Feeling less than generous and calm!

[Glenisla4]

Have just moved Mum, in the last few days, into her care home. Early days but I cant fault the care staff, they have been lovely and welcoming, everyone one of them that we have met so far. Mum has an awareness of what is happening, sometimes and seems to have accepted the move. That is and hopefully, will continue to be, the sort of person she is. She is always delighted to see me and her old friends.

I am feeling guilty and emotional , after years of struggle, that she is no longer at home and find myself questioning if I have done enough. I know that I have , four visits a day from carers who said even that wasnt adequate any more, and twice weekly visits from me which needed an overnight stay each time. I cannot let myself get wound up as we now have to face the job of clearing the house and making decisions about that.

 

[at wits end]

Hi GlenIsla, i sympathise with your situation having moved gran into a CH in December.

After beating myself up about what other people may think I came to a decision that if any one questioned my decisions they were free to take over her care themselves. SO perhaps you could just say to your brother that is he feels she could cope with him taking over your role he is free to take her home but that you could do no more.

Of course he wont want the responsbility and will suddenly become happy with your choice!

No point falling out over it i agree but let him know you have reached your limits.

 

[Glenisla4]

Its a strange process I suppose. You do all you can ,(at the expense of your own home life but thats another story) and then find your self worrying about what other people are thinking. It shouldn't matter but one little comment can leave me totally devastated for days, you would think I would have more strength but the whole situation has left me really fragile and ridiculously emotional, I am hoping, when I am not so tired, that I can see things more clearly again.

 

[jaymor]

The nursing home my husband is in took photographs of the residents during Christmas and gave me a copy. A couple of friends, I use this word loosely, said how well he looked, just like his old self. He is his old self he is the self he has always been but he has dementia, it has taken his mind, his dignity, his ability to understand, stopped him knowing me, his children and grandchildren and everything else of him that allows him to lead a normal life. The one thing it has not taken is how he looks. So why are they so surprised that he looks just like his old self. They are surprised because when dementia entered our lives, they disappeared, we had the odd telephone call but no other contact. Now he is in care I can see that they too look like their old selves too, the old selves that evaporated 7 years ago and have suddenly popped up again.

Jay

 

[garnuft]

Oh, I know the feeling Glenisla...I know the feeling.
Given that you want to remain friends with your brother, I won't say my first suggestion.

I have found the best defence to self-doubt is to trust yourself,
to not look back at decisions with hindsight.
To have confidence that everything you did, said or felt was in reaction to events as they occurred.

People outside the loop have a luxury we all wish to have but unfortunately, not all of us are able to plumb into this elusive stream of human ignorance,
'Clever-sh*te Know-it-all-ness'.

What they don't know is how it actually feels to live, be, do life.
Their loss.
He is lucky, if he was my brother he would be licking his wounds as he retreated.

Have faith in your choices,
they were the best you had to hand when it mattered,

Gwen

 

[dotty12]

Glenisla - don't feel guilty or beat your self up - I have had similar responses from siblings and I have come to realise that thye just do not have the same idea as I do about her condition. How can they? There visits are few and far between! You however know all the idiosyncracies, and with the recent move, are probably exhausted. Your mum has been lucky to have a daughter like you - so, hard as it may be, try to take your siblings comments with a pinch of salt' x

 

[Glenisla4]

Oh, thank you, thank you, such sympathetic understanding. I have such mistrust of all the decisions that I have made , was the support enough, is she now in the right place, will she be content there and you are right, Dotty, I am exhausted and probably reacting more emotionally than I normally would.
Someone said to me that you have to elevate your level of generosity and graciousness when you are caring for someone with Dementia, I think I will apply this to dealing with my brother!

 

[jasmineflower]

Hi Glenisla
If caring was easy then TP wouldn't be needed. You are not wrong, you haven't taken this step lightly. You had reached the 'tipping point' and could no longer cope or keep your mum safe . It shows just how little awareness that your brother and SIL had of your mum's disease that the "public face" convinced them that she was ok.

Don't forget that "a managed need is still a need". Your mum is looking well because her needs are being met 24 hours a day by a team of people. Not you plus carers working at breaking point.

Have faith in yourself and enjoy being a daughter again instead of a carer. Hugs xx

 

[copsham]

Hi Glenisla4,
Your situation is so parallel to mine! I did 110% for my mum when her dementia came on rapidly. After 3 months in hospital and serious attempts at keeping her at home she is now in a nursing home. My brothers haven't got a clue. Like yours they say she is not as bad as I have said. They haven't seen her get lost going from her dining room to her living room, they are oblivious of her double incontinence. She has lots of helpful little phrases which cover her loss of memory eg How is the family? Whats the weather like outside? What have you been doing?

