New to the forum and to dementia

[vdg]

hi,
I came across this site by accident while researching my mother's diagnosis.She was admitted to hospital last month with "chronic on acute confusion" and was there 29 days coming out just yesterday. At first they told me she could go home with a care package from social services , but as they can't administer medications that wouldn't work. Then they told me she needed to be in a secure unit which shocked me and on challenging this I found that the notes had been wrongly written up making her sound like she wanders a lot and is difficult, whereas all the nurses who were looking after her said she was no bother. Eventually it was decided Mum should go into a dementia registered residential home and that is where I took her last night. The hospital release notes say she is continent, yet as I have been doing her laundry for some time I knew this is wrong.Eventually they listened to me and found she had a bad rectal prolapse.Now my poor Mum has the indignity of being doubly incontinent, as well as losing her home and her independence because her mind is not doing what it used to. I'd welcome any advice on how to help her adjust to all this.
I openly admit I am relieved she is now being cared for as visiting her every day and looking after everything for her was taking it's toll on me.However I do feel I have failed her by not being able to continue, the trouble is my husband was getting very neglected and I also do childcare for my little grandsons in term times when their parents are working and I just couldn't keep everything going.
My Mum is the only one of our parents who has gone this route[in laws and Dad all died ] and I have no siblings to help me.

 

[Vonny]

Hi vdg and a warm welcome to Talking Point.

You and your mum have had a lot to adjust to recently. It must be especially hard for your mum as things have changed so quickly. I think she is in the right place though. You know you cannot sustain the level of care you were giving, let alone a higher level, and your mum is safe where she is, and safety is probably the most important thing.

Have you taken some pictures and bits and pieces from her previous home to try and make her room look a bit more familiar? If she doesn't seem to settle at first, don't worry because it takes a few weeks to get used to the new environment and new people.

You have not failed your mum. You have done your best to help her. Continuing with your previous care plan wouldn't have helped her at all if you had fallen sick by trying to do much. You are a daughter to be proud of

Vonny xx

 

[vdg]

hi Vonny
Thank you for your welcome. Yes I took in some photos and a small chest thingy that she keeps bits and pieces in. She didn't comment though, in fact I am not sure she really recognised the chest at all.
It has felt really wierd today though because for the first time in I don't know how long I haven't been with her, haven't been doing stuff for her.I kept wanting to call the home to see if she was ok but was advised not to, and every time the phone rang I thought it might be them saying she was upset and would I go in but it didn't happen. I so hope she will settle there as if not I really don't know where else would be as good.
I am going to visit tomorrow to take in some more clothes as I know she is anxious about keeping messing things and needing to change.
Next week we are due to go away for a few days. I have been told it is important to still do so but I shall feel guilty about leaving her.All this is going to take some getting used to. I have been the only person she has looked to for help in the 7 years since my Dad died and since she got the dementia starting she has relied on me more and more.

 

[Vonny]

Hi vdg, it will probably take you as long as it takes your mum (or longer!) for you to settle into the new regime.

A few days away is a great idea, both for your mum and for you. Give you both time to get used to the new arrangements. I do hope that like (username Cl13) Lynn's mum, your mum will find a "best friend" very soon. (Lynn, hope you don't mind me quoting this, but it's great news and gives us all hope )

Vonny xx

 

[Amber 5]

Hi vdg

My mum has also recently moved into a care home, well it's now about 7 weeks and it still feels like yesterday. I had to go on our family holiday only two and a half weeks after she moved in and although I really needed a holiday, I felt very bad at leaving mum.

I've got to say that it was a huge relief to find that she had survived without me and although hasn't found a best friend, she had become more used to the new routine and had been safe and well fed while we were away. It is hard, but I hope you can enjoy a few days away. Hopefully you could still phone the home or your mum to check she is ok, for your peace of mind. You know your mum best so you will do what is right for both of you.

