The Long GoodBye

[PalSal]

Hi all,
Another year into our life with Alzheimers. As some of you may remember, my husband was 49 when he was diagnosed. He is now 63. I am grateful for all the things my husband can still do. He still gets dressed (I must be sure he wears fresh clothes-but he can still put them on) he can bath and use facilities himself, seems to know all the immediate family and friends. His command of words is lessening, but then from time to time I forget my words. He was always a quiet man, so most people do not really notice. Or perhaps it is me who just does not notice the change as I have been living with the slow decline for so long. I joined talking point in 2011, I think.

But I have a new issue. He decided to stop taking his medication. He said he was feeling odd and different and felt it was the meds. I give him his meds each day. and he started spitting them out without my knowledge. He is on 15 mg of Aricept (increased from 10 two years agos) Gingsing twice a day. and some other Chorlesterol pills and stuff. But of course he is just spitting them all out---no knowledge of which pill is which. I was very shocked to discover that he was spitting them out and putting them into an old eyeglass case.
But I have been told it is highly unlikely the Aricept (by a doctor from the Memory clinic) provides any benefit at this time. So, my question is what to do next. As he is off all meds now, I am very tempted to keep him off everything and see where it takes us. He no longer wants to see the professor at the university as last year the professor would not support him continueing to drive. But he does trust our GP who is a good person, but not an Alz expert like the professor. (our two daughters are both doctors also) So, we will discuss the situation.
He does have some anxiety in the evening (searching for missing items) and sundowning. But we manage without meds--and I had resisted meds for this as I did not want side effects, but now they are suggesting he take Gabapentin for anxiety associated with dementia. Has anyone used this?
He has only been violent with me two times in all this time. And it is when I insisted on something and he felt bullied. So, if he does not want his meds, I will not insist.
He is still very very active. He walks a minimum 4 times per week. Twice with a paid carer, once with a volunteer and once with a friend. And if I feel up to walking on the weekends, I take him. I think this has been the biggest benefit to his well being of anything. It makes him tired, gives him an appetite, and gets him out in nature which he loves.
But everyone seems to think I should continue to give him all these meds and I feel there is no point. What difference does if make if his cholesterol goes up...does it matter. I think not.
So basically, I still read many of your entries , but I do not often comment. Its been a long haul for me and I stay in this 24 hours and out of the future, as I can see from your entries that the future may not be too good. But today I think all is ok. His carer will come at 11 for a 3.5 to 4 hour walk and I will have the house to myself.
Take care all.

 

[DeborahBlythe]

Hello PalSal, I'm sorry to hear about the worries over your husband's medication. Do you think he would take them if someone else administered them, like a carer? Would he be more compliant with someone from outside the family?

I expect your daughters, as professional women would be very busy, but are you able to discuss their father's preferences with them to see what help/suggestions they might be able to offer?

I'd be nervous about stopping all medication, but if your husband still has capacity to make rational decisions he still might benefit from someone reminding him what the consequences might be.. I'm guessing that stopping the anti cholesterol medication might put him at increased risk of heart attacks and strokes.

 

[Grannie G]

Hello PalSal

Your husband sounds amazing and so do you, to have managed so well for so long.

I know the time came when the medication my husband was taking did not seem to have any effect but there were symptoms which supported this and he was going through a much later stage.

Perhaps if you discussed your husband`s `odd and different ` feelings with his doctor, it might show the doses of the drugs need tweaking or even changing completely. Your husband might accept that as a valid explanation and be willing to continue taking them.

 

[Bunpoots]

I'm never really convinced that medication can be trusted to do what it's supposed to do. If I were in your shoes I would let the PWD not take their medicine BUT I would want to do as much research as possible and talk to the memory clinic doctor ASAP.

You can't force anyone to take meds and reading on here it's obvious that they can have unexpected consequences, even after years of working well.

Perhaps the doctor could introduce a "new" pill for anything that's really important. You can only do what you both feel is right.


Sent from my iPad using Talking Point

 

[Grannie G]

I`ve just remembered.

My husband began to refuse his medication and I found out he was having problems swallowing. Some of his tablets were quite big.

It might help to check this out.

 

[lemonjuice]

Iwouldn't over-worry about meds

Unlike others I wouldn't worry too much if your husband is refusing to take his meds. Though I would inform the Dr/ Health provider of his decision. It is always their 'right' to 'make their own decisions', even if it's a decision not in their best interests. Even the Home realise that and just note any decision or 'inform the Staff Nurse'.

Plus my mother has had no medication of any sort for over 2 1/2 years now. Dr didn't see the point and so the only thing she takes is paracetamol 3 x a day, in case she is in pain, as she can't tell anyone any more and rectal daizepam when she has her seizures. She had a heart attack years ago and has had problems with Bradycardia but stopping the medication hasn't resulted in a stroke or heart attack. (Either would actually almost be a blessing in the condition she's in.)

 

[Trisha4]

Hi Palsal. Yours has been a long road. I agree with the idea of not giving medication if that's his choice but I would inform the GP and ask if there is any damage that could do. If there is something essential could you crumble it into something. I'd also tell your daughters just to put yourself in the right for the future. I wish you and your husband well as we go into a new year.


Sent from my iPad using Talking Point

 

[PalSal]

I`ve just remembered.

My husband began to refuse his medication and I found out he was having problems swallowing. Some of his tablets were quite big.

It might help to check this out.

Very interesting point!



Sent from my iPhone using Talking Point

 

[PalSal]

Thanks for your suggestions

Thanks to each of you for communicating.
I appreciate the suggestions and comments to reconsider.
Good stuff that is why I keep posting.

