Dilemma

[merlin]

Hi all after a long gap

I wonder if anyone can help me make a decision. Last time I was on the forum I thought I had cracked it as far as coping with my wife’s AD. A combination of daycentre visits and the as required visit of a carer and I had got a life back after some 2/3 years of caring.

Things were going so well I had the idea to take a weeks respite leaving my wife in the care home attached to the day centre. Then it all went pear shaped and 3 days into my holiday, I receive a phone call from the home that she had been taken to hospital with a suspected stroke. To cut a long story short it turned out to not be a stroke and they could find nothing wrong. By the time I managed to get her out of hospital and with the help of the social services team at the hospital, I reluctantly agreed to get her into a home with nursing care because she was no longer mobile, had lost weight and had pressure sores. All that is now behind us and she is back on her feet albeit with assistance. That being said she cannot express herself, needs feeding and being in a home is incontinent by default ie is padded up as the easiest solution. In other respects the home and its staff is excellent and I have no complaints.

The dilemma I now have is that with her now being mobile should I bring her home as the kit I have at home will cope with her current condition (with home carers help as required) or leave her and do what I do now which is to visit her about 4 hours a day (like now) and usually give her her supper? The big problem I have is that every time I leave her I feel I am deserting her and feel dreadful with a sense of guilt. I sense also that she knows I am going and looks very down and that makes it worse.

The perceived wisdom from friends, family and social services (who I have to say have been very good) is to leave her in the home and to look after myself. Sensible advice I suppose but it ignores the fact that it is the first time we have been separated for 42 years and it is an incredibly lonely feeling. On the practical side she has deteriorated slightly after all the recent problems and will undoubtedly get worse.

Any views from forum members who have been in a similar position would be helpful.

 

[merlin]

Dear Nada

Thanks for your response and helpfull advice. My real problem is that it is only too easy to rationalise a decision on practical grounds and I suppose that is how most people make a decision.

In the end, as you say, it is a question of overcoming the "guilt monster", human nature being what it is, most practical problems can be overcome with effort and determination.

Thanks again

Merlin

 

[Brucie]

Hello merlin,

it is a difficult one to call, and it is not going to help for anyone to say - only you can judge!

Since you have time [too much I'm sure you will believe] to think, while not being involved directly with your caring role, I'd be suggesting to make up a balance sheet.

On the one side place the level of care your wife receives at present.

Try also to place - as objectively as you are able - the positives for you at present - less tired perhaps? Better able to show a bright face when you visit? Put the negatives there too - loneliness, guilt feelings.

On the other side, look at what would be the level of care you could provide if you brought her home. From your wife's angle and current condition how would it compare?

Also look at the positives for you of having her home again - and the negatives.

Try to consider how her condition has deteriorated, and what her needs may be with continued deterioration. How would that be handled at home?

Of course, the type of care would be different - you've been with her for so long, and paid carers can never match the love part of caring.

All hugely difficult things to evaluate, but worth trying nonetheless.

You may end up seeing relatively more positives on the part of leaving her where she is at present - yet still bring her home because you can't compute the value of love.

I'm afraid that none of the above may help, but that's the way I would approach it. Unless you put up your own Aunt Sallys - you can't knock them down again!

Good luck - there is no harder decision to make.

 

[merlin]

Hi Brucie

Thanks for the pointers to help make a decision. Whatever decision I do make it is not going to be a hurried one, if for no other reason than you have to pay one month in advance!

The big imponderable is of course as you say, putting a value on love. She is/will be getting worse and at home I wouldn't have the facilities to cope in an emergency and God save us from another session in hospital, that would finish her.

I had thought I could bring her home and if it didn't work out at least I could say to myself I had tried. That option I think is a non starter as it would be more unsettling for her and rather selfish on my part to simply try and salve my conscience.

If I could detect a feeling that she is getting less upset when I leave in the evening then I would leave her in the home. As I am there for 4 hours a day I am getting to know the staff better and getting some feedback, which by and large is positive on the side that she is more content.

Other things I have had to consider is that none of my siblings are within easy reach and whether or not the house could be easily adapted when she became completely immobile.

No I think the jury is still out on this one, but then again problems/decisions have a habit of solving themselves on occasions

Thank you very much for your guidance on this one.

Regards

Merlin

 

[jenniferpa]

Merlin, I don't know whether it would be possible, but could you perhaps shift your visiting hours slightly later so that you are there when she is put to bed? That might help her (and you) get over the leaving issue.

Just a thought.

Best wishes

 

[merlin]

Jennifer

Bit of lateral thinking there changing visiting times, yes definitely worth thinking about.

Thanks

Merlin

 

[connie]

Dear Merlin, this is one decision you are going to have to make on your own.

Bruce has given you very good, sound advice in drawing up a balance sheet.

For my part, when I first placed Lionel in care, for both of us the home was wrong.
So after two weeks only we were back home together. Lots more care was needed, and once that was in place I carried on for a further 9 months.

Circunstances then dictated that Lionel needed to be where 24 hour care was 'on tap' so now I visit him in his new home. No it's not the same, I miss him so much, but realised that he needed much more assistance to survive than I could give on my own.

I have many, many regrets for the way life has turned out, but I know I made the right decision at the right time.

Whatever you decide, your decision will be right for you, and we will support you all the way. God bless,

 

[merlin]

Hi Connie

Thanks for your response. Looks like the circumstances were similar for you and what have said has been very helpfull. I did carry out the balance sheet that Bruce suggested and for all practical reasons it weighed in favour of leaving my wife in the home. As he rightly pointed out the final balance depends on the the weighting you give for the love factor.

She is just beginning her third month so in one way it is early days yet bearing in mind it took a month to physically recover from the hospital stay (that required nursing care which I couldn't have handled).

After discussing my problem on thr forum I now feel more able to make a rational decision for which I thank you all.

Hopefully as I am back on the web I might be able to contribute some help for others.

Regards

Merlin