Friend with dementia is dying and not dealing with end of life issues

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normal Friend with dementia is dying and not dealing with end of life issues

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Just popping in
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2005/5/3
Posts: 2
My dear friend who is only 50 years old has less than six months to live. A symptom of her physical illness is dementia and paranonia. Unfortunately, she is not aware of how much her mental state has deteriorated and she is making very bad decisions including not allowing her health professionals to share information about her with her family or friends. As someone who has been her friends since she was 14 years old, it is devastating to know that if she was thinking clearly how ashamed and embarrased she would be of her situation. Her children are devastated. Her siblings have all abandoned her.
I am afraid she will die a lonely, sad death with strangers making the final decisions.

I am driving five hours round-trip to see her this week and need advice on what to do to support her and her children.


Posted on 2005/5/3 22:35




normal Re: Friend with dementia is dying and not dealing with end of life issues


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From: Dallas
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Hi, Tammy!

Welcome to ElderHope and thank you for the time you took to visit.

The situation you describe is very sad and the pain of it is palpable. It is among the hardest things we as humans do to see someone we care a great deal for go through such circumstances.

As you have described the situation, it appears that your dear friend is incapable of making appropriate decisions for herself. And, unless you have some legal standing in her life, you are very much on the outside, at least in terms of your ability to do anything that will get her better care. And, this, in itself, is very hard - the sense of helplessness.

As to how to support her family when you go this weekend, I think that you can offer resources that may be of help, like this site and others. You can suggest the possibility, painful as it is, of having her declared to be incompetent and turning over the legal responsibilty of her care to her family or a guardian. At least, the family could talk to an eldercare attorney to see what their options are in this case. Still, all you can do is make the suggestion; it is up to them to weigh the benefits vs the burdens of intervention in their mom's circumstances. Mostly, though, it is important to give them a safe place to explore their feelings and confusion about what they should do. The situation likely has them paralyzed into doing nothing. When we are adequately able to ventilate our feelings it allows us to make a better and more accurate assessment of what is really relevant to the situation. For instance, if her family did decide to intervene, many families fear the anger and rage of the person. But, if she has dementia, she may rather quickly move past her anger and rage at the change in her situation. Should she not move past it, at least she might find herself placed in a facility that was safer for her, more hygenic, and more comfortable.

As to supporting her, addressing her about her choices, her environment, etc would most likely be counter-productive. It would only arouse her paranoia. Moreover, she probably couldn't meaningfully process it for any length of time at all, depending on the extent of her cognitive impairment. Concretely, the best thing, I think, is to try to have as wonderful a time as you can, to do things with her that do not require a lot of choicemaking, public interaction, and the potential for failure. As well, try to prepare yourself for her to not interact with you in the same way as in days gone by - a tall order, I know. I think the best thing you can do for her is to give her "one hell of a time." She probably has fewer and fewer positive experiences as each day passes. And, more and more, people tend to withdraw. When they do come by, the experience is so likely to be painful to them ("Mom doesn't recognize me anymore", etc), that the visit ends up feeling negative and clouded over by sorrow, etc. We miss our loved one, and the focus tends to turn towards our feeling of loss, not the loved one's feeling of being lost and needing to feel connected for as long as possible.

Many times, in caring for the dementia patient (especially those further along in the process), I can connect with the patient in a way that family can't. This is because the encounter between the patient and family is so fraught with hopes, expectations, fears, sorrow, etc, that the focus of the encounter is taken off of the patient's needs. When I go to see them, I only want to make them smile. I have no expectations of them. And, maybe that's the best advice I could give: to go with no expectations except that you will try to give her a great time with her dear friend (you), that nothing she does is a failure during you time together, and that this is potentially one of the last opportunities to enjoy being with "her." In other words, just being you and being there for her will be all you can do.

Perhaps I'll think of more later, but I wanted to get this off to you before I went to sleep. We will pray that this is a good time for you and for her.


