wondering

[Margarita]

My mum is in a care home, while I look after my brother till he gets housing support as I could not look after both of them.

The nurse in the care home ask how long mum was staying as she only book in for 28 days ,that put me in a panic as its been 2 weeks already .so I was stressing & phoning up brother CPN .

Anyway when I went to see the manger of the care home ,she told me the nurse should not of told me that & can stay as long as it take , in a conversation I was having with her ,she told me that I should look to the future , meaning mum staying in the home for good .I said ,but mum wants to come home she replied they all say that .

What it is if I am truthful to myself & not to scared to say it to you all , I don’t want to look after mum any more & I feel so bad about that , I can not bring myself to ring mum social working .scared to admit it to mum scare of those emotion of letting go .then I change my mind & want mum back .

I can not cope mentally if mum came home, I know mum can’t help it ,but it’s the paranoia, clinging, not being able to share moments with my teenager, without mum wanting me to be with her, following me all around if I am gone for 2 min, calling my name now she in the home in a room of her own she does not mind ,but with me if I am not in the same room when at home she will not settle.

Why is that anyway? as in staying in room alone in care home & not when at home with me ?

 

[rummy]

Hi Margarita,
My Mom still lives at home with my step Dad and will still say she wants to go "home". I'm not sure where that "home" is, her childhood, her young adulthood or maybe even heaven. But for sure she isn't feeling at home,,,,,,,at home.
My point is, your Mom may not ever feel settled, anywhere again. You have to make this right for you and if you are a happier, less stressed person, you will have much nicer and memorable visits with your Mom. I think they can pick up on our stress no matter what stage they are in.
Try not to be so hard on yourself. You own family is important and you are only one person. Guilt is something we all experience but realizing that there is just so much you can do for your loved one and that most of AD is totally out of your control might help. As my dear husband says, all we can do now is make sure they ( my folks) are safe and as happy as their circumstances will allow.
Take care,

Debbie

 

[Margarita]

Debbie

Debbie

Yes that does help but realizing that there is just so much you can do for your loved one and that most of AD is totally out of your control might help. You hit the nail on the head.

As that is how I feel when mum is around at home with me so out of control, I am not a controlling person & no that I can not control her AD, or maybe I did in the past, but I can’t its going to drive me to a mental breakdown if I do not admit to defeat that AD has taken over my mother brain

I have just received a book about AD ,it said what I was feeling :-family members often cling to the good days or hours as signs that the diagnosis is wrong, could not believe it when I read that ,as that what I was contemplating going to the doctors for another brain scan ,that they had got it wrong.

Going to wash up & take my mind of it for a while ,if I can ((HUGS)))

 

[Amy]

Hiya Margarita,
I have great respect for you that you have managed to make this posting this afternoon, it must have been difficult. As you know my mum went into a home shortly after Christmas. I know that I could have given up work and helped care for her, but I chose not to. You have a teenager who needs you, you have your own needs too; you have your brother that you are caring for; you have your own health to consider. You have your mum's health to consider. You have already said that she appears less anxious in the Nursing Home. I think that the routines, and maybe in some ways the lack of activity; thelack of tension, all this is beneficial to a person with dementia.
No, do not admit defeat to the dementia, we defeat it by continuing to love our relatives 'just as they are'. We just have to find new ways of showing and sharing that love.
So, well done. You are being realistic. You are looking at what is best for your whole family, mum included. I'm not going to say don't feel guilty, because it creeps up on us when we are not aware, but do not let it overwhelm you. There are lots of days and times for you to enjoy with your mum still, she's just moving home.
Best wishes
Amy

 

[daughter]

Hi Margarita,

I go along with all that Amy and Debbie have said. Having just emerged from a bout of "realizing that there is just so much you can do for your loved one and that most of AD is totally out of your control" myself, I can understand how you must be feeling. Here are some {{{hugs}}} for you too.

Best wishes,

 

[connie]

Margarita, you are so brave in posting just how you feel. Do what is right for you, that way you will be better able to support your mum. Sending a big hug, Connie

 

[Lynne]

Margarita

You have just faced up to a HUGE milestone in the AD journey you have tried to travel with your mother. It's so very sad, but there comes a point where caring loved ones have to realise - as you have now - that you cannot go with her all the way to the end. You have to look after your own health (mental & physical) and hand over some of the day-to-day care to other people. Of course this doesn't mean you are going to abandon her, but if it is true that she settles in her own room at the care home, you must ration your time for your own sake as well as hers. You are right & wise to realise this, but at the same time it is so painful to think about.

