management. Moreover, they may have some additional clout as patient and family advocates. Whether the yelling out is due to pain or psychic suffering, your perception is that she is suffering. Terminal sedation is an option. Personally, I've told Barb that if I am suffering, that I want to be terminally sedated. If she likes, she can try to bring me around occasionally to see if the pain is gone enough that I can enjoy being with her, but otherwise, I don't want to be in pain.

Going back to pain medicine, medical facilities are often very wary about giving high doses of morphine. But, the medical ethics are clear, and have been for centuries, stating that Quote:

...it is morally sound to give the amount of medication necessary to relieve pain, if that is the intention, even if it will likely lead to the secondary effect (thus, the double effect) of the patient's death.

For more on the double effect, from all angles, CLICK HERE.

In general, hospices, in my opinion, have been more comfortable honoring this time-honored principle. In other words, they should, and will, give what medications it takes to ease your mother's suffering, if that is what you believe she would want and you would want. To be clear, ElderHope is against euthanasia, very strongly. We do, however, want to see the suffering of patients controlled: "First, do no harm."

It may take the rebalancing of the meds. It would be helpful if we were able to know what meds (and amounts) she is taking, at least the pain meds and the psych meds. For instance, we have seen anti-psychotics help some patients greatly: Others, it just makes the situation worse. In any case, if you can let us know what she's getting, we might be able to ask some friends come next week.

God knows, we feel for you. Please take care. Consider getting hospice involved and tell them what you wrote here: that you want the suffering controlled. We'll say some prayers for you and for yours...


Posted on 2003/6/7 11:01




normal Re: terminal stage alzheimers palliative care


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2002/12/10
From: Rowlett
Posts: 56
Along with Mike, I am so sorry for your mother's current state and for you and your family . . . I was just wondering, what medications is she currently taking? Has there been any change in dosages, etc.? Is she taking any anti-psychotic type medications?

The morphine may be the answer to her pain/anguish. Some studies have indicated that persons with Alzheimer's disease that scream out regularly throughout the day, seem to become more calm with less screaming once they are placed in hospice care or receive more intervention from staff . . . researchers believe that part of the reason for this may be related to the additional attention and care they receive from the hospice staff. It's so hard to know exactly what the screaming is about but if a patient seems calmer with a change in medications and/or the attention of extra staff, this may be the answer for a painful problem. Again, there may be several reasons for your mother's screaming - please let us know how she is coming along . . . you all will be in our thoughts.
Barb


Posted on 2003/6/9 9:03




normal Re: terminal stage alzheimers palliative care

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2003/7/3
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I just read your post and the kind responses from Mike and Barb. I am truly sorry for what you are going through. My Mother-in-law lives in my home and we have 24 hour care for her. My husband and I couldn't continue to care for her over a year ago. It was just too much. She still speaks a little and is content. The thought of her suffering and crying in pain would break my heart. You are in my prayers. I hope the situation has improved since your initial post. I will pray for God's peace for all involved. I have come to the conclusion that AZ is a spiritual battle as well as a physical tragedy. With prayer, I believe your Mom will find peace. God bless you.


Posted on 2003/7/3 8:38




normal Re: terminal stage alzheimers palliative care

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Dear ElderHope Reader,
What a profound and meaningful message you have shared . . . I agree with you that Alzheimer’s disease can effect much more than just the mind. I have listened to so many caregivers and persons with dementia share their stories of how their lives have changed since the onset of Alzheimer’s disease. Each story touches on so many aspects of daily living that includes all of what it means to be human - our hearts, souls, and relationships with others. It sounds as though you understand this and express your love by your care for your mother-in-law. Blessings to your mother-in-law, to you and your family. Please know that you all will be in our thoughts and prayers, also. . .
Barb and MikeQuote:

jtolles wrote:
I just read your post and the kind responses from Mike and Barb. I am truly sorry for what you are going through. My Mother-in-law lives in my home and we have 24 hour care for her. My husband and I couldn't continue to care for her over a year ago. It was just too much. She still speaks a little and is content. The thought of her suffering and crying in pain would break my heart. You are in my prayers. I hope the situation has improved since your initial post. I will pray for God's peace for all involved. I have come to the conclusion that AZ is a spiritual battle as well as a physical tragedy. With prayer, I believe your Mom will find peace. God bless you.



