Guilt and all the other stuff that goes with demetia care

datcat101

Registered User
Sep 29, 2011
9
0
I've been caring for my Mum for just over 2 years now and today I called SS for a assessment because I cant do it anymore on my own. And I'm feeling so guilty about it.

Mum has all the usual random problems that goes with mixed dementia and up till now I have been (ha) coping with them, but I am finding myself becoming more and more resentful of the fact that my life revolves around cooking, cleaning and trying to keep Mum happy. And in fact it's at the point now where I'm wishing for a crisis to happen so it's taken out of my hands.
And I know from reading posts on here that I shouldn't feel so guilty about what my Mum wants and only concentrate on what she needs, and she needs more than I can give her so hence the SS call, but I am sat here crying my eyes out because I feel so guilty and almost like I have betrayed? Mum by setting actions in motion that I know that she is going to hate.
(gosh that's a lot of I's in the above)
I have a partner is quite supportive and who says he understands, but sometimes gets annoyed by it all and says my 2 sisters should help more, 1 in that London who comes down about once every 2 months because she has an allotment and runs every weekend (bitter, me? Yes) so has a life and one who has health issues plus a not good relationship with Mum so she sends her husband over to Mums to make sure she is ok at night and although he is a fantastic bloke is a bit of a chocolate teapot. And I know he finds it hard because he has a quite stressful job and his own Mum has Alzheimer's.
I am so sorry for rambling, but sometimes rambling is the only thing you can do.
 

PeggySmith

Registered User
Apr 16, 2012
1,687
0
BANES
"but sometimes rambling is the only thing you can do. "

Absolutely. Not that I think you're rambling, really:) and I'm sure everyone on here will sympathise with your situation.

Please just remember that once all that stuff has been taken away you'll have time and strength to spend social time with your mum and enjoy her while you still can. BIG hug
 

SisterAct

Registered User
Jul 5, 2011
2,255
0
71
Liverpool, Merseyside
Dadcat of course you feel guilty because you are a caring person.
Everyone is different and we have to do what is best for our loved ones and ourselves which will involve some horrible decisions. You have no help so you need to become a daughter again and not the carer. I look after Dad 24/7 but with the total support of my lovely sister and we might one day have to make the same decision as yourself. We have cared for Dad for 7 years but as you know things only get harder with this illness and we get older and ill ourselves. Who knows what is around the corner?
You are doing a great job
Luv
Polly x
 

Big Effort

Account Closed
Jul 8, 2012
1,927
0
Hi Datcat!
If it helps, I am in exactly the same situation. My life after looking after Mum for 3 years has become as small as hers. Also I have to get work as we need the income, no choice at all on that front. So I have completed the forms for her to go into a home in September.

Am I relieved? No.
Happy? No.
I just cry and cry, and when I am not crying I have just slipped into a little wishful thinking (i.e. maybe she isn't so bad after all and I can keep her at home while I go to work).
This dementia stuff really is hard emotionally. No happy outcome - and I want a silver lining in all this. More delusions on my part.
Guilt? Certainly and lots of it. Mum still doesn't know about the home, she will not find that acceptable, so I am hiding it from her. How will I get her in there? My head says this is the only way forward, but my heart cries that there must be a better way - for all of us.
Keep me posted on how you are coping. Some people are saints, particularly the chocolate teapot (what do you mean by that?) bro in law - gosh he is dealing with two dementia patients - small wonder he is stressed.
Somehow we will both get through this. Look at the forum, other people have.
 

SWMBO1950

Registered User
Nov 17, 2011
2,076
0
Essex
Hi

Feeling guilty goes with the territory. The ones who normally do the most are the ones who feel the guilt and not the others 'the invisibles'.

A SS assessment is not the end of the world honestly. They may well be able to put processes in place to actually help you (you have made no mention of carers helping with your mum). I honestly could not manage with out my Mums carers as they give me a modicom of a life!!

As your mums main carer you have nothing to feel guilty about. You are doing your best to keep her safe and well - what more can anyone do? Be thankful for the support of you partner - it is worth its weight in gold. It maybe time to have a few words with those sisters of yours too - no one is an island!! ;)

Wipe you eyes and wait for the assessment and see what transpires - it may not be as bleak as you think.

Please let us know how you get on :)
 
Last edited:

kingmidas1962

Registered User
Jun 10, 2012
3,534
0
South Gloucs
the only comfort I can offer comes not from me, but from my mum who has just gone through caring for my dad for years - he went into a care home just 6 weeks ago, initially for respite and now permanently. She hit rock bottom after her caring 'job' was taken away and suddenly she was on her own. That doesn't sound very comforting does it? No. Well....

... what I CAN tell you is that having reached rock bottom she is very, very slowly on the way back up.... she is having counselling to help her deal with the guilt, the grief and loneliness, she is learning to adjust to a new role. We are visiting dad in his home, and whilst he is not WELL (of course he can never be, he has a dementing illness) we are both seeing that she did the most marvellous job in caring for him - which she can no longer do. To accept that, and hand your loved one over to someone else is really hard. And sometimes there is no better way.

So - I offer you her experience with hope for the future.

oh, and a big virtual hug too :)
 

PeggySmith

Registered User
Apr 16, 2012
1,687
0
BANES
I wish I had a magic wand and could just disappear the (completely unnecessary) guilt for you Datcat (by the way, I love your name)... What do you think your mum is going to hate? Carers coming in to do the cleaning and cooking? You might be surprised (I hope).