 

[Mal2]

My husband would spit his meds out too. For the past 4 years I have ground them in a pestle and mortar, and mixed into a flavoured Fromage Frais or yoghurt, without him knowing. I have had no problem with him taking meds since, perhaps you could try this. I hope it helps.

The Doctor said it was ok to deliver his meds this way.

 

[Scarlett123]

Fourteen years is a very long time to have to cope with this awful disease. I looked after John for nearly 12, and he was then in a Care Home for the last few months, so you have done magnificently to have coped for such a long time..

John would sometimes spit his tablets out, but as he had a variety of other diseases, I continued to give them to him, but bought a little device which crushed them, and I could them add them to his food.

I wish you a peaceful New Year xxx

 

[PalSal]

Stream of Consciousness/Made the appt to see the GP/Mixed bag

Hello TP-
We made an appt to see the doctor on Friday. this will give the GP time to consult with the Professor. As I said my hubby no longer trusts the lovely professor, so now I will go to the GP who I like but she is not an expert.
Our daughter who lives here will go with us. She is very good.

I can no longer see what helps and what doesnt. I can no longer see, the decline is gradual and I cannot see clearly where we are.

I just go along.

We are really part of the Early On Set group the under 65, 14 years and we are still under 65!! I get such huge resentments when I read about people on TP talking about over 90s with Alz or dementia. Yes, I want to be understanding but I do not feel understanding. I think what do people (carers) think, the body and mind cannot last forever. It is hard whenever one is demented but somewhat expected at 90 than in ones 40s. I just feel that the losses of the Early On Sets are so severe and life changing; devasting financially, young children losing their parent to the disease (my youngest was 11), young children having to help care for the parent.....

I am sure people will think I am callous to say these things but this is TP and I have to get it out somewhere

I have to try to stay positive. But I feel like it has been such a long haul...but the alternative is not good either. (The alternative is the worsening of the disease and possibly institutions and eventual death.

So, I will get mindful now and prepare dinner this morning because if I do not do it now I have no energy later.

I starting taking down the Christmas decorations yesterday. Today the carer/ helper will come to walk with OH and he will help me take stuff to the garage. I am grateful to have some help.

Sent OH out to sweep the snow from the steps then I must LET GO and whatever he does or doesn't do is ok. It keeps him occupied for awhile and feeling productive. I here is now back inside. Didn't last long.....I doubt it got done.

 

[Grannie G]

I doubt anyone will think you callous PalSal, your story is tragic especially as you are both so young. You are worn out and still under 65, it`s dreadful for you and even more heartbreaking for your children.

90 year olds are still valued family members and although logic tells us people cannot live for ever, watching suffering and taking responsibility for caring is distressing whatever the age.

I hope you will continue to stay in contact with TP. No one can solve your problems or make life easier for you but there will be a wave of support and understanding which may help you feel less isolated.

Six years after diagnosis and possibly 12 years after onset my husband lost his mobility. It amazes me your husband can even attempt to clear the snow.

 

[Scarlett123]

What a lousy hand of cards you've been dealt PalSal. The fact you've looked after your husband for so long is, in itself, wonderful, and demonstrates such tenacity, but the awful fact that you are still both under 65 is very, very hard.

I don't think you are at all callous. I've often spoken of my envy when I see couples who are unaffected by this dreadful disease. I was even envious at the bereavement group I attended, when other people spoke of their loved ones dying from other illnesses, and when they said, for example, "she was ill for 8 months, and I looked after her day in, day out" I thought they were lucky.

My husband was 64 when he was first diagnosed, and I was, and still am envious that he was robbed of a long and happy retirement, and of course, so was I, so I cannot imagine how you must be feeling. Your circumstances are indeed tragic.

There is nothing anyone can say or do to improve your situation, but at least here on TP, you can vent your anger, and tell it like it is, and know that people will understand.

 

[PalSal]

Thanks for answering

I doubt anyone will think you callous PalSal, your story is tragic especially as you are both so young. You are worn out and still under 65, it`s dreadful for you and even more heartbreaking for your children.

90 year olds are still valued family members and although logic tells us people cannot live for ever, watching suffering and taking responsibility for caring is distressing whatever the age.

I hope you will continue to stay in contact with TP. No one can solve your problems or make life easier for you but there will be a wave of support and understanding which may help you feel less isolated.

Six years after diagnosis and possibly 12 years after onset my husband lost his mobility. It amazes me your husband can even attempt to clear the snow.

Many thanks for your perspective, when I am feeling rational and kind, that 'watching suffering and taking responsibility for caring is distressing whatever the age.'
Thank you for reminding me not to judge and to be more aware and compare less. That is why I come here

 

[PalSal]

Thanks Scarlett

What a lousy hand of cards you've been dealt PalSal. The fact you've looked after your husband for so long is, in itself, wonderful, and demonstrates such tenacity, but the awful fact that you are still both under 65 is very, very hard.

I don't think you are at all callous. I've often spoken of my envy when I see couples who are unaffected by this dreadful disease. I was even envious at the bereavement group I attended, when other people spoke of their loved ones dying from other illnesses, and when they said, for example, "she was ill for 8 months, and I looked after her day in, day out" I thought they were lucky.

My husband was 64 when he was first diagnosed, and I was, and still am envious that he was robbed of a long and happy retirement, and of course, so was I, so I cannot imagine how you must be feeling. Your circumstances are indeed tragic.

There is nothing anyone can say or do to improve your situation, but at least here on TP, you can vent your anger, and tell it like it is, and know that people will understand.

Thanks for your reply. It is good to know that I am only one of many and I do have these ungenerous thoughts from time to time. But I can move off that place with the input of others. Thanks for that.