How can I help my mum?

[Les]

Hello everyone.
As many of you know, my father went into permanent care in mid november, and finally settled into a second home after suffering abuse in the first 'care' home. Dad is actually doing ok now in the second place, all things considered - his AD is of course progressing - but he seems to respond well to many of the staff members, he eats well and doesn't seem to be upset to not be at his own home. I'm not sure he really realises he's not at home any more, which is a blessing in many ways. The care staff really do seem to care for him - they cannot believe that the other place restrained dad at all, let alone 24 hours a day. They call him a pussy cat, and say all the time how lovely and gentle he is, and what a pleasure he is to look after. He falls less now, and anyway he wears hip protectors for those times he does. We would rather he had the freedom to move if he wants to and are willing to risk him falling, rather than restraining him and taking away his freedom.
And as regards that other place - well the investigations are still going on but the care commission in Scotland have told us this is the worst case they have ever had to investigate - we should have the results by the end of this month hopefully. I think that all 14 complaints made by us are being upheld. And two people are still suspended.

Anyway this post is actually about my Mum. Mum is really depressed. I completely understand why. This is the first time she has been on her own. She is only 67 - and she really misses Dad. I think she also feels very guilty (this is a guess) about the abuse Dad suffered in the first care home. She has said she knows its not her fault, but she has also now said she won't ever go away anywhere and leave town because she can't bear to leave him. I think this is because Dad suffered abuse whilst she was down here in the south of England visiting me. She spends every afternoon in the care home. She is very involved in his care still - she takes home washing, does ironing, sorts out his clothes, brings in food etc. This is ok, she has looked after Dad so perfectly for over a decade and I understand her wanting him to continue to receive her care.

But she's started avoiding social situations because she says she can't bear to speak to anyone. And as I said she won't leave town. she won't even plan a weeks holiday in August with me because she says she can't leave Dad.

She said she can't cope with people asking her how she is, because she isn't good. The slight problem is that she has a tendency to be a little bristly and snappy when she is emotional. I think with her close friends she could be honest and just say, I'm not good. But I'm also aware (as a past sufferer of depression) how hard this is.

I talk to her every day. I'm planning trips north to see her and dad. And I encourage her to be very honest with me and tell me how sad she is. And I tell her it's ok. But I don't want me to be her only lifeline. I don't think it's that healthy. I'm also encouraging her to go to her GP and ask to see a counsellor. I did this years ago and it really helped, and she knows that.

I wanted to ask you all though, those of you who have been in both my situation and my Mum's situation - am I doing the right thing - if not what should I do. can I do more?

Thank you all
Love Lesleyx

 

[Skye]

Hi Lesley

I do understand how your mum feels. My husband went into care in October, and though I haven't had the bad experience you had with the first 'care' home, I also spend a lot of time with him. I go in twice a day to feed him, and would possibly spend longer if he wasn't asleep between meals. I also can't think of taking a holiday, I couldn't bear it without John.

So don't worry too much about that aspect, your mum will relax her need in her own time. You're right, the guilt feeling is difficult to shake, even though we know it's illogical, and they're receiving the best possible care.

But you're right, your mum does need to find some other interest, and it's not easy. It should preferably be with people she can talk to without it always being about AD.

I'll tell you what has helped me, it may give you some ideas. Firstly, I joined U3A (University of the Third Age), and that has helped hugely. It's not a university, it's groups of retired people who want to keep their brains active, and meet in each other's houses to discuss -- whatever! I go to a philosophy group, book group, gardens group, poetry group, and general discussion group. But there are also groups for walking, singing, painting, etc. Most groups meet once a month in the afternoon, so it's not a huge time commitment.

I've also got involved in various mental health committees. Yes, it's fairly close to home at times, but I feel I'm doing something useful in improving standards of care in our region.

I don't know if either of these would interest your mum, but perhaps you could make some enquiries for her next time you visit?

Well done for looking after your mum, and realising that she needs so much support.

