so many questions to ask you all about...

[eden]

My mother (70) has mid stage Alz, my father is her carer and is giving me more grief and trouble than mum's condition. He is proud, private and refuses to accept help on any level and is driving himself into the ground. I have only recently found out that he has been dealing with incontinence for a year and hiding it (and refusing to get any pads or anything to assist with it). Mum is supposed to be on anti-depressants and sleeping pills, both of which he keeps taking her off, putting her back on... and wondering why shes vomiting and has diarhorrea. But he knows best - he is also stockpiling the tablets which is worrying me in itself.

I'll ask just one question today though if I may....
To relieve the pressure on dad, I have insisted on having mum every Monday at my house. Has anyone any suggestions what I can do to keep her amused and stimulate her a bit??? She has a double-whammy in that she has a progressive disease of her nervous system and as a result doesnt have any feeling in her hands or legs and can only stand with a stick and a supportive person, therefore a lot of possibilities are eliminated.

Yesterday I sat her by my side in the kitchen and tried to get her to help me make a cake but she kept saying she didnt want to and it was like I was punishing her by asking. I also started trying to do a scrapbook and finding pics in mags she liked to paste in, but every time we found a pic she liked she cried. Looking at old family photos, animals or children - although these are the things she responds to - are the things that make her cry. In fact she cried pretty much all day yesterday and said 'I 'm scared ' & 'I want to go home' constantly. I'm also getting called the cats name now - thank goodness the cat is called Katie and not Tiddles.

Sorry to be long winded but help appreciated, I want to spend 'quality' time with her, I dont want to dread these Mondays.

 

[Brucie]

You have raised a number of important points in your message.

"my father is her carer and is giving me more grief and trouble than mum's condition"

That's common. After all, your father is desperately trying to care for her seven days a week, 24 hours a day, and he believes he is protecting her by trying to make her appear as totally normal.

Take over the care from him on that basis and your mother will soon give you the more grief!

"he keeps taking her off, putting her back on [medication]"

That's common as well. Doesn't mean it is a bad thing - as long as he is letting the doctors know. Also doesn't mean it is a good thing. He's just trying to understand her condition and respond to it, based on his minute to minute knowledge and observations.

"he is also stockpiling the tablets which is worrying me in itself. "

I also kept a large stock of my wife's medications, not for her, but to use myself, in extremis. You get that desperate, so be aware of it! Probably best to remove them, on all counts!

He may just be scared he needed extra because he might run out some time.

"Has anyone any suggestions what I can do to keep her amused and stimulate her a bit"

I can't help here as I tried everything with my wife, and nothing worked. I changed to touching and talking and walking around the garden, when she would do that. You may need to accept that there's not much you can do. It is one of the many difficult things.

"'I 'm scared ' & 'I want to go home' constantly"

Again, that is common. She no longer recognises familiar things. Do you wonder she is scared? Cuddle her and tell her you will always be there for her. That's the most I could do.

"I'm also getting called the cats name now - thank goodness the cat is called Katie and not Tiddles"

Yes, and I am "Car", short for Caradoc, our Abyssinian cat's name. I've grown to like it! At least she knows I'm there with her, she just gets the name wrong.

"I want to spend 'quality' time with her, I dont want to dread these Mondays."

"quality" is a relative term and what makes for that will decrease over time. You have to seek what quality you can squeeze from your Mondays.

Sorry not to be upbeat, but I don't want to minimise the situation you - and many of us - are in.

One thing - Give some special attention to your father too, he needs it!

 

[Jude]

Your father

I think Brucie has a good point here.

Perhaps you need to help your father come to terms with your mother's illness by spending a bit of time with him too.

Perhaps some walks with him now the weather is reasonable, when you can discuss your mother's problems away from the immediate drama of his constant worry. Being out in the fresh air will do him good and you'll be able to help him by being in a private moment for the both of you.

Both of my parents have Altzheimers and I do try and split them up so far as possible, so that I can have a bit of time that is special for both of them.

Best wishes, Jude

 

[Brucie]

Having someone to dump out all the hurt and confusion upon is a major benefit, so I second what Jude says.

For a start, don't try to provide answers - just listen. Often his just saying things to a listener will provide solutions to things that may have been troubling him. If he asks what you think, of course, tell him.

Best wishes

 

[Denise]

Hi Eden

My situation is similar - Mum has alzheimers and Dad looks after her.

I used to think that he was giving me "grief" about her - everytime I saw him (everyday) there would be a catalogue of complaints and moans about Mum, but then I realised that he has no one else to talk to about Mum - he is far too proud to speak about her to anyone outside the family. He doesn't want me to DO anything, just wants to release some pressure. I have felt better since realising that.