Posted on 2005/5/4 0:12


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normal Re: Friend with dementia is dying and not dealing with end of life issues


Just popping in
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2005/5/3
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Mike,

Thank you so much for your thoughtful and sound advice.

I especially appreciate your pointing out that my friend may have trouble processing information for any length of time. Oh, this does make sense under these circumstances. I was just having trouble realizing it because "Jane" has always been so bright and thoughtful and I clearly haven't totally adjusted to the new Jane reality.

T


Posted on 2005/5/4 15:49




normal Re: Friend with dementia is dying and not dealing with end of life issues


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From: Dallas
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You're very welcome, Tammy. As the weekend nears, I hope it is absolutely wonderful for you both. I do have a link that may be of help to you. It is specific to those with Alzheimer's Disease(AD), but it may form a helpful approach to making the weekend as special as possible. It comes from the very good site, Alzwell.com. The link that I want to direct you to is here. I hope you will be able to stop by before your trip.

The New York City chapter of the Alzheimer's Association has an excellent page for your perusal. It includes making note of what the person has enjoyed in days gone by, the skills they still have, and their physical limitations. Having taken these into account, it will make the chance of a meaningful time much more likely.

Additionally, be attuned to all five senses. Some research has shown that the senses, each of them, starting especially with smell, being stimulated in an organized and noninvasive way, can help the AD patient be more aware of their environment and the people around them.

We also added some books in the Alzheimers Disease section of our Amazon bookstore database. This link The Best Friends Book of Alzheimer's Activities to the publisher of the book The Best Friends Book of Alzheimer's Activities has an excerpt from that book that has a lot of information on how one can prepare activities for circumstances like yours.

I hope that this has been helpful.

Take care. And I pray she has some windows.

Mike
The Best Friends Book of Alzheimer's Activities


Posted on 2005/5/5 23:56


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<strong><span style="font-size:medium;"><span style="color:#990000;">For every human problem, there is a neat, simple solution; and it is always wrong.<br /><br />--H.L. Mencken</span></span></strong> <img src="http://www.elderhope.com/uploads/smil3db...


happy Re: Friend with dementia is dying and not dealing with end of life issues

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From: Rowlett
Posts: 56
Dear Tammy - As I was reading your message I was thinking that this must be one of the hardest things to deal with - adjusting to changes with a loved one who is experiencing dementia while trying to help them as they experience their decline in functioning . . . . it's also doubly hard because your friend may not be able to express what she's feeling and certainly not what she needs from you and her family to make it through this process.

I agree with Mike, that helping her family by providing information through internet resources is good, that the course of her disease process may make it such that she may no longer be able to adequately care for herself and decisions will be made on her behalf for her own safety, that a family member at some point in this process attains Power of Attorney for her and that this person stays connected with your friend's physician so that they know exactly what their mother's needs are, physically/mentally/cognitively and how they can best make decisions on her behalf when the time comes, that all of these things are enormously important . . .

I also agree that trying to meet your friend where she is now - perhaps not as you once knew her - is so important. Trying to talk with her at the level that she seems to understand you, reflecting with her about your friendship through the years, and reassuring her that you are and will be there for her - all these things are gifts to the friend you once knew and know now.

Please take care during this time and let us know how your friend and you are coming along - we are glad that you have this shared friendship and we're happy to hear that friends like you are around - the world needs more of folks such as yourself!
Barb Davis


Posted on 2005/5/9 13:57




normal Re: Friend with dementia is dying and not dealing with end of life issues

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2005/5/17
From: India
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Hi Tam,
Its unfortunate that your friend is doing this. The reasons for such behaviour are multi-fold and are rooted in her past. Unless she has the comfort of having someone close to her with whom she can share her thoughts, it is going to be difficult for all of us. You should take an extra step of gaining her confidence and enter her comfort zone in your own ways without intimidating her. If god wills, she will be ok and have a healthy death too. We will pray for her while you get closer to her and get her talking or atleast listening.
Take care of yourself too.


Posted on 2005/5/20 2:26


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