Big Effort, a chocolate teapot melts away when you pour boiling water in it thus rendering itself utterly useless:)
 

Tooshie

Registered User
Apr 28, 2012
183
0
Newcastle upon Tyne
I share your feelings, plus some anger too...

My Mother continues her reign of terror. I worked solidly at home this morning, but by 12.30 2 appointments cancelled on me this afternoon and the sun was beaming down. Decided to sit in the garden and relax after doing a 61 hour week last week. Oh no, not on Mother's watch....

When she noticed me put my laptop away, she started rummaging around, mumbling. Saying the doors need washing, and then banging on about the kitchen and utility room blinds being "scruffy" (but I took them down at Christmas and scrubbed them clean then, and I dust them often!). To keep the peace, I grudingly took down the offending blinds, and tied them to the washing line and lathered and soaped them, hosed them, then washed the windows. Next I polished and hoovered the 3 bedrooms and bleached the loo and vacuum (and she had the cheek to warn me to be careful with the cleaner because it contains bleach and I might spill it on the carpet - like I'm a 12 year old :mad::mad::mad:). Then I vacuumed the stairs and lounge - by then I was bright red with anger because I felt like Cinderella - everyone else out in their gardens or soft tops enjoying the weater. All I wanted was a few hours of rest in the sunshine, maybe listen to some soothing music. How selfish and demanding is she? Just because she hates the sun.

When rehanging those horrible lace cross over curtains on top of the 30 year old venetian blinds, she insisted that she knew which curtain was for which window. Yep, you guessed that she got it completely wrong and by then I'd had > enough. I am afraid exploded. The atmosphere was electric. Strong words exchanged. It took all my strength not to completelyu loose it, but I think by now she know how I feel about her and about her ridiculous demands. I cannot bring myself to even be in the same room as her this evening. How bad is that?

I am not a dirty person, quite the reverse but I do hate housework on sunny days!

She threw £20 at me - I earn > that an hour. I told her to put her money to better use and hire a cleaning lady to save me some discomfort (not exactly a young chick myself and trying to get my house pulled into shape to move in, in between her demands) Because I am her daughter she think's it's my duty to 'muck her out'. I have no life of my own.

Tonight my back is aching from doing those damned blinds and windows - who on earth cleans like that these days? Those jobs are for overcast days when you can't go out and enjoy the odd rare afternoon of soleil.

Sorry to bang on - I am tired, but even more ANGRY :mad:

Tooshie x

PS Now off to post about the events of last weeks Oncology Review - what a panto that was....
 

datcat101

Registered User
Sep 29, 2011
9
0
Thanks all

Well crisis time came. I broke. I sat in the car on the way to take Mum shopping and she asked me 1 question and I broke. After a trip to the doctors and a prescription of diazepam which came with its own horrible reactions. my elder sister, my wonderful BIL and my partner have taken over because I cant do it anymore.

SS are doing a assessment on Mum as I sit here and I so want to be there but I know that if I was I would be no good because the moment I even think about Mums care I break down again and that is of no use to anyone. I have written a list of Mums behaviors and actions and sent that to the assessment with a letter saying i have stepped back and they are going to have to take over.

I hate this awful illness so much. I'm grieving for my Mum who is being taken piece by piece and what is being left is a shell that looks like her, but isn't.
 

New Phoneix

Registered User
Aug 6, 2012
1
0
Apologies for the spelling mistake of my user name, I was so eager to respond to your message. I emphasise with you totally. My 89 year old mother has vascular dementia and we have lived together all my life, 55 years. I know what people mean now when they say that their heart is broken. I recently had to place Mum in a nursing home after a health problem of acute back pain due to osteoporosis. The dementia kicked up several notches along side the pain and my partner and I who both work full time just couldn't cope. We tried so hard to keep her with us. I have never felt guilt like it. It is just so sad because she was really happy with us and I feel as though I have lost my best friend and failed her as a daughter. She's been in the home for just over a month now and isn't handling it at all well. It is a very traumatic time but we are learning to take each day as it comes, there isn't any other option really!
One day she's the life of the party the next she wants us to kill her. It is just a roller coaster of emotions. The lesson I have learnt is that you can only do your best and if in your heart you know you've done that then please don't reproach yourself. Dementia is a terrible disorder and not something that any of us should have to face but for now we have to be strong for our parent. Please try to find some enjoyment n your time together, it is possible. I hope it helps to know that you are not alone and that others are going through exactly the same thing.
 

mcgradie

Registered User
Jun 17, 2010
134
0
To Datcat

Hi Datcat

Just quickly wanted to add me and my sister know exactly how you feel. We have young children and live 60 miles from our mum and we have been supporting her for over two years by ourselves. We are used to that rollercoaster of emotions. In May we had to remove her car and had various suspicions of people trying to get money off her, any upshot was after a fairly useless meeting with SS whose first recommendation was a live in companion (she told me and the SW to leave the house) was we have employed a care agency who now do 14 hours a week to supplement the 4 days a week we do between us. They have made a massive difference to our morale. I researched agencies, rang about 7 of them, and this agency are brilliant.

Told Mum they were cleaners and that worked.

Good luck. Main things to remember are (a) don't feel guilty (b) agree with your mum/dad all the time (c) don't reason with them (d) make sure you get some time out yourself otherwise you will go crazy because other people really don't understand how hard it is to support someone with dementia - particularly my sister's and my partners.