Love,

 

[CraigC]

Hi Lesley,

Sounds similar to my experience although without the added stress of the case. When dad went into care mum found it very difficult to talk to anyone and she relied on me for support which was fine. Like you I felt it was unhealthy and tried to encourage her to get more help outside the family circle. We also had an issue with distance. Mum found it harder and harder to go out and never really had any counseling. I think this is one area that is incredibly neglected and the social services seemed to disappear once dad went into care.

You can only push so much Lesley (leading a horse to water and all that), but ultimately you need to leave your mother to come to terms with it best she can in her own way and own time.

I'm not saying you should not push and encourage her getting support from anywhere possible, but don't blame yourself if she does not take your advice. That was my mistake.

Distraction therapy is good at times like this and hopefully you have your own ideas on what interests your mother already has that she could persue (in her time).

Do you think you could convince mum to join the Talking Point forum or a local Alzheimers Society Group? Just at thought.

It is good that you care for you mum in this way, but please don't beat yourself up about not being able to get her out and about right now. Sounds like you've got quite enough to deal with!

Kindest Regards
Craig

 

[Les]

Thank you both. It is so useful to hear these perspectives - i definitely won't push mum to do anything she doesn't want -so of course if she doesn't want to come on holiday I will leave her be. And I'm conscious of not making her feel like there's something 'wrong' with what she's feeling, because it's all completely understandable. I myself am struggling with feelings about dad's illness and his going into a care home. I was there for a week over xmas and on christmas day I almost couldn't bear it -we spent the morning with Dad but he was so dopey and didn't know we were there, so we actually went home for the afternoon, and it was all I could do not to weep and wail as we walked out, but for mum's sake I kept it together.

You're right about Mum needing stimulation in parts of her life that have nothing to do with AD - she actually has two things she could be very involved in - one she has dropped out of really since dad went into care, as she says she can't cope with people asking her how she is. And the other she does still have some involvement in, but the other day I was chatting to her, trying to get her excited about the next event, and she said she might not do it. I don't want her to stop altogether. I know that when she forces herself to go, she comes back feeling so much better.

But this is all a process I guess, and I can't force the issue. I'm just so sad for her.
Lesley xx

 

[Grannie G]

Dear Lesley,

As Craig and Hazel have said, give your mother time.

First of all she needs to recover from the ordeal of 24/7 caring and secondly, although it hasn`t yet happened to me, I should imagine when my husband goes into a home it will be akin to a period or mourning.

When people ask how you are, unless they have personal experience of caring, and caring for someone with dementia, they are often unable to accept or understand the truth. Many people ask how you are as a formality, and don`t really want to know.

Your mother is unable to say, as most of us do, `I`m fine` and she doesn`t want to go into detail either, so it`s easier for her to isolate herself.

As for the outside interests she once had, she will return to them eventually, when she feels able.

Think how you feel about your father and treble it for your mother. I know you are worried about her, but if you continue to be as supportive as you are, the time will come when she will ask for your help, and then the time will be right.

Take care and look after yourself too.

Love xx

 

[Les]

Thank you for your insight Sylvia.
I will give mum all the time in the world, and will always be here for her, no matter how long it takes. Somehow I can cope with my own unhappiness, I just can't cope with the unhappiness of those dear to me.
Love to you all
Lesleyx

 

[Doreen99]

Hi Lesley

I know how easy it is to just withdraw and avoid contact with anybody when you feel you can' cope with them asking how you are. It's just a symptom of depression, so when it happens I tend to give it a bit of time to work itself out. I've aways found Forums a great help, as you can go online and nobody knows who you are (to start with, anyway) or what you're going through, so you don't have to worry about discussing something you'd rather not.

I don't know if you could get your mum interested in the internet, but it's a great way of having an "outside" interest, without having to go out.

You certainly want to encourage her to see her GP, in case she does need counselling and/or some short term anti-depressants, just until things are better.

Although you are right in not wanting to force her into doing anything, it can be very easy for people to get into the habit of not socialising at all, and then not want to change. It's a difficult balance to find, and depends so much on the individual involved.