Carer, care for thyself!


#1
Hi all,

Started a thread recently about my Mum going into a home from living with me. Heaven knows, I am not over that! However, I have been reading a lot of posts from others on this and the Alz.Soc website. I am struck by how much some carers are dealing with and cannot imagine how they cope. All this carer stuff takes its toll.

I had to go into the bank this a.m. before work to sort out some Power of Attorney business for my mum. I have always been an even and reasonable person hitherto. This morning, due to problems of getting things done as POA and the frustrations, I stood at the window in bank and heard myself saying, quite loudly, "Call yourself a bank?". Shortly afterwards, when some other poor sap was dealing with me in the middle of the bank at his silly lectern/desk, I just burst into tears. I was so embarrassed. If only things were set up to make things more bearable instead of to make them more difficult!

People keep telling me I must look after myself, try not to worry, etc. but it is not easy. It takes time and is ongoing. I need to pull myself together for the sake of husband and child - and Mum. I could really do with some help and there ain't none, so thank goodness for this website.

Some people on here have suggested a Carer Assessment. Good luck with that, anyone who has one, as I found this useless when Mum was living with me. The social worker arranged respite care but I had to find the home (I wouldn't have put a dog in the one they offered - terribly scruffy and depressing)and fill in various forms, get time off work to meet them, etc. All in all, the hoops I was required to jump through just added to the stress/distress.

Going to GP on Friday in vain hope of support. They usually advise lose weight - the answer to all ills, apparently. Which sends me straight to the buns when I get home!

Has anyone got any good ideas about how carers can care for themselves better than they do?

I know there are carer organisations but the trouble is, like many others, I don't have time for meetings in the day time due to work and carer responsibilities.

Now mum doesn't live with me, people seem to assume all is now hunk dory. But there is still loads to do (visiting the home, arguing with them about care issues, chasing up bank, etc).

Trying to find time to sit quietly and calm down - well, working on it!!!

Any tips?

love to all,
The Choogler

#2
I know you will prob tell me you havent got time or are too busy . But , can you find a new interest , maybe set aside just 1 afternoon or evening for YOU ..

I had always done everything with my husband but I made a new friend I go out 1 evening wih her to bingo . I found it very difficult and had to make myself go , my thought kept drifting back to my husband , but gradually I started to find it easier and I would feel quilty when i reaised i hadnt worried about him for an hour .
He is really pleased that I am going its only for 3 hours but it does do me some good . I also have something different to talk to him about .

The times I do get extra stressed I try and remember to drop my shoulders and do some deep breathing exercises . If learn how to do them , it might take a while ! you practice doing them and then you have always got a crutch when needed . I do hope this helps

#3
Hi everyone,

I looked after my husband and his extensive medication for near on thirty years, he managed them himself to start with but that was only in the beginning.
I was already disabled with a chronic back condition and outside the bungalow used a electric wheelchair so you can imagine how difficult that was once he also had to use one. We still kept busy with day centre, branch and some limited social events but try a holiday on our own forget it, we did manage a couple of holidays which I organised for our branch about twenty of us went and it was really good.
As a carer I never had a smooth ride with anything,when I really couldn't manage any more about twenty years into pd the social worker said we didn't have enough need and it took my doctor,the district nurse the pd nurse and to persuade him.
I get really frustrated by the system as we took part in a study of the reality of Continuing care with the PDUK in 1996-1997 which looked at care at home. It is too long to go into here but they couldn't really agree on the best way forward. The actual experience for us was hard work and constant problems even with twenty-four hour care,it was not so much the carers but the office management keep changing staff we had 80 in two years not because of us because they can't seem to manage properly.The whole system needs to be addressed as most care companies don't pay staff the travel time between clients which means they can work many hours for less actual pay. We had some very good carer's who worked twelve hour shifts which they liked as they then new what they would earn every month.
After two years of this our consultant decided that the stress was making me really ill and I must say the last two years nearly killed me off.
One of our friends had direct payments which is good as you have the same you choose but you have to cover for sick but if they are good they will cover each other.Don't think it all ends once nursing homes take as you rightly say it is still a matter of sorting one problem out after another.
It is very important that people do take care of wills and enduring power of attorney years before you really need it as then you can forget about it, also my husband has signed a do not resuscitate form as he also does not want to be peg fed, which I am also about to do.
Sorry its not a positive reply but sometimes you have to tell it as it is in order to get change. It is a very real problem and I hope PDUK will be addressing this issue soon.
best wishes and as my uncle said don't let the beggers get you down,
also try a massage it does wonders and we both had this on a regular basis, not to each other I hasten to add.
vivian