The other prob is that he will still argue with her as if she is completely rational rather than just agree, and this in turn makes his blood pressure rise etc etc. I think it is a form of denial of her illness.

He's great at the practical side - giving out the medication, sorting appointments etc but really struggles to understand the confusion/depression/forgetfullness side of the illness.

Sorry Eden - no practical help but it helped (me) just typing this to you

 

[Fozz]

so many questions

I only looked after my Dad for 3 months full time while he was ill, but found it very difficult to find things to occupy him, like you. We did look at old photos, and sometimes he found them upsetting but would still keep asking to see them. We did used to talk quite a lot about the past, he could still remember his past life a
and I found out qute a few things I didn't know!

It was hard to cope with how scared he was, I used to get a bit annoyed at first because I would say I was going upstairs to clean the bathroom & 2 minutes later he would be calling me. But then I realised he didn't remember where I was, heard a noise upstairs and didn't know who was there. That must be so scary!
It took me a while to realise that I simply couldn't make him remember no matter how hard I tried, and I wasted a lot of time and effortdoing so .It is so hard to come to terms with the fact that someone you have always known as incredibly capable and "with it" can change so much, and you do find yourself treating them as the person you used to know. Letting go of that person is very hard, but in the end you have to , I think it's kinder.

My step mum said that she used to treat Dad like a child , being very kind and calm and explaining things very simply, and it did work, but she found it hard work - after all he was her husband not her little boy!

Best wishes, hope your Dad keeps on coping , having you must help him tremendously.

 

[Brucie]

I know it is difficult and a bit clichéd, but it is always a good thing[if distressing] to try and see things from their point of view.

Suddenly the world becomes a very scary place, where nothing is certain anymore, and where everyone eventually is a stranger, including themselves.

All we can really do is to make them feel a little safer and as comfortable as possible, and have them know that somebody cares and will be there for them.

And our own world evolves to become a place where something that would have seemed cruel before is actually kinder at the time.

There are huge similarities to children, and it can be distressing. The other day I was pushing a 3-year old in a buggy, just hours after I had been pushing Jan in a wheelchair for tests at the local hospital, and I couldn't help but see the huge similarity; later, the mealtime with the child was uncannily similar to mealtimes at the home.

Which brings me full circle, I guess. For a very young child, the world must be a scary place, and with no experience, nothing is certain; most people ARE strangers. And.. All we can really do is to make them feel a little safer and as comfortable as possible, and have them know that somebody cares and will be there for them.

I'm off to bed! I think I'm getting into a recursive loop here.

 

[Norman]

Eden
I can speak from first hand knowledge,I am my wife's carer and have been for 7 years.
It is common to us seniors to try and cope alone,to not admit there is anything wrong,it is hard to see your darling wife turning into someone that you hardly recognise at times, hoping that maybe the consultant made a mistake and got the diagnosis wrong.and it's all a bad dream .
I have only fairly recently begun to accept help from Crossroads and to realise that I need all the help I can get,there isn't any from family, and this is common also,just a little from two friends who have stuck with us, all the others have vanished.
Talk to Dad a lot,would you believe he is lonely,he won't have many interesting conversations with your mum and he hasn't learned yet not to try and reason with her,it doesn't work.
Give him all the love and help that you can,believe me he needs it,I Know
All best wishes
Norman

 

[eden]

and further...

All points taken on board.

Re my dad: I am doing everything I know how to be supportive and I know he is doing a great job in a dreadful situation (as many others are) its just he seems to be making it so much harder for himself than it needs to be...

What is so frustrating (and concerning) about my father is that he is doing all this independent of the doctors. About 18 months ago (after she'd been on Aricept, ended up in hospital with dreadful side-effects, and taken off again) they said there was no point in her keep going for assessments and that my dad should get on with it but contact them if he needed support - he feels none of them know what they are doing and hasnt been near anyone medical since. Currently she's hardly eaten for 2 weeks and he still won't talk to anyone - I think he is worried sick it will get taken out of his control and they will whisk her away from him into a home if he does.

Re mum: I'm not trying to encourage her to regain her memory. or push her into something she doesnt want, I realise I just have to go with the flow... but I thought all the advice was its important to give sufferers as much stimulus as possible??? Is it kind to just let her sit there all day, because thats what she would do if left to her own devices.

