help please with decisions!

[therese]

My husband is 83 and I am 77. He has had an Alzheimer's diagnosis for roughly 9 years and I|am his sole carer. He goes to daycare on one day a week beween 10 and 3pm and I have a volunteer who comes to sit with him on one evening a week. He is not physically aggressive so I am very lucky there. However, what I am finding terrible to deal with is his inability to deal with toileting although he is not entirely incontinent. He wears pull-ups but I invariably have to clean him up and am also finding wrapped unpleasant items in many places. I'm sorry but this is making me heave! It has been getting worse over the past year. I am just keeping my head above water but have already visited carehomes as I think I am reaching a point where I just can't cope with this and with his undecipherable language. I change my mind a dozen times a day as to whether the time has come to take this ghastly decision. He has 3 lots of respite stays since July and I have another booked for the week after next without which I simply couldn't cope.
I know this has to be my decision, although my two sons who do not live near are extremely supportive. I just need to hear how others have coped in these circumstances. Thanks so much.

 

[Beate]

It's all about our personal lines in the sand. My OH was doubly incontinent as well and I coped with it, but my line in the sand was when he completely lost his mobility. We lived in a third floor flat without a lift, which would have made both of us housebound. Physio didn't help so the only choice was a nursing home. I didn't do it lightly, but I also have a life that I wanted to live.

If your line in the sand is his bowel incontinence, then there is nothing wrong with it. It is difficult to cope with at the best of times. It has to be your decision, but if you cannot cope anymore, please don't feel guilty. We can only do so much as one person, and we have a right to our own life as well.

Best of luck.

 

[Casbow]

My husband is 83 and I am 77. He has had an Alzheimer's diagnosis for roughly 9 years and I|am his sole carer. He goes to daycare on one day a week beween 10 and 3pm and I have a volunteer who comes to sit with him on one evening a week. He is not physically aggressive so I am very lucky there. However, what I am finding terrible to deal with is his inability to deal with toileting although he is not entirely incontinent. He wears pull-ups but I invariably have to clean him up and am also finding wrapped unpleasant items in many places. I'm sorry but this is making me heave! It has been getting worse over the past year. I am just keeping my head above water but have already visited carehomes as I think I am reaching a point where I just can't cope with this and with his undecipherable language. I change my mind a dozen times a day as to whether the time has come to take this ghastly decision. He has 3 lots of respite stays since July and I have another booked for the week after next without which I simply couldn't cope.
I know this has to be my decision, although my two sons who do not live near are extremely supportive. I just need to hear how others have coped in these circumstances. Thanks so much.

I think you have done so well to keep him with you, with all that is happening. I had to give my lovely husband up because of the double incontinence. If he had let me help to clean him, I know I could have kept him with me for a lot longer. but he used to fight me and I will not even try to tell you what that was like. So he has now been in a nursing home for 18 months and although it took a long while for him to settle he is, (I believe) as happy as I can hope for. The pain of having to do this is still with me, but in the end we are not superhuman and if we don't get help we will be the ones that end up ill, and no use to anyone. I know you will make the right decision and I wish you lots of love and hope you find a good home not to far away.xxx

 

[maryjoan]

My husband is 83 and I am 77. He has had an Alzheimer's diagnosis for roughly 9 years and I|am his sole carer. He goes to daycare on one day a week beween 10 and 3pm and I have a volunteer who comes to sit with him on one evening a week. He is not physically aggressive so I am very lucky there. However, what I am finding terrible to deal with is his inability to deal with toileting although he is not entirely incontinent. He wears pull-ups but I invariably have to clean him up and am also finding wrapped unpleasant items in many places. I'm sorry but this is making me heave! It has been getting worse over the past year. I am just keeping my head above water but have already visited carehomes as I think I am reaching a point where I just can't cope with this and with his undecipherable language. I change my mind a dozen times a day as to whether the time has come to take this ghastly decision. He has 3 lots of respite stays since July and I have another booked for the week after next without which I simply couldn't cope.
I know this has to be my decision, although my two sons who do not live near are extremely supportive. I just need to hear how others have coped in these circumstances. Thanks so much.

I echo what has been said - it is the lines we draw about our own lives. I have been with my partner for 8 years which is not enough time in the bank, to draw on strength for the battle ahead. I have drawn 4 lines which I think are reasonable..
1) When he does not know me
2) When he becomes incontinent
3) If he becomes violent
4) If/when he becomes unable to walk - he is 6'2" to my barely 5' - I cannot manage him.

Those lines are all equal in importance. I still love him, but I cannot cross those lines.

Do not feel guilty at all, and the fact you are thinking like this, tells you your answer, I feel.

Good Lucki

 

[jenniferjean]

1) When he does not know me
2) When he becomes incontinent
3) If he becomes violent
4) If/when he becomes unable to walk

I think that is reasonable and I may well follow these lines as well

 

[Norfolk Cherry]

I took the decision with regards to my mum when she couldn't stay in her own home "because it was a prison". I could have chosen to leave my husband and live with her, but I didn't. (He didn't want to live with her, and TBH, neither did I) So I opted out before many people did. I feel heavy guilt and deep sadness at times, but visiting and caring from a distance helps. I've told him I want to be put in a home sooner rather than later if it happens to me, and for him to visit no more than twice a week and have a life. I feel this very strongly and certainly wouldn't want him to be dealing with my incontinence. He feels the same. Take care

 

[Spamar]

It’s not that easy, maryjoan.
OH had a couple of times when he didn’t know me, so I said his wife had to go out and had asked me to look after him, and she would be back at her normal bedtime ( he went to bed quite early then). And when I got into bed, he knew I was his wife and was pleased to see me.

