Not Coping

[emscub]

I haven't had a chance to contribute to the site for a while as things seem to be so hectic at the moment. I think my family and I are pretty much feeling as though we're not coping at the moment and don't know what to do.

We've been decorating in our second lounge for the past three months and so we've all been stuck in one room together for this period, with my Nan (who hasn't left the house in months) watching television and me, my sister and our partners trying to do University work and my parents trying to have some rest after work! I think we're all at boiling point (except my Nan) although hopefully we'll get the other room back soon which will hopefully help.

Things seem to be getting more and more difficult with my Nan. We now have an occupational therapist as our only point of contact so we've been blessing her with all our troubles. The only problem is that all she seems to advise are solutions that no longer work - leaving notes etc. Has anyone else had this problem?

My Nan has been given pads for her incontinence problems but will NOT wear them. She prefers to use toilet roll instead and no-one knows what to do about it. Does anyone have any suggestions?

The occupational therapist is taking my Nan to our local Alz society day centre tomorrow for the first time, and no-one is mentioning this to my Nan as she gets so distressed when she's asked if she wants to go anywhere. My Mum's brother (who doesn't visit) advised my Mum to explain to my Nan that she needed a break and ask her if she would go into respite so that my parents could go on holiday - they haven't been away for three years - and my Nan just gave random answers. She stated that she didn't have enough money to go and that she needed a holiday too. We're all worried what will happen tomorrow.

We had to fill in a daily living activities scale for the occupational therapist the other day and we realised that my Nan can barely do anything for herself any longer. In a conversation with my Mum the other day, she revealed that she doesn't know how many children she has, doesn't know what relation my Mum is to her, and doesn't know what relation me and my sister are either.

I think the problem is that, because she has vascular dementia, her social skills and scripts for different situations have remained largely intact, which means that when people arrive to the house, she appears far "better" than she really is. She cannot actually participate in a conversation, but she is still able to reproduce obvious statements to these people.

I'm sorry to go on for so long but I feel as though there's no one else to talk to! As vascular dementia progresses through mini-strokes we could be dealing with this for years yet.

 

[Brucie]

"we could be dealing with this for years yet" .... that's the horror of it all, isn't it - not knowing how long it is all going to take?

Frankly, it sounds as if you are all doing an amazing job under impossible circumstances, so at least stop for a minute and give yourselves a big pat on the back.

Some comments:

"The only problem is that all she seems to advise are solutions that no longer work - leaving notes etc. Has anyone else had this problem?"

These people do an important job, but most have no experience of the condition outside the job. They can walk away after a visit when they may have run through a list of things that they have been told may work in some circumstances, but which may be totally useless for the person concerned. Not their fault, but we can't walk away!

I tried the notes thing, but it never worked for Jan. [I keep notes all the time for myself now, so something stuck!]

"She stated that she didn't have enough money to go and that she needed a holiday too."

The money thing is a frequent worry for the patient. The way I always coped was to say that it [whatever 'it' was] had already been paid for, and there was no need for any money. Worked most of the time. Or try "they will send the bill later".

"we realised that my Nan can barely do anything for herself any longer"

This is also common. We who are closest to the patient see them every day, and we make allowances for each little change that happens. We automatically start to do things they would have done before. Over time, the changes build up and it is only after a break of some sort that we can see that there has been substantial deterioration.

I have found that keeping a diary has helped me track changes. I check back to the equivalent time in the previous year and am sometimes shocked at how 'good' Jan was then - at a time when I thought she was really bad.

" she is still able to reproduce obvious statements to these people. "

yes, this does seem to be the case for a long time. I told Jan last week that it was my birthday at the weekend and she said "wow!" Just a motor reaction I guess, but maybe not... there is no way of knowing, of course.

Do keep talking to Talking Point!

Best wishes and hang on in there!

 

[Kriss]

"Explaining" is one of those areas isn't it. Sometimes explanations are difficult to follow when you've got all your wits about you - there was very little hope of an explanation making any sense to Dad. We used to make "suggestions" over a period of time - until sometimes the suggestion was accepted. Maybe a little deception about the respite care would be justified? Would she know the difference between a holiday and being in a care situation?

The money thing keeps cropping up with my Aunt but I'm convinced its an excuse to try and convince someone to take her home. When in hospital and now in the home she often says (or tries to) that she needs to go and get some money and sort things out. We just keep saying that everythings sorted and didn't she do well setting up all the direct debits for her bills etc. She loses the thread more quickly now than a few weeks ago and we move the conversation on.

"Reproducing obvious statements" opened my eyes to something I hadn't registered before. I was a bit slow there wasn't I. Aunt has been a master at it and still is!

 

[emscub]

Thankyou for taking the time to reply Brucie and Kriss, I think it sometimes just helps to get it all out and writing it down semi serves this purpose. I did think about keeping a diary, but have never got around to it. Things always seem so hectic. Well, I e-mailed one of my tutors this evening to ask for a couple of days extension for my current report as it's been so difficult to study when we're all cooped up in one room (with the t.v permanently on!). I forgot to mention - I got a first for the essay on how memory is affected in alzheimer's by the way! I think this message board must have helped so thanks all!

