What should we tell her?

[Jenny]

My mother was diagnosed with Alzheimer's yesterday. She's 73 and lives on her own. My and my sisters and brother have been worried about her for the past couple of years - she asks us the same questions again and again, fails to turn up for appointments, regularly loses her keys, purse etc,

The diagnosis came after her GP referred her to the local 'memory management' service. First a consultant came to see her, then a psychologist who did a two-hour assessment in her home, with me there. The psychologist came yesterday to give the results, but didn't mention Alzheimer's, although it was clear to me and my sister that that was what it was. Later my sister rang the psychologist who said it was Alzheimer's.

Now we're in the awkward position that we know, but my mother doesn't. She knows there's a problem, and is very anxious about it, but she hasn't asked outright what it is. The psychologist said she would ask when she was ready. Should we try and tell her, or wait till she asks?

Also, the psychologist is going to recommend some drugs which can delay further deterioration. I asked what the drugs were called, but she was a bit vague about it. Has anyone got experience of these drugs?

Any advice, or comments from people with similar expereiences would be very welcome. Just reading the posts already here has made me feel better for knowing that there are people out there going through the same kinds of problems.

Jenny

 

[ripleymi]

re what should we tell her

I wouldn't tell her she has alzheimer's Jenny That will just make her fret more. My mom just turned 90 and she was diagnosed with alzheimer's 3 years ago... and promptly forgot what the doctor said! (that was probably selective memory loss!). She lives in her own apartment about 3 miles from me and I go there once or twice a day to do the pills, bills, laundry, groceries, hair appts., etc. She still cooks her own meals and is able to use the tub with the aid of the grab bars and tub chair. And she loves her soap operas and home town newspaper. Just watch out for the "safety issues"... turning off the stove, locking doors, staying indoors, elder abuse/exploitation issues, etc. Don't worry about the repetition...that's not hazardous. It just drives you crazy!!!! My mom does the same thing...but she is clever. She starts every question now by saying "I know I asked you this before.....but". She says that becaues she knows she may (or may not) have already asked and received an answer to the question (most likely she did and forgot), and she knows her memory is getting real bad, but she really doesn't want to talk about that. She's been on Aricept (5 mg, but they prefer 10 mg) for three years, along with 800 IU of Vitamin E. Now don't ask me if it helped, because how can I know that unless I could know how she would be now without the drugs. But the research supports the benefits, and my guess is it has slowed the process. She is constantly living in the past and remembering old times, and she is losing weight, but gradually, as I do make sure she eats healthy and enough. But she is just not too interested in food anymore. She's had a hip replacement and has a pacemaker and is on high blood pressure meds. And she is also depressed, along with some anxiety and restlessness at night. I took her blood pressure the other day and told her it was excellent. She said "that's too bad". She still has her sense of humor! My feeling is as long as she can live independently (and safely) in her own apartment, I am going to keep her there as long as possible. Because if she ever has to move to a long-term care facility, I know she will be joining my dad shortly thereafter. They say the most important thing when you are caregiving a person with alzheimer's is to keep your sense of humor. Don't waste your time contradicting or correcting her. Just agree with whatever she says. Easier said then done. We tend to get mad.... but we're not really mad at our mom; we're just mad because we want her to be the way she was. Here's some very good advice I found on the web:
"Caregivers can waste a tremendous amount of effort attempting to "teach" new information to patients who cannot learn, arguing about realities that differ, or "reasoning" with patients who can no longer reason." Check out www.mayo.edu/geriatrics-rst/Behav.html ....and good luck.

 

[Steve]

Hello Jenny

Ripleymi's comments must ring true for a lot of carers of those with more advanced dementia.

However, I'm not sure the same sentiment can be so easily applied to people in the earlier stages of dementia. Your mother sounds like she is still in the early stages of dementia.

Not too long ago, it was considered unkind to tell people with a diagnosis of terminal cancer that they were dying. I think most people would feel that this view was misguided, and that if it were them, they would want to be told.

In the earlier stages of Alzheimer's, people are able to take this kind of information on board, and make plans accordingly. If you know that you have a limited amount of time left, then you are more likely to take care of 'unfinished business' while you still can. This might involve taking a fantastic holiday, learning to skydive, or making sure that family and friends are told all the things that we want to tell them before we go

To have the diagnosis withheld means that these opportunities are denied. I for one would be very angry if this information was kept from me.

I have heard many people with dementia say that learning of their diagnosis came as a relief, since they thought that they were going mad. A diagnosis can reassure people that what they are going through is not their fault, and that they have done nothing to cause their condition.

Of course, your mother may be at the stage where she is unable to process the information in any meaningful or useful way. In this case it would be unkind to keep reminding her that she has Alzheimer's. However, the fact that she is being considered for the Alzheimer's drugs might suggest that she has a certain level of insight into her situation.

I'm sorry if this muddies that waters a little, but it is very important that these kind of decisions are made on a person-by-person basis, because what works for one person does not necessarily work for the next.

 

[Jenny]

Thanks to both ripleymi and Steve for your comments, both very useful. Since I posted that message things have moved on. The consultant dealing with my mother's case went to see her and told her.

At fisrt I was angry that we were not told this was going to happen, and we weren't given the chance to be there to support my mother, but now I think it's for the best. My mother , although she is understandably upset and worried about it, seems to have taken it remarkably well. She has started telling her friends, which is good, as it gives them the chance to support her. And it also means that we ( me and my siblings) can be more open with her about planning for the future etc.

I must admit that I'm relieved that someone else took the decision about what to tell her out of my hands. I know we've all got a tough time ahead of us, but at least we don't have to avoid using the A word anymore.

Jenny

 

[benny]

Re; what should we tell her

My name is benny and I am in the same place you are right now but my mum doesnt get all her results till january which seems like a lifetime away but in a way I am glad that she will get through xmas without knowing I too have suspected for nearly 3 years now and she doesnt know why she has taken all the tests for. I feel for you not knowing whether to tell her cause I tried so many times to sit down with my parents to tell what I suspected but it is the hardest thing in the world to do. I too have only just joined but having a hard time knowing how to get in the right place to get replies would you mind messaging me back so I know that someone has received a reply x x Benny

 

[Sandy]

A note to new users

Sometimes when using the search facility on TP (or if coming via search engine) a member can bring up an old thread.

You should just be aware that the date of the post will appear at the top left of the post header:



So the last post in this old thread was actually made on 16-06-2003.

Usually there's no harm in replying to an old post, but it can cause some confusion and, just occasionally, distress.

There is the potential for hurt feelings as the new post might not be responded to. For example, clicking on Jenny's name in the example above would take me to her profile page and would show that she had not been online since 2003.

Also, we do have a valued group of long-term members who have posted about their dementia journey for many years. Sometimes reading a post that they wrote several years ago, when there loved one was much fitter, can be quite distressing.

So, just as a tip, try and develop an awareness of the date the thread was created and the last post was made.

Take care,

 

[shelagh]

I was told, directly by my consultant and though it was devastating at the same time it was relief and a confirmation because really I knew. Possibly your mum 'knows'
I'm not and never have been a bible quoter but there is one line that always seems to stay with me 'The truth shall set you free'
With love
Shelagh