You will really benefit from a short break and your mum will be looked after and kept safe.
Love Gill x

 

[Margaret W]

Dear vdg

I am sure your mum will be fine while you go on holiday. I know what it is like, being the only family member involved. But you have you to think about as well. You know mum is somewhere safe, caring and loving, so go enjoy the holiday. By all means leave your mobile number, but they won't call you unless there is an emergency. You might get back to a few niggles, like she has the wrong person's clothes or they forgot her nightly glass of sherry. but it won't matter.

Enjoy your holiday.

Love

Margaret

 

[vdg]

It's good to hear that others have been on holiday and all has been well
I think I am just finding it hard to hand her over to other people, especially as I don't know them. Her decline has been very rapid so it is all a bit sudden.She wasn't too bad a couple of months ago, then she got an infection at the beginning of May and was very poorly and the confusion escalated from then. I continued to kind of manage by paying a private carer to go in 3 days a week but I still ended up going in on those days too as there was always some problem or another that needed sorting, then at the beginning of July Mum started to do very odd things and say very odd things that rang alarm bells for me and the other carer as well as the warden at the flats she lived in. That's when she was admitted to hospital and everything has spiralled from there.
The home have my mobile number so could call if need be. We really do need this holiday as much as anything because my husband has had so little of my time for a while now.Also I am exhausted so a rest will be good

 

[Cl13]

Hi vdg, firstly can I say welcome to TP, you will soon feel among friends here.
Your mum and my mums journey into care are almost the same,
mum was also admitted to hospital in a bad state of confusion, which was because of a rather nasty UTI, UTI causes dementia patients real problems, for mum it brings on her LBD hallucinations and she becomes extremely delusional both symptoms of DLB, but I found being in hospital made her worse, she was continually confused and spent all her time wandering up and down,
I like you was dreading the day mum moved into the home and two weeks later I too was going on holiday, I couldn't sleep, cried all the time and the guilt was overwhelming,
All this was 5wks ago, apart from mum putting me on a guilt trip
mum settled better than I did, when I got back I found they had moved her into a different room, she loves this room, they told me a few days ago that they moved her because of the big tree in that part of the garden, LBD sufferers have hallucinations that cause them to see people in tree's and mum was upset because she could see children all the time in the tree, her new room has a different outlook and mum is as happy as Larry,
as Vonny told you mum as a new friend and for now fingers crossed everything is good for mum.
Its bound to be strange at first, but your mum will meet people she likes, and trust the people that look after her, I dont stay long when I go to see mum, I live two mins from the home so I just pop in and out when I am passing, like a neighbour, I take her out for lunch or and a stroll around the town, if I can but
I never tell mum when I am going, I just turn up, because times and dates and days do my mums head in, she would be checking she hadn't missed it 24/7, so we dont make any kind of arrangements.
Go and have your holiday, try to relax, I know its easier said than done but you will find your mum will have come to know harm while you are away.

Take care

Love Lynn xx

Vonny of course I dont mind you talking about me lol xx

 

[PeterG]

There is a common thread amongst many of the posts on these forums, "I feel guilty for . . .".

I've no idea how we lose this feeling, I am told not to feel guilty as I did all I could have done, & more.

I still feel guilty.

Maybe these feelings will pass in time, in my head I know I've done the best I can for Jen, in my heart I feel like s***.

Have your holiday, we are all just living a different life than we did before, its still your life.

Hope you have good weather!

 

[vdg]

I visited Mum this morning.When I got there she was in"Poetry Reading" which I thought was lovely but when I asked her about it she said it was no good because everyone mumbles so she can't hear it.She moaned about everything in fact, except the food which she seems to be enjoying.She had run out of pads and I discovered that as she hasn't been assessed yet I have to provide them for her although they have given her some to tide her over til I can get there with some. I discovered she has been trying to flush them down her loo so I explained that it would block things up, I don't know if she'll remember though
When I left I was overwhelmed with sadness and guilt as she seemed so depressed .I should have been prepared for it and yet I think in a way I was hoping for the impossible-that I'd find her settled and happy.I know it is early days though- very early days. I'm really, really hoping she'll find someone there she can relate to and become friends with.She is very private and shy though and finds it hard to mix with people so it won't be easy, especially as she sees all the other inmates as far worse than she is and therefore says she has nothing in common with them.
The incontinence was a real problem today and I ended up cleaning her up because she won't tell the staff when she needs help.I've asked them to assess her for having free pads and also told them she is in pain from the prolapse.She won't tell them
I hate leaving her there like this but I know I cannot look after her . In a way I wish her dementia was bad enough that she didn't know what is happening to her and where she is. Is that wrong of me to want that for her?

