Feeling totally lost

[Auckland]

So my husband and I made the decision to come from. Our home, the other side of the world, to spend some time with my mum
Mum. Is 92 diagnosed with vascular dementia, a few years ago now,
During those years my dad was still alive, he has since passed at the age of 94with alhziermers,
Back then mum. And dad were living together in an assisted living environment, with warden, and facilities, we at that time made the decision to return to the UK, because of the increasing problems my mum was having caring for dad, phone calls early hours of the morning, can you come, 27hr flight away,
So we rented out our home,
Stayed cared, and nursed dad at home untill he passed
We on the other hand had spent 7years here and just wanted to go home,
I am an only living child, my only sibling passes 25years ago
I have lived overseas for over 40years
Mum. Was depressed and alone a lot,
We couldn't just be there constantly,
We fought tooth and nail to get mum. Into care, on the grounds there is no other family for her, I am it,
We told them we were going home, and we did
So Thats the brief intro to now 3 years down the track
I am riddled with guilt that I put mum. In care
This is the third time in 3years we've been back
The situation now is
Mum is relentless in her complaining,
It just never stops
We have given up our life so to speak
And all I here is
Begging me to take her home,
If you cared about me you'd take me home, you don't care, you don't love me, stop trying to fob me off,
I hate it here,
If we take her out she begs not to go back, she sits whimpering when we are there,
She never smiles,
Tells me, she walks up and down the corridor every night looking for me,
I'm assured she doesn't
I'm told she's all right when we're not there,
I wish I could walk,,
She can walk around the care home, just not out in the street,
She asks us to take her to see dad at the cemetery, which we do occasionally, but it's a massive effort taking her out in the car, anywhere
She insists she can live on her own,
She wants her house back
That was my house,
Who's living in it
Weres my money for my house
We try giving answers to everything she asks, but it, just never stops,
She finds something else
I am falling apart mentally and physically,
I have a daughter overseas, she's a young woman 45yearsold,
Unmarried she misses her mum and I miss her,
I feel trapped
I. Am. Losing all hope and faith in myself as to what to do or say anymore
We ask ourselves, how much of this is dementia, and how much is,
I want you to feel as guilty as I can, for leaving me here,
Thank you for listening to my story,
And may I add
My empathy is your pain in my heart,

 

[canary]

Hello @Auckland and welcome to Talking Point.

I must say that this all sounds like dementia to me.

Wanting to "go home" is almost universal, but when someone with dementia says that what they are actually asking for is to go somewhere to escape the confusions of dementia. If you ask her about her home and perhaps get her to describe it, you will probably find that the home she is thinking of isnt the one she left. My mum wanted to "go home", but the home she wanted to go to had been bombed during the war. She still expected it to be there, though, complete with her parents and siblings, who she said were all waiting for her, when in reality they were all long gone.

Mum also liked to go out and I really feel that she felt that if she went away from the home, then she would leave all the confusion of dementia behind - this is probably the same with your mum and is the reason why she doesnt want to go back.

Seeing family is often the trigger for this sort of thought pattern and Im sure the carers are right when they say that she doesnt do it when you are not there. Many, many people on here have discovered exactly the same. Its not that they are being manipulative, its because there isnt anything to remind them.

Dont try reasoning with her - logic is not your friend with dementia. She will never understand why she had to move into her care home and has almost certainly lost the understanding of how money management works. All that will happen is that she will have a vague bad feeling about her home that will resurface when you next see her. When someone with dementia is unable to understand the answer to questions they ask, you have to meet their need where they are, so the answer is "love lies" or "therapeutic untruths" as they are sometimes known. This is telling them something that is untrue, but that they find acceptable and an answer to their need. When mum wanted to know when she could go home I told her that she was convalescing and could go home when the doctor said. If she wanted to know when that was I said I would be talking to the doctor later on. You might find this thread helpful https://forum.alzheimers.org.uk/thr...n-with-the-memory-impaired.30801/#post-413710

Once you have said whatever will pacify her in the moment, distract her - I used to bring sweets or cake for my mum for just this purpose. If distraction doesnt work, try and break the loop by finding something that you "must do", even if that is going to the loo.. A couple of other tips: watch your body language - many people with dementia are very good at picking up body language and mums moods used to reflect mine, so if I was anxious she would be too. Try and project a bright and breezy Isnt-everything-wonderful attitude (which Im sure you wont feel inside). Secondly, a trigger point for mum was when I wanted to go home - this would often trigger the "want to go home too" loop. In the end I never said goodbye to mum at all. I used to leave my coat and bag in the managers office, so there was no visual cue that I was leaving and I just used to say that I needed the loo and would be back soon. Then I would leave. It sounds mean, but saved a lot of distress.

Finally Do Not Feel Guilty. Your mum is safe and well cared for in her home. That is often as good as it gets.

