Decision Time

[Stewart]

My wife (57) is now at quite an advanced stage. Double incontinence, does not talk, no sense of her surroundings, not very mobile, will not drink or eat properly etc. However she is not generally aggressive or too difficult to manage from a behavioural perspective. The disease is progressing quite rapidly (5 years since the first real symptoms).

Originally I thought that I would be able to look after my wife at home but, as the realities hit, and with no family close by, I realised that long term care was inevitable at some point. I could battle on at home until the end but I think I would be doing this for myself rather than obtaining the best possible care for my wife.

It seems like the disease is always moving faster than I expect so I decided to look at care homes in advance. Most were dreadful but then I found a small home that seems ideal. The problem is that, being small, places come up very infrequently. However, they have just added two new rooms and I have to take a decision as to whether to try and get one of these rooms. I would have liked to consider this step in six months time or so but I am worried about missing this opportunity.

It is the most difficult decision that I have ever had to take. I really do not know how I will cope with the trauma of moving my lovely wife out of our home but I think that I must do it. I dread the thought of life after this. How does one adjust after so long together?

Stewart

 

[Grannie G]

Hello Stewart

You have a very difficult decision to make . In making it, please don`t wait for a crisis and remember sadly your wife has a progressive condition and this is as good as it gets.

If rooms at this lovely home are heavily subscribed and one becomes available, grab it with both hands.

 

[AlsoConfused]

It will be very, very tough indeed, Stewart.

The tone of your post suggests you really feel that if you let this opportunity for your wife go by you won't be able to find anything as good when your wife needs more care than you can provide. Sadly, you could well be right.

 

[elaine n]

I agree with Sylvia Syewart, grab it! If you miss this opportunity you may have to settle for second best if you get to crisis point xxxe

 

[piedwarbler]

If a home is full and adding new rooms that seems a good sign. Can they meet your wife's needs into the forseeable future, e.g. do they have specialist equipment or are they willing to get what they need?

I agree that if you wait for crisis as my mum did you will end up having to make a rushed decision. You cannot move too early but you can move too late, I think. You can also find that late moves are more disorienting for the sufferer than early moves.

I wish you lots of luck and remember whatever you decide it will be in your wife's best interests.

 

[Bastan]

My heart goes out to you Stewart, it is indeed a most difficult decision. I made it 6 months ago, and I am still adjusting. My husband has young onset Alzheimers and like your wife he has deteriorated far more rapidly than I had expected.

I felt emotions previously unknown when he first moved and wanted to bring him home almost daily. I cried constantly and thought I'd never recover. I found so much support on here and read and re-read other people's stories. I can't quite understand how typed words from strangers can help so much, but they do. We are all experiencing the horrors of this awful disease so have a common bond.

I just do it a day at a time and as hard as I sometimes find it, I honestly admit I could not go back to 24/7 caring. It is only when I stopped that intensity of care, that I realised how low I had sank. I think this happens to many of us but whilst we are in it, somehow we find the strength to carry on, often jeopardizing our own health.

Good homes are hard to find and when a bed became available for my husband I was told, almost 'ordered' to take it. I was told if I missed this opportunity I may be waiting another two years. I think it was Sylvia who advised you 'to grab it with both hands' I tend to agree with her.

I wish you and your wife well, whatever you decide, keep in touch.

love and understanding from Bastan xx

 

[BeckyJan]

I agree with many of the comments here and I do know how hard it is as my husband entered a NH 2-1/2 years ago.

Another angle is if you wife goes into care at this stage the carers will get to know her and understand her personality hopefully before she deteriorates any more. This has happened with my husband and I am grateful for that.

Whatever your decision my best wishes to you.

 

[stikwik]

my two-penneth

it seems we all seem to be saying the same thing, but i'd like to add my story.

my husband is 57 and was diagnosed 5yrs ago, and went into a home 6 weeks ago. such a hard decision but i also knew the time was right. however much grief i feel, which is variable, i always know deep down that it was the right decision. i always thought it would be down to me not coping that meant he had to go, which it was too, but in the end a major part of the decision was for his benefit in that he needed more input, that 1-2-1 can't give. he was pacing and couldn't relax and watch tv etc, so i found this unexpectedly disturbing, and he was like a caged animal. at his new home, he has a large expanse of floor and corridors to walk, and many staff to talk to him and share the load of his ever increasing needs. when i visit, we have special time together, that we never had at home more recently, due to stress.

it's not a straight path to walk of improvement, but it's a necessary one, and hopefully you may have already decided to take it up. staff got to know steve for a few days before he got even worse, possibly brought about by the move but i believe inevitable in some near future anyway, and i'm glad they did as they already loved him by the time he needed them more. (nb he's had his anti-psychotic stopped now, which i think was causing those changes, and he's improved in the last week - we couldn't've stopped it had he been at our home.)

i think he went there just in time. if he'd gone in too late, i think it would have been more distressing. i didn't tell him it was a permanent move, but so that nurses could monitor him whilst his drugs were amended. but now he seems largely used to it and doesn't ask about coming home.