 

[Willowgill]

Hello vdg - as someone who is also just experiencing this I'd just like to say welcome to TP and please go ahead and have your holiday. Both you and your husband need the time and space to be together away from the pressures of home and your Mum. It will also give you time to talk and hopefully when you return your Mum will have settled into the daily routine of the care home and you can enjoy being with her as a daughter instead of a carer. WG

 

[vdg]

Thank you for the welcome I have spent today preparing to go away but I am constantly thinking about Mum and worrying about her, I'd hoped that once she was in the home I may sleep a bit better but it seems not
Can anyone tell me how long it takes to get used to this idea that she is not my sole responsibility any more?
I am seeing my counsellor on Monday [hols satrt Tuesday]so hope to be able to discuss it with him too as I am really finding it hard to "let go".
Maybe being away will help. Going to visit her tomorrow , last visit before we go, just to make sure she has what she needs and is coping.

 

[Amber 5]

Hi again Vdg,
My mum also doesn't feel she has anything in common with the other residents and feels she is fitter than any of them. Also doesn't enjoy hearing people talking about what is wrong with them etc. I think she mostly sits alone in the dining room to eat her meals which I find very hard.

She often has a moan about something or someone or other and I just try to make a general comment like "oh well, everyone has their off days" or "they are probably feeling unwell" so as not to dwell on her comments; then try to distract her with something else. On those days I come away feeling quite low, guilty etc. but there are other days when she seems to be really enjoying an activity, or has been on an outing which went well. The good days make all the difference.

It has taken about 2 months for me to feel better about how things are going, and to be honest, I think going on holiday did me the world of good and enabled me to have a break away from the constant worry I had before that. It doesn't take away the worry and although you want to be there for your mum, she will be fine and well looked after when you are away.

(I had a meeting with mum's care manager befoe I went away with a list of a few niggles that I needed to discuss) and had been promised that my brother would visit whilst I was away, but he didn't do so (that really bothered me a lot, but it meant that my mum had to cope without a family member visiting - and she did!) Maybe this was a positive, as mum seems to know people better now and is comfortable with the staff. They have also had a chance to get to know her better.

I could have almost written your post a few weeks ago, and now I am telling you that things are going ok!!! I really hope that you can have a well-earned break and that you trust the care staff to take good care of your mum.
All the best, love Gill x

 

[vdg]

hello Amber,
Your post sounds like my Mum and yours are on similar paths. Mine has never been very sociable though, in the flats she lived at before the warden had lots of things going on but Mum would never join in.All she wanted was me.She has been that way since dad died 7 years ago, before that all she wanted was him.
She complains that I have put her somewhere where they are all"Ga-ga" , which isn't true at all.There are lots of lovely people there who are physically frail but their minds are very bright, far brighter than Mum!
We haven't had any good days yet, but of course it is too early as she only went there on Wednesday.My husband is going to visit with me this afternoon.The pattern before she went into hospital was that she'd always be a lot easier and more pleasant when he was around so I hope this is the case today.
While we are a way the lady from her church who is in charge of her pastoral care[ the elders each have certain people they are responsible for] said she will visit her just to make sure she doesn't need anything.
Thank you for giving me hope and encouragement from your post. I hope in 2 months I can be feeling as you do

 

[singring57]

Hello, and welcome
My mum has been in a care home for nearly 3 yrs now and I still feel guilty / and that I should have looked after her, as probably we all do. you have a life as we all do and a family, its getting the right balance, I miss seeing my mum and doing the things we used to do, but I know shes in the best place and getting good care, hope the holiday went well.
Visit your mum when you can and like the others said take some of her personal posessions to the home, she will like that and it may help her settle in more.
Jx