Since being in a nursing home my mother has thrived. She still thinks she is in a hotel and is quite content with this. Long may it last. I just have to tolerate my brothers lack of understanding of the enormity of the situation. This is hard!! But we all get through it and I love Talking Point as I am always amazed that others are having either very similar or very different experiences. X

 

[stressed51]

Hi Glenisla4 - I know these feelings so well, don't you worry we all on here know what a tough, cruel disease this is. Appearances can be deceptive and let them think whatever they like, you did your very best. I know because I've had the same with my OH and guilt comes as part and parcel of it. If you're to have any semblance of a life then it's the only option, you'd go under otherwise. Jaymor I know these fairweather friends with their disappearing acts and their comments also, and what I'd really like to say to them ( but never would) I couldn't write on here! My thoughts are with all living in this parallel universe that being part of Dementia becomes.. I always think now of 3 years ago when he was diagnosed, as the start of this strange new parallel life. Only if you've studied or in particular been part of it, can you ever understand the truly awful nature of this disease. x

 

[minniemouse01]

Hello Glenisla4, do not beat yourself up - your brother didn't do what you did, did he? you have looked after your mum, seen it all first hand, dealt with all the unpleasantness of this awful disease, liaised with carers, put your life on hold, and still you feel burdened by guilt. Why ? you have nothing to regret, and he has been an ostrich.

Rise above it, don't fret, and move on with your life. He should know he is priveleged you still want him in your life.

Take care,

M xx

 

[Glenisla4]

Interesting update. I have just spent a couple of days with my brothers, dropping in and out of the new care home. I think they have suddenly both had their eyes open to her situation. I have stopped myself from doing too much "I told you so" (its not grown up. is it?) but it is so nice that they are beginning to understand.
We had a pretty intense day talking about the next step regarding the family home and how best to make her assets last so that she is assured of a secure future, that one will, I am sure, be a potential minefield but I think we are all trying really hard to manage it alll without damaging disagreements.
I will be sooo pleased when this next stage is over and I can spend my time with Mum doing the nice things again. Part of the way there now, at least I am no longer having to do huge bags of washing every time I visit and that is blissful!

 

[at wits end]

I am so glad for you, it must have been an awful time lately.

Here's hoping you can sort the rest out without too many disagreements. I have been told to 'just get the house clearance people in'...i think not!

 

[FifiMo]

Hiya GlenIsla,

Glad to see that your brothers are finally more aware of your mum's situation and congratulations on being able to hold your tongue too. The fact that your mum has come through all the traumas over the past year and is now content in her new home is down to you. You stepped in and gave her all the support and you were close enough to recognise when her needs were better met in residential care rather than at home. The fact that she is now doing well is because of where she is and here care needs now being met. If your brothers had turned up when she was struggling at home they would have seen something different! If they make comments about her being alert etc, I would say "I'm glad she was having a good day. She is so much better now that she has 24 hour care."

Please don't doubt your decisions. Every step of the way you have done everything with your mum's best interests at heart and there is nothing more that your mum, or your brothers, could expect from you.

Good luck with the house clearing, that's another thing altogether. LOL

Fiona

 

[Witzend]

Presumably it's because they've been absent that they're not aware. I think it's hard (if not impossible) for anyone to understand the day to day realities of dementia if they haven't lived with it, particularly if someone can 'present' well for a short while. And perhaps even more so once they're in a care home, nice and clean and tidy and washed.

If you're sensing an implication that you could have done more (maybe that she shouldn't have gone into a care home?) would it help to make a list, much as you've done here, of all the things she was no longer capable of, plus the incontinence,
etc? And say to your brother, look, I think I know what you're thinking, but I'm afraid you don't appreciate quite how bad she'd got, so here it is in stark black and white.
You can say it nicely, i.e. not as if you're expecting an argument.

Sometimes I think it's the case that if you don't spell things out, people never will understand.

I do sympathise, since there were a lot of snide digs at me after FIl went into a care home, from his sister, who'd never had to look after him even for an hour. I found it terribly galling for her to imply that I was selfish, when she hadn't a clue what it was like to care for him 24/7.

Glad your mum seems to be settling, though - that's always the biggest worry.