 

[Grannie G]

Hello Nikola

I`m so pleased to read your story.

I know `pleased` is not the best choice of word but I hope you know what I mean.

It is so gratifying to hear how well Steve has settled and how much he benefits from his new environment.

You have had a very tough time and I hope you can now get some life back for yourself as well as be able to enjoy better times with Steve.

 

[stikwik]

thanks sylvia - i think i'm just starting to realise all that's been happening the last 5 years and the full extent is starting to hit me. i remained strong whilst i needed to be, but now, i can' believe how awful all this has been. i'm not a regular user of tp, as you know, but occasionally scan the threads to see if i can give or receive help. maybe speak again soon! xx

 

[rosaliesal]

When the time is right

There comes a time as things progress that you know in your heart that the time is right. Do the right thing now. It is the right thing for your future and that of your wife. Think it through, make a plan and go ahead with it. The rest will fall into place. You can still visit every day. You must take care of your own sanity. The happier you are the easier it will be to cope and the happier the meetings will be with your wife. It is not your fault nor hers. You are doing it for her safety and yours. It seems to be in the best interests of both of you. You know in your heart you are right.

 

[tish]

My wife (57) is now at quite an advanced stage. Double incontinence, does not talk, no sense of her surroundings, not very mobile, will not drink or eat properly etc. However she is not generally aggressive or too difficult to manage from a behavioural perspective. The disease is progressing quite rapidly (5 years since the first real symptoms).

Originally I thought that I would be able to look after my wife at home but, as the realities hit, and with no family close by, I realised that long term care was inevitable at some point. I could battle on at home until the end but I think I would be doing this for myself rather than obtaining the best possible care for my wife.

It seems like the disease is always moving faster than I expect so I decided to look at care homes in advance. Most were dreadful but then I found a small home that seems ideal. The problem is that, being small, places come up very infrequently. However, they have just added two new rooms and I have to take a decision as to whether to try and get one of these rooms. I would have liked to consider this step in six months time or so but I am worried about missing this opportunity.

It is the most difficult decision that I have ever had to take. I really do not know how I will cope with the trauma of moving my lovely wife out of our home but I think that I must do it. I dread the thought of life after this. How does one adjust after so long together?

Stewart

I have to say your a lovely man and your wife is so lucky to have you. My niece is 36 with early onset and her husband doesn't care for her at all, to put it in a nutshell he cant wait for her to die, so to read your thread was lovely. I think my niece will be coming to live with me soon and im wondering how i will cope with it all. Her mom died aged 36 with the condition and i remember how awful it was. Something i never imagined to see again, little did i know it was hereditary! I wish you the best of luck. Tish xx

 

[Stewart]

Thanks for all of your kind and insightful responses. They have helped me to put things in perspective. I will try to take the opportunity to get a room for my wife in this small, well run home. I anticipate that the transition will be awful for me but I’m sure that it’s the best option for my wife (and therefore for me in the longer term).

Stewart

 

[BeckyJan]

it’s the best option for my wife (and therefore for me in the longer term).

Very wise and I am sure it will work well. Its hard in the first few weeks but keep coming back here for support when you need it most.

Best wishes

 

[chucky]

Hello stewart, it is indeed the hardest thing you'll ever have to do, i suffered terrible guilt putting my dad in care and its taken me almost 3 years to come to terms with it. However, i knew i was doing what was best for him as i couldnt cope with him any longer at home, his behaviour and aggression wore me down to the point of a breakdown. At best the guilt was crippling at worse it was traumatic, there was many a night i couldnt sleep and wanted to go to the home and bring him back. No one wants to put their loved one in care and we put it off for as long as possible, enduring the sleepless nights, demanding behaviour, incontinence, the 24/7 grind in the hope things will get better but they dont and the reality is that sadly it gets worse. Now that youve come to a decision you will need the strentgh of goliath to see it through, and yes there will be days when you think youve made the wrong choice, (we've all been there)! We're all different in the way we care but the one thing we all have in common is courage and its that which carries us through the bad times. Stay strong, keep talking. When the time comes and youre feeling fragile, remember here at TP you can offload when the going gets tough and cry, laugh, rant and rave with the rest of us. take care x