My thoughts are with you Margarita, for your sadness and pain. God bless

 

[Margarita]

To all

I told mum tonight, I just had to I could not keep it in, but keep my emotion in control when she said, but I just want to be around you & the children, all you have to do is give me breakfast , she said don’t talk to me like this as It hurt my leg ,& it hurt my chest meaning that she will get depressed, I did not re act in anyway ,mum put her glasses on upside down it was like I was seeing her illness for the first time ,open the book Harry potter in Spanish, read a littlie from the middle of the book ,then say she tried can’t read , she went quite for a while then said ok as long as I you take me out sometimes & to see dad ( his grave) & at that point felt like saying no your coming home, but did not .

Thank you oh so much for your support, each & every one of you above makes me feel I have done the right thing, God only knows I could not of done it without meeting you all on TP. next step see what the social worker will say

 

[Amy]

Hiya Margarita,
It has been a tough day for you. Try and get a good nights sleep. You have many people's thoughts and prayers with you tonight.
Amy

 

[rummy]

you did really really good Margarita.
Tonight your Mom is safe, warm and being taken care of. This is all a good thing and your did your job well.

Debbie

 

[Brucie]

Margarita

There's nothing more difficult, well done.

mum put her glasses on upside down

It is these seemingly little things that wrench the heart most of all.

The picture below show Jan at home in 2001, some months before she was to leave for good. She took to wearing one glove, and she was leaning at this stage as well. But it was still Jan, and she knew me, and she smiled for me. Breaks me up each time I see it.

 

[rummy]

Bruce, That is a lovely picture of Jan , how nice to have it to remember happier times !

Debbie

 

[Margarita]

Now that is a good photo of Jan, puts a smile on my face, one glove have not still got hold of the social worker. Is Jan still walking now Bruce?

The next day after my last post ,mum rang me up at 5 o’clock all worried , I was on my way to the home when she rang ,when I got there she was saying I am not staying hear there all mad in hear , so did not argue with her & just change the subject , the next night my daughter went with me & mum keep saying to her ,you’re look after me won’t you ? As we tack her in to bed.

My head is killing me , & do not feel like doing anything & was wondering can looking at the lap top give me a head ach ? (Can't even spell now ) It does seem to make my head hurt more looking at this screen could be stress also ?

 

[zan]

Margarita, I am sure that you are doing the right thing. My Dad came out of hospital for 4 weeks. He went back in because he had a fit and his pulse was racing out of control. When he was in hospital I decided that it would be best for him and for us if he does not come back to live with me. It is heart wrenching to decide this. You have to realise that someone you love needs care 24 hours a day and one person cannot do 24 hours a day and stay physically or mentally well. Another deciding factor was I made myself look at how my Dad would see the situation if his mind was well. He would not want me to be doing the personal jobs for him that we have to do and he wouldn't want my children to see those things. In hospital someone else does those jobs and I can hold his hand and give him a drink. I can have what you might call the quality time with him. I have found my guilt trip feels harder for me because my Dad has only a month or two at best to live and I think can't I even cope for that amount of time, but , being realistic I can't. I can't change his pain killer prescription when he needs it or be awake throughout the night as well as the day. We never stop caring and loving , we just do it in a different way. Margharita, your Mum didn't bring you up so that you would have all this stress I am sure. Like my Dad, she will have wanted you to
have a good life, just as we do for our own children.Don't tear yourself to pieces, you have done so well and caeed so much and still do. I think that last sentence is both for you and myself and probably for all of us who are at this stage. Love Zan

 

[Brucie]

Margarita

Is Jan still walking now Bruce?

Sadly, Jan has not walked since 2001. Instead she has been able to crawl in a specially protective room.

The past six months, she has slowly been losing the ability to crawl. This was replaced by her being flat on her back for part of the time during my visits, and sometimes being able to raise herself onto her hands and knees.

The past few weeks she has been losing that ability, and can now only be on her hands and knees for short periods with my help.

Besides that, she can't see [dementia has robbed her of her sight as well], and has started to have problems swallowing. Does she know me? How can I know as her speech has gone? I like to think she does know me.

I'm hugely in awe of her stunning bravery. Boy is this girl special!

Picture below, last month.

 

[Margarita]

Well I must say that I was surprised in how younger you look in the photo with Jan, then in the photo of on TP, I had to have a second look to make sure it was you

Gosh sorry to hear that Jan can not see you, I never knew that AD could do that to a person, I am sure from the feel from your touch of your hands that Jan knows its you, your smile shows me what courage you & Jan have for each other .

Thanks for sharing.

Ps at care home with mum tonight, in the front room as we all set together & watch TV tonight .I got out the Extremely chocolate caramel toffees, I was debating should I or should I not other them a toffee each, well I did at the end & all of them took one, I had a vision of them getting stake in there teeth & nurse telling me of, but all went well.

Is that your granson I can see Leaning on you, yes I am noise