Is it time for a care home for my wife who is only 65?

[Thursdayschild]

I think this is a common dilemma but some advice would be good. My wife has young onset Alzheimer's and is now just 65. We went to see her consultant very recently and my OH's MMSE score was 4! I was really shocked, but then realised my wife has been deteriorating under my nose and I just have sort of adapted. I now bathe her every day and she is incontinent (but not all the time). My OH's mobility is pretty good.

My daughter now thinks her mum does not know who she is but, sees her as friendly person she knows and enjoys her company.

The consultant said don't leave it too long before doing residential, even respite. She said my wife is gregarious and loves activities, and if I let the MMSE go too far my poor old OH will be unable to manage in a fun care home and might even need a nursing home alongside some very ill people. I try to arrange some activities every day and I have managed to get a once a week place at a day centre, but there are still times when my wife is just so bored.

I feel pretty bad even considering residential and she would be with people a lot older than herself. On the other hand I have been a carer for five years and am getting very tired. I am younger than my wife and wonder if I might start again somehow if my wife was looked after. I fear she will forget me soon. So I am struggling with guilt and feeling so selfish when I think what I might do if my OH was not at home, like go back to work or maybe evening classes or a book club etc.

Any advice?

 

[Amy in the US]

Hello, Thursdayschild.

The "when is it time for a care home" question is always a difficult one. Something I hear a lot is that "when you've seen one person with dementia, you've seen one person with dementia." Meaning, of course, that everyone's disease process is different, and everyone is an individual, and every family situation is different, so there's never one right answer or approach that works for everyone all the time.

Whether or not now is the time for a care home, I would venture to say that you and your wife could do with more support, as you sound tired and stressed and distressed.

Hoping to go to a book club once a week or so is not a selfish or unreasonable thing to wish for! If you are currently the only hands on carer more or less 24/7 (as it sounds you may be), that is a very difficult, tiring, and draining job to have.

A day centre once a week is a good place to start and perhaps it gives you a bit of a break?

I wonder if you would consider some sort of respite care for your wife, so that you could have some time to yourself and be able to have a think about plans for the future? It's hard to think clearly about anything, when you are in the thick of the caring.

Also remember that you can certainly investigate care home options in your area, and even place your wife on a waiting list, without committing to anything. When it's not an urgent/emergency situation you can take your time and go at your own pace. Knowing more about what is available might give you some helpful information, whether it's for now or later on.

I also wonder if there might be some support for you, that could be helpful. Perhaps a local support group, carers cafe, a counselor or someone to talk to, something of that nature? I rely heavily both on TP and a support group near where I live; both help in different ways. Sometimes it's really helpful to be in a room with other people who understand your situation.

As you are the main carer for your wife, are you getting support at home? Carers coming in, council tax reduction, attendance allowance, carers allowance, that sort of thing? Could you hire someone to help around the house, with cleaning, laundry, gardening, and so forth? Online shopping to reduce errands? Et cetera?

I am sure you understandably may feel guilty for considering a residential placement, but guilt is unhelpful when caring for a PWD (person with dementia). Here on Talking Point we often call those feelings "the guilt monster" and offer a special, cyber-issue pointy stick, for poking the guilt monster with, when it gets overwhelming. Please feel free to take a turn.

Try to remember that none of this is your fault, but is rather the fault of the disease. Dementia is the enemy, not you!

Being a carer is hard, and the fact that the disease is progressive makes it harder, as things only get worse. Dealing with incontinence at home is not an easy task; personal care for a PWD can be very challenging, never mind the cleaning and laundry and so forth.

You're not a terrible person for considering the consultant's advice, and looking at options. (However, knowing you're being practical doesn't always make you feel any better.)

Hope you can find a way forward, and best wishes.

 

[Philbo]

Hi Thursdayschild

Sounds like I am in a very similar position as you - apart from age, as my wife and I are both 66. We have two sons - so I don't ask them to "babysit" their mum for long, as I can't expect them to help with her toileting.

She is mobile, seems happy and is always laughing at anything and everything! Like you though, I have to cope with incontinence, as well as doing virtually everything for her. It's not that she can't, but has forgotten how to do everyday things, so if I weren't around, she'd not wash, dress, feed herself, go out, switch the TV on etc etc. So she is totally reliant on me, otherwise she would need residential care.

I don't begrudge a moment of this and I dread the thought of her having to go into care but I have started looking into day care, respite care and residential care options. In fact I've been to look at a couple of care homes and though both seemed very good, she would be the youngest there by about 20 years!

I do get now a respite visitor, 3 hours a week, which is going okay and I think that the next stage will be sorting out some half day or whole day sessions for her to attend. I could really (if I'm honest) do with a weeks respite but like you, I feel guilty and also worried about what she will be like coming home after this? I know others on here say it can be beneficial for both parties, but I am very wary.

I hope you get on okay and I am sure we will share notes via this forum.

Phil

 

[Fullticket]

This may have been covered but I am 'skim' reading as I need to get the dinner on!
Can you get her into day care in a 'fun' home? Mum goes three times a week and I often go to pick her up and they are all having a good giggle, chatting, doing quizzes, etc.
I think it's much better for her than being here with me, watching TV and dozing. As a result, if I need her to go into respite, she knows them and they know her. When the time comes I would hope to be able to get her into this home, i.e. before she needs full nursing care and can still have some quality life.
No idea how going to finance it yet but that's probably another post for another day.