Feel so sad & guilty!

[Annief]

Hi, its my first time writing on here, although I have visited the forum numerous times. My dear 83 yr old mum has dementia and is now in an EMI home. I was her carer until June this year when she broke her hip. She spent 7 weeks in hospital after a partial hip replacement. While she was in the hospital she wouldnt co-operate with the physios and would scream and shout when anyone went near her. After a few weeks the physios stopped coming to see her.

Her dementia symptoms got a lot worse while she was in hospital and it was decided that she needed to go into an EMI home, which is where she is now. She is so unhappy!!!! Every time I visit she says she wants to go to her own house. She cries, and that is something she hasnt done for a long time. For the past year or so, she seemed to be very detached from emotion, even though she would be having awful delusions. Some of the things that she said was happening around her were were quite frightening, but she was quite matter of fact about it.

When I go and visit her she is sat in the lounge with some of the other residents, all of them in their own little worlds. It breaks my heart to see her there.

I know that she needs the 24hr care, and that I couldnt cope with her needs any more. Apparently she gets very aggressive with the carers/nurses when they dress/wash her.

My mum was also my best friend. Her house was at the bottom of my garden and apart from holidays we had seen each other everyday for the past 30 years. To see her spending the rest of her days like this is so distressing to me. Each time I visit I think it will get a little easier, but it doesnt, in fact it seems to get worse.

I now have the horrible task of clearing her house, because its obvious she wont be returning. I go over most days to clear things out,I feel so bad doing this, it is as if she has died.

Thanks for taking the time to read, I know a lot of you here are feeling exactly the same.

 

[piedwarbler]

Hi and welcome to TP. I could have written your post myself word for word. I know how you feel and it's horrid but take heart, there's lots of support here and you're not alone. Take care. You may find things get easier when you least expect it and you will be able to make the most of good times x

 

[lorrainet]

hi i know exactly how you feel my dad had to go into care in may i used to cry every time i left him. like you i knew i wouldnt be able to give dad the care he needed . hopefully your mum will start to settle in soon my thoughts are with you x x

 

[Necion]

Hi Annief, hello and welcome. You have certainly come to the right place for support and to share your problems and experiences with others in the same situation.
You now have lots more friends, and sometimes even getting things off your chest helps get a clearer picture and renewed strength. I do hope so.
Take care of yourself. Luv, Necion. x

 

[librarygirl]

I also feel exactly the same - I think it must be a very common situation. It is heartbreaking.
I send you my best wishes.

 

[Onlyme]

Its like an ongoing grief but without anyone having officially died. Outsiders can't understand why we breakdown as apparently our relatives are in the best place for them. Their bodies are there but they are slipping from us or have already gone. Its heartbreaking trying to do the best thing and knowing that nothing you can do will make your relative better.

Its a nasty, mean disease and we all hate it for what it is doing.

 

[Jancis]

Dear Annief,
I feel so sad for you - losing your dear mum to the care of an EMI home like this and having to visit and see her so unhappy. Your heart must be at breaking point and I hope you have some support from family. I hope too that sorting out the house doesn't put too much pressure on you - it must be very difficult. But most of all I hope your mum doesn't suffer too much physical pain with her hip problem as this might be the cause of her dementia appearing to be so much worse. She still has your love and I'm sure her depression might lift a little over time. Sometimes sufferers go through stages and it's not always a steep decline. I do hope you will continue to post on TP and let us know how everything is going. Whatever you do, please do not feel guilty - you are clearly devoted and have probably been caring (in a mutual way) for the last 30+ years?

 

[Annief]

Thank you all for your kind words and support, I have read them all with tears in my eyes. I will keep you posted on how mum (Jennie) is getting on. I do have support from family and friends but until it happens to "your Mum" they cant possibly know how you feel.

Many thanks xx

 

[Dogdaft3]

I too could have written that word for word. My lovely mum has been in a home now for just over a year and it has without doubt been the hardest year of my life (and hers!). She too went straight into care from hospital and I remember so clearly collecting her from her little house for the last time when neither she nor I knew that she would never be back, I feel such a traitor.

She has had a very difficult year with delusions and hating the home, partly because of these and partly because she just can't understand why she has to be there and why I won't take her home with me. Things became so bad this time last year that she tried to take her own life but didn't know what to do..she wrapped the alarm cord around her neck in her bathroom, and the challenging behaviour nurse then saw her for a few months with a bit of success.