 

[vdg]

Had a call from the home yesterday to say she is in bed poorly.The prolapse is giving her a lot of pain. When we got there the district nurse had been in to see her, she'd had her meals on a tray and cups of tea etc brought up to her and seemed a little more appreciative of being looked after.
I feel better about her being there because I know that had she been in her flat she'd never have coped and I would not have been able to get the nurse out to her as promptly as the home could. I also can be sure she'll be looked after while we are away.I'll visit again today, I wasn't going to originally but as she is unwell we decided I ought to.Then we'll be away for the next 6 days.
She has decided she doesn't want any of her own furniture brought in, I'm not sure why but suspect it may be because she sees that as a very final "move" to the home.She was very confused yesterday though, and kept asking if I'd come for her shopping list like I usually did.At least she still recognises me, although I do wonder how long before that changes as she has forgotten most of the rest of the family.She can't even remember what my Dad's name was

 

[Grannie G]

Your posts are full of sadness.
I`m sure you must feel relieved your mother is in a home now she needs so much care. It is shared care by people who work a set number of hours and this is what makes it so much easier for them than it would be for you, caring alone.
I hope seeing a counsellor today will go some way towards helping you. You sound weary. I recognize the feeling because I feel weary too.
Enjoy your holiday and the company of your husband. It will still be here when you return.

 

[vdg]

Your posts are full of sadness.
I`m sure you must feel relieved your mother is in a home now she needs so much care. It is shared care by people who work a set number of hours and this is what makes it so much easier for them than it would be for you, caring alone.
I hope seeing a counsellor today will go some way towards helping you. You sound weary. I recognize the feeling because I feel weary too.
Enjoy your holiday and the company of your husband. It will still be here when you return.

Yes I do feel sad. Probably most of all because I feel I have let her down by not being able to care for her here which is what she wanted. I have striven to gain her approval for the whole of my life and have never been able to do so.In a way I think I saw this as my last chance to get it.If I could find somewhere she would be happy and cared for and she'd appreciate maybe I'd have got that smile and a "well done".I shall never get it now, for one thing she doesn't understand much these days and also she isn't happy about where she is[even though it is a really lovely place]I have spent 7 years trying to replace Dad as he did everything for her, but nothing was ever good enough.
I shall talk to my counsellor about all these feelings.He knows my history and the story of my upbringing so he may be able to help me let go of this awful feeling of failure and inadequacy.
In my head I know I have done my very best for her, my husband keeps telling me this, yet my heart is heavy with it all because none of it is good enough.

 

[Grannie G]

I do not know why some people have children when they give so little love and nurture.
My parents regarded us as a nuisance to be endured and I`m sure they only had children because it was expected of them.
None of this is your fault, it is your mother`s fault for giving you the feelings you have of inadequacy and failure .
People have children because they want them. The children don`t ask to be born. Having children is a selfish act and the least we can do is bring our children up to feel loved and valued.
It is my personal belief only but I really feel we owe our children more than we owe our parents.
I do hope I haven`t offended you by offending your mother, especially at this time of her life when she is so poorly, but it upset me so much to know how bad you feel when you have been seeking approval all your life.

 

[BeckyJan]

Hello vdg:

I have just read your thread and feel your sadness.

I have picked up this sentence

I hate leaving her there like this but I know I cannot look after her . In a way I wish her dementia was bad enough that she didn't know what is happening to her and where she is. Is that wrong of me to want that for her?

My husband has been in a NH since last December I feel terrible sadness all the time and wish I could bring him home. In that sentence you said what I have confessed too. It is a terrible thing to feel and I love my husband dearly. BUT we do our utmost and then have to give in to a wretched illness. In one of the factsheets it mentions that 'dementia' eventually takes over, we lose control - that isn't just the sufferer but the carer too.

Your mother will probably never be satisfied wherever she is, so thankfully you have a good place for her and know she is well cared for.

I am glad you found TP and hope it helps.

Love Jan