Are we doing the right thing?

[AMCR]

My mother - aged 87, has lived a fulfilling and independent life until this year when her "forgetfulness" developed into a severe short term memory loss / early Alzheimer's onset as diagnosed by the Memory Clinic. She has been prescribed Aricept. Additionally, she has been living with breast cancer for 5 years, the disease's progress being kept in check with medication. However, a severe infection and 2-week hospital stay made her dementia worse. She returned home and was provided with carer visits 3 times/day to supervise eating and taking medication. She increasingly became more confused and depressed, feeling socially isolated. The carers were not there to provide social contact. She was anxious about being on her own at night and frequently telephoned me or my sister in a state of confusion / distress. We tried to see her daily, and always at weekends.

A second bout of infection and another hospital stay has set her back further. On recovery, discussions with social workers indicated her need for full time care, and we decided to place her into residential care.

The home is very nice and close to where I and my sister live. Her dementia is characterised by short term memory loss only, and she is fully aware of her situation. However she resents being in care, and is very depressed and angry with my sister and I, and she refuses to acknowledge her care needs. As a family we've discussed all options with her many times (she can not recall these discussions), yet she refuses to settle into her new surroundings. Things are made worse by some of the other residents needing much more care than my mother, and her seeing this adds to her anxiety. The Doctor has put her on Valium to calm her down.

My sister and I feel very guilty about the course of action we've taken. She won't live with me (my wife and I work full time travelling abroad frequently, and my daughters are in full-time education), and my sister is reluctant to quit her career to look after our mother full-time.

Our original first choice of care home won't take her because they don't have facilities for caring for residents showing early onset of Alzheimer's, and where she is now is the best option we've found.

How can we be sure we're doing the right thing? We both feel very saddened and guilty at putting my mother into a care home. Is there an alternative? What should be asking from the home? How can we deal with her depression?

 

[Perdita]

Hello AMCR,

My brother and I are in the process of trying to decide the same thing, our mum sounds very much like yours, except I think maybe ours is a bit further on. You won't be able to stop feeling the guilt, and it's an awful situation to be in and invades every aspect of your life, but you are making her safe, and doing the best you can for her which is something you should feel proud of and try and hold on to.

As for your mum's depression, is she on any medication for it? Our mother is on Citalopram although her memory clinic dr wanted to change it to something else, but didn't as the alternative might cause grogginess, and as Mum is still in a house with stairs we were worried about the safety isssue.

 

[AMCR]

Thanks for your reply Perdita.. Do you know of / have your tried any support groups for folks in our situation? Is this forum the best resource? Other peoples' stories are helpful reassurance.

Best of luck with your Mum.

A

 

[Perdita]

I have a phone call once a week from a lovely lady who volunteers for Suffolk Family Carers- you may find there's a similar group in your area- I find it very helpful to chat to her- she's an ear to offload to

This forum is great too - a mine of information and advice- for eg I had lots of help last week about my mum's medication.

 

[LucyLongSocks]

As a family we've discussed all options with her many times (she can not recall these discussions), yet she refuses to settle into her new surroundings. ...

How can we be sure we're doing the right thing? We both feel very saddened and guilty at putting my mother into a care home. Is there an alternative? What should be asking from the home? How can we deal with her depression?

You know if you could find something really better, you'd do it. You've just run out of really good options. You can't give people back their health.

At some stage, you have to trust yourself. Remind yourself that feeling guilty won't do any good for her or anyone, but that X, Y, or Z will. If you like, get creative about little things to cheer her up. You could start making her a gift, or ask an old friend to send postcards to her, or plan a day out. Or make plans to let the staff know that it's appreciated when they're a bit extra kind to her.

If she refuses to settle, there's something she doesn't like. Maybe she's lonely: maybe she needs a bit of a helping role to break the ice. Maybe some of the other residents scare her. Maybe she's bored. Ask the staff what seems to bother her most, and to help you get creative about solving it.

Has a doctor been consulted about her depression? If she's not getting enough exercise, or she's bored, those will make it worse. Touch helps, too: you could try aromatherapy or a manicure or something like that. Could she have some time with a pet, or children?

It sucks to have to do what you've done. BUT waiting too long would have sucked worse. You did do right, and you probably know it really. You're probably still hoping there's a better right and that if you feel guilty long enough, you'll find it. If only that worked.

Look after yourself and your sister, too. Give yourselves some comforts. You've done something really hard, and you're still doing it. You need looking after too.

 

[beena]

Hello AMCR

This is such a difficult situation, isn't it? I'm in the same place as you. The guilt seems never ending and unsurmountable.
I have no great answers.
Just to say that all you can do on a daily basis is to remember how things were at home for Mum and, remembering that, think how much at risk she would be if she were still there. Like you, my Mum has no appreciation of the limitation of her capabilities. It doesn't make anything any easier dealing with the day to day questioning of 'when am I going home'. Is it the best (and yet hardest) thing we, as adult children, have to do?
I think so ...

 

[AMCR]

Thanks for all responses to my original post. My mother has been prescribed antidepressants - hopefully this will have a beneficial effect. Feedback from the home is that she is showing signs of settling in, but on visiting her this afternoon, she was very distressed, accusing us of abandoning her, deciding her future without consulting her, acting in a way that our late father would abhor. In a short time our loving mother has undergone a complete character change. This same conversation takes place whenever we see her.

Of course her lifestyle change is huge and proximity to other elderly folks in varied stages of physical and mental deterioration is traumatic.

How long can we expect it to take for her to settle? Would trying other options such as full time home carers or placing her in another home make things worse? Can we expect her ever to understand we're doing the very best for her?

 

[Katrine]

Dear AMCR, I am reading your thread with great interest and also trepidation for our future when, probably in the next year, we will be making the same decision as you did. It was your comment about "proximity to other elderly folks" that struck a chord with me. I think this is going to be the most difficult aspect when MIL goes into care.

When we go out for the day or for a meal, she ALWAYS comments about how many OLD people there are around. We have come to the conclusion that she only wants to see young people and children, as if old people should be kept out of sight, they are spoiling her day, reminding her of old age etc. She, of course is not old Although she knows she is 80, in her mind she is starting to live in the past, about 40 years ago, and frequently thinks her home of that time is her real home.

So, yes, it has occurred to me, when we recently visited a CH for the first time with her to have lunch, that this aspect will completely freak her out. She doesn't mind infirmity as she was a nurse, it's just the OLD bit that she hates. She's going on a day visit to the CH soon, so we shall see what she says.

I think you have done the right thing. Please keep posting. The alternative to the CH would be to have had live-in carers, and only you know whether your mother would have liked that better than what she has now. It suits my mum, who wants a very quiet calm environment and is not sociable, but someone who wants company and stimulation might find one person living in not to their liking either.