As my Nan was so upset last time we mentioned her going outside this house, we have decided not to tell her about her visit to the day centre tomorrow. I've got a sneaking suspicion that she'll like it once she'll get there, however I also think she'll be immensely confused as she hasn't left this house for so long and with her toileting needs she is bound to get herself wound up.

She really is very hard to deal with sometimes. She's not aggressive in any way shape or form, just still refusing to accept that she needs any kind of help. In her mind everything's fine, and when the O.T mentioned to her that she was visiting in order to discuss her memory problems my Nan dismissed them as something that happens when you get older.


I won't be here during the day tomorrow but I can't imagine what it will be like without my Nan here. Very strange.

I'm starting a voluntary placement with MIND this week, and a research placement at a local hospital next week that specialises in dementia, so I might have some more information to share with people over the next few weeks!!

 

[Kriss]

Keep offloading - I wish I had discovered this site when Dad was poorly. I've only been into it for a week and I couldn't have imagined how much it would help. I have the "luxury" of time to login now that Aunt is safe in a home and a little time to take stock of what has been happening over the past very hectic 6 month period. I can't believe that pre Christmas the only doubts we had were over her ability to drive!

Not sure what the difference is between vascular dementia and multi infarct which is Aunts diagnosis. She has deteriorated in significant steps as opposed to the very gradual deterioration that Dad went through. I believe that Aunt could settle at this level for some time (particularly as she is eating regularly and having full time care) so even though her deterioration has been very rapid to date there appears to be no way of knowing how long her torment will continue.

I know the studying will be a struggle but I hope it will allow you to switch off at times from "here and now". Very best of luck Emma!

 

[Norman]

Emscub

I tried the notes but the only one that ever worked was the one hung on the wall at the foot of the bed and it showed the day.
I changed it every night,to be seen in the morning, but of late even this one is failing.
So many similarities again in your descriptions,my wife never admits that there is anything wrong except to say "I have a terrible memory"I sometimes think outsiders think I am enlarging on my wifes condition ,she is so lucid and unless she is asked searching questions it is difficult to detect any thing wrong.
I often feel I am not coping but I have said before there are good days and bad days,on a bad one remember a better one WILL come.
When things get too bad cry,swear,shout and any other outlets that bring relief,remember none of this will be rembered only by you.
Best wishes
Norman

 

[Brucie]

I agree that people not very closely aware of the day to day realities of the situation may often think we are overstating the problems. We also compound that, as, like it or not, we try and minimise those problems when people visit. Who normally wants to highlight their partner or relative's problems?

I know I always felt most disloyal if I wasn't trying to cover absolutely as much as I could of Jan's deterioration. I hated myself when, at consultations, I had to tell the story as it really was - particularly when Jan would look at me, wondering if I had gone off my head.

So what most people saw was an abnormally quiet Jan, who wold talk only when addressed, and would give short, stock, replies. This they interpreted as her being withdrawn. When the doctors saw this they thought it was purely depression.

The reality was that we were both already struggling to keep our heads above water.
Best wishes everyone,

 

[Norman]

Bruce
how right you are .
We do try to cover up and keep our problems to ourselves.T he feelings of disloyalty creep in even when we are asked "how is your wife"I feel so guilty discussing her as if I am letting her down.
People without knowledge of AD do not understand
Norman

 

[Kriss]

Disloyalty, betrayal - over and over I have asked myself those questions. We corresponded with the specialist by e-mail prior to each visit as we couldn't face discussing the symptoms with Aunt present. By doing so we probably poured out much much more than we would have ever spoken. It definitely helped him with his diagnosis but when the time came and he instructed us that there was no alternative to moving her into care I kept on asking myself if the outcome would have been any different had he only had the limited picture that he was most used to seeing. Had we forced the issue, was it my fault, could she have gone home just for a little longer?

Of course, when I am thinking logically and sensibly then I know that we did the right thing, but it goes against the grain doesn't it.

Another way to look at it Norman is - what do you nearly always say when asked how YOU are? Fine, ok, we all do it - its a built in response, almost a way of trying to con ourselves into feeling a bit better! If we don't say it out loud then maybe its not really happening to us!

 

[Brucie]

A question I had to ask of myself many times was "am I doing what I am doing [managing her care at home] for me - or for Jan?"

With the benefit of time I can see that I probably held on to Jan at home for a tad longer than I should have. But then that's how things go.... the old adage of a final straw breaking the camel's back. It takes just one more 'something' to tip the balance.

We know that life will never be quite the same once care is managed by others, so we do all in our power hoping to maintain even a poor situation at home.

The transition from home to a care home is painful in different ways for patient and carer.

"Disloyalty, betrayal" - if we didn't batter ourselves with these thoughts then we probably wouldn't have been doing the caring role in the first place. It shows you care.