I too have had to clear out and sell her lovely little house that she adored, really without her knowing although I tried at times to tell her and have felt so guilty and so sad in doing it.

I think over the year I have learned a bit to cope with the awful feelings of guilt but the sadness is always there although it gets a bit easier when she is happy on a visit ( and worse when she is miserable!). She has deteriorated a lot over the year and often it can be very difficult to understand her and she can still get very distressed(although like your mum her emotions often don't match what she is saying) but I think she is beginning to settle a bit better now and often visits are OK and we can even have a bit of a laugh together (although I often don't know what I'm laughing about!).

I miss her so much we used to have such lovely chats and she was always there for me to talk to and I can't now.

I hope your mum will settle a bit soon, it's so hard but I just wanted you to know you are not alone, there are others who are going through this too. TP has been a great help to me, I don't post that often but like you I read a lot and it helps. Take care of yourself too!

Love Dogdaft. X

 

[florence43]

Hi Annief,

Yes, I'm the same. Mum went into a NH straight from hospital after a very rapid and unexpected decline. She cannot speak but her eyes tell us she has given up. She's sad and confused and we try to comfort her, but she's like a little girl, left at school on the first day with no one to collect her. I know you know how much it breaks my heart.

We (my sister & I) are also clearing the house gradually. It's surreal, isn't it? Going through memories, speaking in past tense all the time. But it's a common feeling of grief and loss when someone you love suffers from dementia. They slip away and are sometimes all but "gone", yet we visit them still. Such a confusion of emotions. My sister and I have decided to back off a bit on the house. I think it was a knee-jerk reaction when she went into the home in July. The house had been getting dirtier and more cluttered over the years but we couldn't touch it for fear of upsetting her. My dad also lived in the living room for three years after a stroke in 2007, but died a year ago from cancer.

It was somehow refreshing to be able to get our hands on the mess...at first. However, it's struck us both that we haven't really come to terms with the fact she's in a home, or that she's never coming home, so we've agreed to take some time to accept that first before attacking the house.

Besides, we'll need to arrange half the skips in Surrey to clear the place...

But you'll find so many people in the same situation here on TP. It's so so sad.

Stay in touch, and be assured that only we share the relationship with our individual parent but that collectively we really understand the pain as we all have a parent or partner facing this disease. That will be a great support to you.

Take care,

 

[ChristineR62]

Annief, I understand completely about clearing the house. My mum lived with me; she went into the home where she still is now just before Christmas last year. In that time, I've barely scratched the surface with clearing her bedroom. I had to get rid of the mattress from the bed, as it was soiled, and a while ago, I made the decision to donate the wooden bed frame to charity - I still feel bad about that. Occasionally, I go in and find a bit of what is clearly rubbish and throw that away, but I can't bring myself to stay in there too long or do too much. I just feel so disloyal.

 

[Dottie]

Hi Annief & everyone,
the same story from me too - mum in a care home from hospital since July & now having to clear her house (my childhood home) ready to sell next year. This time last year things were so different & i am struggling to come to terms with how quickly things have changed. Dementia just crept up on us when we weren't looking & changed everything.

I am so so thankful to have found this site,

Love to you all,

Dottie

 

[Bally]

Hi

Remember all the good times and let those memories give you strentgh to carry on each day, remember your mothers smile and your chats there must be loads, 30+ years of sharing good and bad times. Remember her advise, love and courage.

If she knew what you where doing for her she would be so proud, she has done a great job with you, you care about all aspects of her care and many personnel matters, if she hadn't done such a great job in raising you, you would not be so caring towards her now.

My mum is in late stages of Alzheimer's, it's heart breaking.x

 

[christine_batch]

My heart goes out to everyone of you.

My husband was 56 when he was diagnoised with Alzheimer's.

Peter had to go into an E.M.I. Unit and the staff were brilliant.
My husband passed away age 62. Peter did not know I was his wife nor know my name.

After visiting I would sit in the car and sob my heart out.

This illness is the most herrendous for our loved ones and as Carers'.

Talking Point has been here and so supportive.

Unless people are walking the path we have come along, they do not understand.

God Bless
Christine