#4
Hi Choogler,
Yes it is hard. I tend to agree with Johnnie , one needs to find something ELSE to do which one can enjoy, I also think one needs to find a way to accept the situation, this is not easy I know. One needs to be able to sleep ok and get enough rest, this may involve saying 'no' to some demands. Would it help to take something up? like I took up pilates, at first I really pooh poohed the idea saying I had neither the time nor the energy, but I did in in the end because was getting bad tempered moving my h around cos I had sciatica and now the sciatica is gone and my temper is better again. The other thing I do is I am a Buddhist so the Buddhist philosophy really helps me. Maybe you have something like that , that you could give more attention to OR what about some counselling , to be able to go and talk through with a listener how you feel about it all, what you cannot accept about it all and make a plan to help you feel better, because the way we feel about something makes a lot of difference to how we cope. Bursting into tears in the bank , out of character, shows you are really hurting , you dont deserve this. Is any of this any help? Does it give you any ideas ? love sunray

#5
Hi Choogler,
Just got back from visiting my husband who is an hour away as there are no nursing homes that can cope with his condition nearer.
Sunray has all the rights ideas so i hope you will be able to manage some time for yourself I know it's not easy with you working as well as your family, but there may be a carer's group within your local branch?
We all love our families and wish to do the best but we also have to be kind to ourselves we can only stretch so far. Our son has been really great he is 40yrs old and goes to see his dad most weekends but I have told him it is not expected as he has to have a life too! also his dad know's how much he is loved.
If you like to swim that is also very relaxing and you can't be reached when you are in the pool you can lose yourself a bit as well as good excercise or just enjoy with the family. When I drive back home after a visit I play really upbeat music quite loud and that helps me but I still have days driving with tears a plenty.
all the best
vivian

#6
Dear all, Thank you for your replies. I have so much to be thankful for and must get off my a*** and do something!
Best wishes,
choogler

#7
I am a carer and I have pd.
I care for my mum who has dementia and lives in her own home with carers coming each day but there is still loads for me to do all the time. I never catch up.
I know the stress of it all is making my pd worse and mum really needs to be in a home where she can be looked after better. I tried to explain this to mum but she does not realise that she has carers and sees no need to go into a home.
My husband has explained to her that I have pd and cannot continue to do what I have done but she has never been the sort of person to consider others. Sorry to say this but it is true. She is very difficult and always has been.
I was carer to my father in law and he was always grateful, keen to be as little trouble as possible and looking after him was no chore at all.
My husbands step gran who also has dementia has willingly gone into a nearby home so as to spare her children the worry of looking after her.Why cann't my mum be like this.

I have asked for a social services reassessment and I am waiting for it. I don't holdout much hope, mum is self funding and they are not interested.
What else can I do to reduce the stress for myself

I have 3 brothers but 2 live away and the 3rd has Aspergers and does pop in when I am away. I have asked them for more help but I still end up doing everything.

My husband is very supportive but he is pressurizing me to put mum in a home for my sake, I agree with this but how do you do it without their consent.

#8
Hi Mandybike,
I just checked in here to see if there were any more responses on this thread and read your post.

If you haven't done so already, I think you should start a new thread asking for advice. In the meantime, you could try talking to your GP. Mine was quite supportive and constructive at one stage. You can't count on them for ongoing support but they usually know the local set up and can advise on homes. Also, you could try the Alzheimers Soc website. They also have a forum which is particularly aimed at dementia sufferers and their carers. Alz Soc also have local contacts who might be able to offer advice/support. Hope this helps. You have my sympathy and respect for all you are doing.

I still wish someone would come along with a magic wand and make my Mum just that bit better so that she could come to live with me again. I was lucky because she was really glad to live with me and grateful for my care-giving. I think that just made me feel so much worse about moving her into a care home. I still feel I let her down when she depended on me to spare her. Nevertheless, for my own and my family's sanity, I know I did the right thing.

Best wishes. Choogler

#9
I have a home all ready, the one my husbands step grandmother is in, it is lovely.
How do I get my mum to see that I cannot cope with her anymore mainly because I have pd. My doctor/pd nurse are supportive and say I must think of myself.