 

[Brucie]

"he seems to be making it so much harder for himself than it needs to be... "

It's a world of weird realities once one start to do the sort of caring your Dad is doing. One of those realities is that, where there has been a very close relationship where a couple have supported each other over many years, the carer may want in some way to share the pain, since it can't be cured. That is coupled with a huge fear that if one lets ANYONE else in on the act, the loved one will soon be taken away.

Lack of trust in dealing with doctors can be justified, as so few have first hand experience of any of this and don't know how to deal with it, and for many people, the medications just don't work, which compounds that. This is all made worse by the poor reporting of attempts at cures for Alzheimer's that is prevalent [mostly] in the tabloid press. They keep being far too upbeat on the basis of incorrect facts, but they know that sells papers.

Issues with food can bring things to a head. My wife's weight dropped massively although I was doing all sorts of things and cooking all the time to cope with her food needs, and, as we always shared everything 50/50, as her appetite lessened and I adjusted food quantities to allow for that, so my own intake dropped as well and my own weight started to diminish. Since going to a home, she eats more than I do and adores her food.

If you point out to your Dad that specialist help is necessary for the feeding then he may respond. The sad fact is that he WILL lose your Mum to care at some stage. He needs to ensure that when that happens, he himself is in good enough health to support her in whatever home she then lives in.

Her needs for his visits will probably be overshadowed by his need to visit her. Once a primary carer of some time loses the person they were caring for, they suddenly lose their role in life, at least for a period.

About trying to stimulate your Mum - of course do try! But be aware that it may not be easy or even possible. Don't blame yourself if nothing works and the two of you do end up sitting in chairs. If that happens, keep on talking even if there is no apparent response; one 'benefit' of dementia is that you can have a 5 minute script and keep repeating it... Just your presence doing that will help her. Stimulation can be as simple as feeling that one is not forgotten, or alone.

Try music, perhaps, and don't restrict yourself to what she would have liked in the past. Experiment with possible new tastes. That would give you something to do together.

Best wishes.

 

[janey]

quote: I'm also getting called the cats name now - thank goodness the cat is called Katie and not Tiddles
Eden, good for you for retaining a sense of humour in the midst of this devastating situation! I too am having a very similar experience to yours, recognise the frustrations you feel, and am comforted to know that other daughters are going through what I am. Mum has vascular dementia, and some days she knows me and calls me by my correct name, but then other days calls me all sorts of names, although I feel she still knows who I am in some sort of deep way. I find that simply sitting with her seems to comfort her, and after a few years of emotionally withdrawing myself (which I've since realised - with guilt - was a self-defence mechanism) I now hug her all I can even though in a way it makes it all harder - the more I hug her the more I love her, and the pain of gradually losing her is becoming more and more unbearable as time goes on and she gets worse. I realised recently that 'stimulation' such as trying to bake together, and what I thought would be pleasurable experiences such as going for tea and cake at the garden centre were actually causing her a lot of stress. Now our best times are spent sitting together or pottering around her garden. Tomorrow Dad and I are going to look at a care home for respite care (although I think it will soon become permanent care) - I still feel awful that I (an ex-nurse) cannot take the step of helping Dad to care for her, but I'm married to a busy husband who believes it would be the wrong step, although he loves Mum dearly. I've also got a place at university next year as a very mature (46) student, but although I really want to take it up, I keep feeling that caring for my beloved Mum is surely more important than my own ambition. I feel incredibly selfish and guilty, because maybe if I could care for her part of the time, Dad could cope better and then she wouldn't have to go into care.

 

[janey]

continued...

I also wanted to say that I've found Brucie and Norman's replies very helpful in helping me to see things from Dad's perspective. Dad too has a large store of medication, and did actually tell me several years ago that when it all got too bad he would 'end it'. I try to give him as much support as I can, but I know he'd like me to visit them more often (I go twice most weeks) - but I go as often as I can copoe with emotionally, and sometimes I need to recharge my own batteries in order to carry on carrying on. But ever since he spoke about 'ending it' I've felt compelled to go even when I don't want to in case my not going is the final straw that breaks the camel's back...
Sorry about this almighty rant, but its an incredible relief having people to 'talk' to who understand - its not a subject that goes down well among friends who are mostly concerned with their kids, not their parents.
Thanks and best wishes to all

 

[Beth]

I really feel for you Janey. You are feeling things that I have felt at various stages of my dads illness. I was thinking the other day that because I have been so busy supporting my mum, visiting dad in hospital, having meetings with various professionals, trying to sort out my dads financial affairs etc. I haven't really had time to think too much about the fact that I'm actually slowly losing my dad. I think I have, however, been feeling it subconciously and I'm carrying a lot of sadness around with me. There are no two ways about it, this is a brutal illness.