Carer needing help


#1
I put this on another thread and was advised to start a new thread

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. This home is lovely and mum could have the next space if she would agree.

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.

#2
Hello Mandybike,

I feel very much for you as my husband who has PD for almost 30yrs wanted to continue to stay at home, but it was making me so ill our consultant took the decision with my reluctant consent that now was the time for him to go into a care home as his condition has been very complex for most of the time he has had it. Have you got a good GP or Consultant that could talk to her. Also have you got enduring power of attorney of her it is so important and very helpful to have these things done early so it makes everything go more smoothly when the time comes. You have enough to cope with and your mum has had her life while you still have yours and that of your family to consider.I have told our son that if the time comes for me to go into a home I will as he has his life to live as well.
I appreciate how stressful these things are but you have your own health to consider and need to enjoy what good time you have with your family before you own life is restricted by this rotten PD.
All these decision are very painful but with you having a family yourself you have to be a bit selfish although that's not the right word really.
One last note has your mother had all the help she is entitled to and is she going to a day centre to give everyone a break.
I wish you well but do give your own family priority bless you
best wishes vivian

#3
Hello Mandybike, I dont know how you can get your mother to go into a home or how you can get a social worker to help her do this . What I can think of is, she has carers coming in to her house and of course I know this wont be enough but could you make a list of all the things you feel you have to do for her, and then strike off this list the things that your Mum can live without, and then get your husband to strike off the things he thinks you Mum can live without and then just do those things now on the list. Then make sure that you have enough time to rest and sleep and do at least one thing each day for yourself that you enjoy. I have found it isnt any good stretching yourself beyond your limit it just makes more stress and stress makes us all worse.Also maybe your mother would rather be at home with things a bit messy and often alone than in a home, maybe thats her decision.You cannot make her mind up for her but you can decide what you can and cannot do and in reality you do have pd, you are not superwoman so its not selfish its just reality?? What do you think? sunray

#4
I have power of atorney and I agree everyone should have one in place.

Because it makes me so stressed visiting I don't go more than I can help.
She is not grateful and refuses to wear her hearing aid so communication is difficult. Everything is a battle, she doesn't wash her clothes/bedclothes but getting them into the washing machine is a battle, she has a cleaner who has the same problem.

She goes to a daycare centre once a week, she refuses to go more often.

Will try to make the list- but the house is never that clean- I don't do too much.

Its the little jobs that take ages. She needed a hair cut, I found a mobile hairdresser, organised for her to go, wrote a note on the computer and took it round, told the neighbour and the hairdresser didn't turn up, so I've emailed her, no reply, so back to square one, find another mobile hairdresser.

Will try and talk to her GP.

Thanks everyone

#5
Hello Mandybike,

So pleased you are going to see your mum's GP if yours is a different one it may be useful to talk to your as well but don't give up if they are not able to help try the social worker.
I know this is a difficult area to discuss here but the rules today make it really important to have all documents in order as I am hearing of cases where people die and if an ambulance is called instead of the doctor who would certify time of death the ambulance staff have to resusitate unless a DNR form has been completed and produced when they arrive, I don't know if this applies all across the country but I have friends working in homes 50miles away from me and it applies in our area and they are finding it really upsetting, in fact one is going to retire early because of it. Once a form has been completed you usually give one to your doctor, one to the consultant and keep one at home, often the ambluance service has also been informed.
Sorry to raise this subject but both my husband and myself have done these forms but it might not suit everyone, it is a subject that is never brought up and many people are totally unaware of this rule.
I do hope you have some luck with your mum as it must be making you feel quite unwell and with the worry not doing you any good either.
my very best wishes
vivian

#6
Hello again Mandybike,

just another thought our son made a grid/card on the computer the size of a credit card so it would be easy to keep in your card wallet and on it we put all the details of my husbands name address condition doctor consultant and details of the dnr form contact phone numbers of family and friends willing to be contacted if we couldn't be, he also has donated his brain to the tissue/research bank and his number and their phone number on one side and on the reverse all his meds the dosage and frequency. We gave all the carer's a copy which they carried when taking him out, we have also given this to the nursing home, of course you need to be very strict at updating them when the drugs are changed but this is easy with the computer. Just an idea which may help anyone reading this forum.
best wishes
vivian

#7
To Vivian and Sunray
Thanks for your help.
I made the list, not much I could cross off but it was really useful when social services rang about mum and I was able to list all the things I was struggling with and why, it took me 35 mins but the social worker was very sympathetic and is arranging a home visit. Progress.

#8
Hi Manybike

Sorry to hear of your troubles , i can empathise but as others have said you need to take care of yourselves.

when the SW comes to visit what would help is if she could undertake a mental capacity assessment if she does not do that (some areas differ) make sure the GP does as due to your Mum's Dementia she may have variable capacity and it is really important for future decisions as sadly you may have to make decision for her but al least the evidence is there.

If you google advance care planning (advance directives) it will give you advice on how to move forward.

As said before so sorry to hear you are having to deal with this.

x

#9
Hello again Mandybike, Glad for a little progress there. Are you okay? Dont forget to remind that social worker that you have pd . I think also you're mum probably not aware the house is not up to your standards, can you maybe just relax a bit about that? Some things are just uncontrollable , sometimes we make our selves more stressed and ill by trying to control the uncontrollable?? Have you told this social worker you are making yourself more ill by trying to cope with this uncopable with situation? It may not be good if the social worker is able to write in their notes that there is a daughter to keep eye on mum, it maybe better if the social workers notes have to say, no one to really keep eye on because daughter has pd. Have you told sw how pd makes one unreliable because of good days and bad days? love Sunray

#10
Thanks bubble-sw is coming to do a capacity test-it is very important- without them recognising that mum cannot make decisions- I cannot make decisions for her.
2 years ago they said she was capable!!
Can anyone tell me want their criteria are.

Thanks sunray
- the sw knows I have pd and I have told her that I cannot continue caring for mum because of the effect on my health ( also the effect on my oh he has enough to cope with my dx without mum, he is much more important to me, mum has never been much of a mum to any of us and although I will make sure she is well cared for I do not feel guilty wanting to put her in a home)
- good point about emphasizing the variability of pd.
- When people see me I am having a good day and they all think I am coping fine
- when I am having a bad day/period I hibenate and no one sees me except OH
- I understand what you are saying about standards-but it doesn't apply to me-my house cleaning standards are not high-

I am being well supported by my pd nurse and Parkinson support worker.
They have persuaded me that I need to think of myself first.