Incontinence was one of mine as well. But it only happened occasionally and he never smeared the stuff around!

Violence, can only agree. But the couple of times it happened he had delusions and hallucinations. Medication put that right! Plus you wonder how this frail old man can find the strength!

Falls, yes. One Easter he fell twice and had two fairly obvious Tia’s, necessitating A&E. An Easter not to forget! Ten days later, he was in a care home for respite which turned into permanent.

So, for me it was only clearcut beforehand!
But good luck, anyway. Just don’t be too dogmatic about these things!

You know how things come back and bite you? I was advised by a senior nursing sister to do my SRN, as it was then. I said I couldn’t because of the -atrics, paediatrics and geriatrics.
Little did I know that 35 years later I’d get to look after both, in one neat package!

 

[maryjoan]

It’s not that easy, maryjoan.
OH had a couple of times when he didn’t know me, so I said his wife had to go out and had asked me to look after him, and she would be back at her normal bedtime ( he went to bed quite early then). And when I got into bed, he knew I was his wife and was pleased to see me.

Incontinence was one of mine as well. But it only happened occasionally and he never smeared the stuff around!

Violence, can only agree. But the couple of times it happened he had delusions and hallucinations. Medication put that right! Plus you wonder how this frail old man can find the strength!

Falls, yes. One Easter he fell twice and had two fairly obvious Tia’s, necessitating A&E. An Easter not to forget! Ten days later, he was in a care home for respite which turned into permanent.

So, for me it was only clearcut beforehand!
But good luck, anyway. Just don’t be too dogmatic about these things!

You know how things come back and bite you? I was advised by a senior nursing sister to do my SRN, as it was then. I said I couldn’t because of the -atrics, paediatrics and geriatrics.
Little did I know that 35 years later I’d get to look after both, in one neat package!

As I said, I have not got a life time of memories to sustain me with what I am doing now. Just 8 years and for 4/5 of those this dementia has been sneaking up on him. In addition he also has a stoma and bag that he totally does not understand, and thinks that is why he has no driving license now! The op for the stoma was just 3 weeks before the dementia diagnosis.

I have been a carer since 1980 when I fostered a little girl with very bad spina bifida and hydrocephalus then a little boy with cerebral palsy from the age of 4 months till he died at 13. I brought up two step children - one with Aspergers and the other with ADHD and borderline personality disorder.

With my OH - who I do love dearly - I get no support emotional or otherwise from his daughter, and little from his son. I am doing this on my own. I have lost my career, and my income. My own health is suffering because of my caring role.

I am not being dogmatic - I have just drawn a few lines for myself, because, as others have said, we do have a life at the end of it all.

There is no respite round here, which horrifies me, as 30 years ago I spent 5 years campaigning for Children's Respite ( with other parents) and we achieved it. Now decades later I find myself once more in a caring situation - but again without respite.

As I say, not being dogmatic - just being realistic for me.

 

[karaokePete]

I understand completely what you say about not having a lifetime of memories to sustain you @maryjoan.

Like you, I had only been with my wife for a few years when the issues that culminated in her dementia diagnosis began to appear.

I don't have any 'lines in the sand' and have already had to cope with times of incontinence, failure to know who I am and nasty name calling etc. Luckily these things have not become permanent issues yet so I have been able to handle the emotional turmoil, even though it has been hard work each and every time.

I have often read comments that say members have been with their partners for 30-45 years and felt a bit envious of the strength that that must provide. However, maybe it increases the heartache too. Either way, I understand your position.

 

[maryjoan]

I understand completely what you say about not having a lifetime of memories to sustain you @maryjoan.

Like you, I had only been with my wife for a few years when the issues that culminated in her dementia diagnosis began to appear.

I don't have any 'lines in the sand' and have already had to cope with times of incontinence, failure to know who I am and nasty name calling etc. Luckily these things have not become permanent issues yet so I have been able to handle the emotional turmoil, even though it has been hard work each and every time.

I have often read comments that say members have been with their partners for 30-45 years and felt a bit envious of the strength that that must provide. However, maybe it increases the heartache too. Either way, I understand your position.

Thank you @karaokePete - I was burnt out with caring before all this happened. I had found the love of my life, just to have it snatched away after so few years - I think my deepest feeling is one of utter disappointment.....

 

[AliceA]

I think every situation looks greener on the other side of the fence.
The reality is that every thing has two sides too, nothing is how it may seem from afar.
Pete is right, many of us in long term relationships have not known much else, ours is sixty plus years.
It is like a shelf of books, many volumes with the same covers. There is a lot to dip into and this gives resources to support the current volume.
I am grateful for this.
The challenges are not better or worse just different.
It seems so terrible for younger couples, we did have the advantage of some retirement together.
Then perhaps if I were younger I could physically do more. I try not to think about the time when I might not manage.
One thing I learned the hard way when I was very young is that expecting leads to disappointment. Hope, make a plan but never expect. Life has its own plans to fulfil.

It is a Catch 22. For most of us.