 

[Auckland]

Thank you for your reply canary
Very insightful I totally understand,
what makes me question so many of mums comments is how precise she can be in her questions
Like she remembers were the house is, the exact address, and trying to distract her, she finds the words /sentences.
You are just trying to fob me off,
We do try the love -lies, but can get,
You are just lying to Me,
Yesterday we took mum. Out for the day, for us it's a long day, 6hours including travel, in and out of the car, wheel chair, and no appreciation at the end of an exhausting day for us,
Is it normal to have the begging, because, I have so much difficulty dealing with that side of it, because switching subjects, just seems to annoy her all the more
It feels like we are dambed if we do and dambed if we don't,
I don't like myself, for all all the resentment and anger I feel towards her
But I can't help it
I'm dreading going home in a couple of months, because of the guilt I know I am. Going to feel leaving her. Alone,

As she is constantly asking me why doesn't anyone come and see me.
But I know in my heart if anyone should go, and have in the past, all they hear is, please take me home,
And other people don't want to or won't deal with that,
Each time I go, I tell myself, I'm staying away for a few weeks
Then, the remorse slips in
And mum. Does not forget if we keep away for a week,
She's annoyed and makes it obvious,
We're have you been, I could have died,,
I feel in my heart,
I have no choice,
And at the same time I want to go home
To my life, my family

 

[canary]

Yes, this begging is typical. You just have to find a good excuse not to do what she wants. Dont try reasoning with her - it just makes things worse.

You will find that some things she can do, but other things she cannot - a bit like a jig-saw with pieces being removed, rather than an overall decline. She may be able to recite her address, but try asking her what her home is like and you might get a different picture. There are many, many people with dementia who are sitting in their own home and are able to recite the address of the place they are sitting in, but are nevertheless asking to "go home".

Mum too complained that "nobody visited her" and I have known her say this on a day when I met a friend of hers who was just coming out of the home as I was going in. By the time I reached her the friend had left only a few minutes earlier, but she still said that no-one had visited for weeks!!! In your case it is true, because you are unable to visit often, but be aware that she would probably say this even if you visited every day. Mum was also upset because "none of her family" ever came to visit - she told me this when I was visiting! The thing, is though, that by "family" she didnt mean her children (me) or her grandchildren (who also visited), she meant her parents and her siblings - all dead

It sounds like when you take her out your trips are several hours long. I think this is probably too much for her and she has got tired and more confused when you try and bring her back. Try being out for only a couple of hours and see whether this helps. I had to reduce the length of time mum was out until, eventually, I was unable to take her out at all.

Please remember that your mum is confused - some things she says may be true, but much of it is not, or is misremembered and twisted.

 

[Duggies-girl]

@Auckland You have your own life and home and a daughter who is missing you and you miss her. Coming all this way every year is not helping you and it seems to unsettle your mum.

You have done everything you can to keep your mum safe and can do no more than you have. Your mum is never going to be happy as long as she has the breath to complain and as @canary said you are the trigger that sets her off. I think you should go home. Your mum is safe where she is. Don't be guilty, your mum has a wonderful daughter but she will never appreciate you or what you have done for her. Go home because being here will not increase your mum's happiness. It's sad but you can't argue with dementia.

 

[marionq]

@Auckland the others have said it all. Go home and try to be happy leaving your mother in good hands. We can’t work miracles just do our best.

 

[Shedrech]

hello @Auckland
a warm welcome to DTP

you didn't 'put' your mum into care, you thoughtfully and caringly found a suitable placement for her to provide for her care needs ... in your words
We fought tooth and nail to get mum. Into care, on the grounds there is no other family for her

for me these sentences are key
Tells me, she walks up and down the corridor every night looking for me,
I'm assured she doesn't
I'm told she's all right when we're not there

so the staff in your mum's home are confirming that actually your mum is fine living where she is and doesn't day to day behave in the way you describe .. I'm glad you are able to talk with them and so see the other side of your mum's life

sadly, a person can show this alternative side to family ... but it isn't the 'real' picture .. and it's tough on you because you simply are unable to visit as much as you may ideally wish to, so it plays on your mind and emotions

your daughter needs you, and you need your own life ... I wonder what the you now would say to your daughter about caring for a possible you in years to come; maybe you yourself need to listen to the advice you would give her

you can't be in 2 places at once .. be kinder to yourself

 

[Lawson58]

Just a thought or two.

Neither your mum or you are happy when you are visiting her. She is laying all her unhappiness at your door. Undeservedly.

You would rather be at your own home where both you and your daughter are happy. You really can't do any more for your mum but you can for your daughter and yourself. Ditch the guilt and do what's best. I know she's your mum but you are a mum too.

 

[Jintyf]

Dear @Auckland please be kind to yourself. You have done so much for your mother, What a devoted daughter you are to have sacrificed so many years looking after your parents whilst putting your own life 'on hold'. You say you now feel you are falling apart and I know how that feels. I felt such pain and confusion whilst putting my mum into care and she too 'turns 'on me.

This is a horrible disease as it throws in all the extra emotional stuff we get with the dementia causing anxiety and lashing out that don't happen with other illnesses.

My Mum told me recently that my father would be furious with me if he knew what I had 'done'to her - eg putting her into a home. I know my Dad would be proud of me and I am learning to feel proud that I did everything for Mum for many years

I moved home to be close to her and dad in 2013 after 30 years away. I nursed Dad who died 6 years ago and looked after Mum for 6 years before she went into nursing home this March.

The guilt has been unbearable at times but I am slowly getting my life back now and appreciating what a commitment (or sacrifice really) I made to my husband and my own life these past 6 years. My own health took a toll but is improving as I am taking much better care of myself.

Like others have said, you already done so much for your Mum. She is well cared for where she is and fine when you are not there. Go home to your daughter who loves and misses you.
Safe in the knowledge that you are a wonderful daughter. Huge hug.