Posted on 2003/7/6 22:58




normal Re: terminal stage alzheimers palliative care

Joined:
2004/1/11
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I could have very well written the initial post. My mother has been living with me here in San Felipe, Baja California for a little over two months. The first few weeks were OK, though she wasn't aware of where she was or for the most part who was in the house but she seemed confortable. Then it started, the shouting and ongoing "rages" that would go on for hours, her strength for a women almost 90 is unbelievable. I have two women working 12 hour shifts so she is never alone and both of them have been struck by her more then once. She also attempts to bite us when she is in a rage. I've had the doctor prescribe four differnt medicines, the last being 5 mg.Dormicum injections, it only slurs her speech, it does not stop the flailing or shouting.
She has bitten herself badly twice and hit her arm on the wheel chair causing bad bruises more then once...
I've got the doctor coming over this evening to talk about morphine, it seems this might be a time to slow her down and let her have some peace of mind.
I'm grateful to see I'm not alone out here. It's a terrible disease we are living with and one that has me making sure my children know I want to take morphine should I ever be afflicted with Altzhiemers or some other disabling disease.


Posted on 2004/1/11 18:52




normal Re: terminal stage alzheimers palliative care

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Dear Cory IV,
I want to send you a quick note about your mother and will keep checking our Forum to see how she and you all are doing in the weeks ahead . . . regarding morphine - has the doctor began the morphine yet? If so, how has that worked for your mother? I wanted to also mention that there is a gel that can be very effective in reducing the kind of symptoms your mother has been having but it may not affect pain if this is also a problem - it's called ABH Gel - (Ativan, Benadryl and Haldol). It's topical and can be quite effective, depending on the patient and symptoms. Maybe ask her doctor about this if it seems appropriate and if the morphine isn't really helping (or if the side effects from morphine are a problem). Again, we're not physicians but we have had some experience with persons that have this type of agitation . . .
I can't imagine how hard this time must be for you, your mother and your family . . . . sure hope that in addition to the persons you have to help care for your mother, that you have some other help and support from other family members and friends. When and if you have a minute to let us know how you all are coming along, we'll look forward to hearing from you!
Please take care - Barb Davis


Posted on 2004/1/12 9:17


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normal Re: terminal stage alzheimers palliative care

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2004/1/17
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The good news is, Mom has not shown any anger in over a week and it can only be the new medicine, Haldol. We started giving it to her last Saturday, 10mg. three times a day. Monday night she went into a rage and we gave her a shot of morphine, her very first. In about an hour she calmed down and from that time on she has not displayed any anger. She remains calm and easy to care for...I pray it continues this way... I have more morphine but hope there is no need to use it.

Cory


Posted on 2004/1/17 15:54




normal Re: terminal stage alzheimers palliative care


Quite a regular
Joined:
2002/12/10
From: Rowlett
Posts: 56
Dear Cory -
That is great news!! So glad that your mother responded well to the meds . . . more often than not, the trick is in finding the right combination and dosage of medication(s) for the individual who is having the symptoms. What works for one person may not be effective for the next. Sometimes the dosage of a medicine will need to be adjusted several times, too . . . if you start noticing changes in your mother's behavior or symptoms, take note of what you are noticing and when . . . it will be helpful when you talk with her doctor.
Please keep in touch when you can . . . we realize that caregivers can sometimes only experience "random acts of message boarding" because they just don't have any extra time!!! However, we'll keep checking the forum to see how things are coming along for you all -
Take good care -
Barb


Posted on 2004/1/19 8:45




normal Re: terminal stage alzheimers palliative care

Joined:
2004/2/10
Posts: 0
Hi Barb,

Mom is doing just great now that she on Haldol. No more rages, she is now resting comfortably and is able to smile and we can chat, as best we can. She has started losing weight as i was told she would...but she is comfortable...

I see you listed tennis on your profile, I'm a tennis instructor on El Dorado Ranch here in San Felipe, I love the game.

Take care...

Cory


Posted on 2004/2/10 19:06




normal Re: terminal stage alzheimers palliative care

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Quite a regular
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From: Rowlett
Posts: 56
Dear Cory -
I am so glad that your mother is doing so well on the Haldol! You know, it's one of those drugs that can really fill the bill when used appropriately . . . and it seems like that's exactly how it's been prescribed!!! Just knowing that she is now more comfortable and able to smile again must feel awesome! Maybe now that she is more calm, and when she is having a better day, you can pull out some of her old photos of homes where she/you lived and talk about the "old days." Some elders with AD simply enjoy sorting through the photos in an album, rearranging them, etc.
And yes, I LOVE playing tennis - or should I say, playing AT tennis:) We don't get too many opportunities to play tennis these days, now that we have "adopted" 2 Golden Retriever puppies!!! Actually, I probably get more exercise just training/walking/playing with them than tennis! Anyway I think that tennis is probably a great way for you to work off some of the stress of the day - and enjoy yourself in the process!! ENJOY and hope your mom continues as she has -
Best wishes - Barb


Posted on 2004/2/11 14:15




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