Have been managing my husband’s PSP for 7 years now and watching him gradually deteriorate. At the same time managing to look after my Ma. Have been trying very hard to stay strong, but have hit a brick wall! I try to be happy and cheerful, but have increasingly seen friends disappear as they find it all too hard to handle. Family aren’t living nearby, based all over the World !! Has anyone else found it hard to ask for help? Am struggling today. Have a long way to go with this awful illness and trying hard to ensure my husband can live the best life possible. Need positive vibes.
Helen
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Toddet
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Hi Helen, I know what you mean about friends disappearing. I found that many folk who knew my husband before PSP, found it too upsetting seeing him decline. Do you get any time off? I live in the South East and Crossroads were brilliant. I had two ladies for 3 years who would come and sit with C on 2 different days each week for 4 hours. They were life savers for me as I also had my father, in his nineties living nearby. He had carers morning and evening but it was me who did shopping, washing etc until I came to my senses and got him a cleaner, gardener etc but I still had to visit daily.
Do you have a Hospice within reach? For 3 years my husband went to the day centre. He was walking, talking when I first asked our GP to refer him and he went every Friday from 10-3 pm. I joined our local U3A and went to an art class every Friday, and still do 3 years after he left me. I also joined other groups and made many new friends who didn’t know C before PSP. I would invite them round to my house and have since been on holiday with the U3A. On Friday 10 of us went to see Little Women. I met all of them during PSP. My dad died 2 years before C.
Originally C said he didn’t want anyone in, or go to the Hospice but I knew I needed a break after several years coping alone. I explained to him that I loved him dearly but couldn’t carry on as I was so if he wanted me to continue to look after him, I had to have a break during the week. He accepted it. He realised I had become a happier person and would tell him what I had done, who I’d seen and funny things said.
Does your Ma live with you? Do you have help for her? It’s hard having people come into your house but I got used to it and they were a Godsend.
About once a month/6 weeks, I would ask folk to join me at home for a takeaway. C would sit within earshot and I would include him in our conversations, even though he couldn’t respond. My guests knew I may have to leave the table during the meal, but I could hear the chatter and laughter while out of the room.
I never asked for respite time away as I didn’t need it but that may be good for you, so if you need it please ask.
We often hear all those living with PSP are individuals and different but so are we, their main carers. I know some would find it very difficult to do as I did but I have known long term carers of loved ones with Alzheimer’s, motor neurone disease etc who haven’t coped at all once their spouse/partner has died as they had become isolated in their own home as they didn’t think of themselves and wanted to cope alone, almost cutting themselves off from the outside world during the illness. I was determined that would not happen to me.
Many thanks NannaB. Really appreciate your response (has made me cry) as you have been where I am. I live in West Sussex & am trying to get hold of Crossroads & have a referral to our hospice. It is about making new friends and new connections isn’t it? I’m just not good as asking for help and have also been too busy just coping. My Ma is in Warwickshire and I have carers in for her, as have found it increasing difficult to leave my husband. Your reply really gives me a bit of strength that I am doing the right things. I am so sorry for your loss. This is such a dreadful illness! Take care & thank you 🙏 xx
Toddet, I’m in the same boat as you. I need to ask for more help. I’m going to try hard and follow NannaB’s advise. Nothing like starting a new year with new goals! I have a potential sitter to interview this weekend. Yeah!
Every single one of us has hit that brick wall at various times, during our loved ones journey. Listen to NannaB, she has given you valuable advise. The one thing I would say is, if you don't look after yourself, who is going to look after your husband and mother???? You have to be at the top of your game. That means taking lots of rest, eating properly, sleeping well and having some respite from PSP. I know, I know, all things that are impossible if you are the main carer. I crashed several times during my husband's illness. I still bear the scars now, three years after he has gone. Steve suffered so much, because I thought I could do it all, didn't want to admit that I needed help, thought it was a sign of weakness, that I had failed. BIG! BIG! mistake. That was failing him, not getting the best for him. Your job as a wife, is to love him and get the best help and support you can find, not necessarily getting down and doing it yourself. With help, the love of my family, I did manage to keep Steve at home, until he died, although he did regularly go into a Nursing home for a week's respite at a time.
Remember the aircraft warning, please put your own oxygen mask on first, before helping others. The same applies when caring, YOU have to be first in the queue, else your husband or mother have no chance!
Get on that phone now, demand help from anyone you can think of.
Asking for help is a realization that you aren't an army of carers, nurses and doctors. Getting some help will allow you to regroup and see where things are at. Caregiver burnout is a real thing and it will do you nor your husband any good if it happens.
Hugs to you, Helen. I can't add much to the good advice above, but please know that we all hit the wall at some point and we all have to ask for help, which I found very hard to do - like you. My first post here was the best thing I ever did. I couldn't have kept my sanity or taken care of my sweetheart without all the wisdom and caring I found here. I made mistakes, but never felt entirely alone once I joined this community. Hang on. Love and Peace,
You already have seen a wealth of experience in the replies above.
The best bit if advice I was given was by our former GP who, just after Chris was diagnosed, asked me what I did with my time. I explained my activities and he told me , no matter what, to keep up my activities. This has led to my mantra of keeping on keeping on!
I also recognised that physically I couldn't care for him on my own and got carers in, initially funded by us, then by CHC. My lovely girls were with us throughout and were there for me too. In the early years I too was caring for my Mother who lived 50 miles away. She was in a lovely home until she died two years ago. As soon as she had gone, Chris had a downturn and he got progressively worse. Had he been holding on, I don't know, but I know that she never knew how ill he was.
So I hope our combined experiences have helped you, but please ask for help. It is there for you.
I found it really hard asking & accepting help at first and it was the manager at the sheltered housing where Mum was, who took me to one side and said, she wasn't worried about Mum, she was worried about me & how I was coping & if I didn't cope then it would be a problem for Mum. That made me look around for support and I found our local council supported carers groups a real help. I had to try a couple to get the right fit but it has been a great help talking to people in similar situation & gaining local knowledge of what's available to help.
I also found Independent Age befriending service a huge help - this could be either for you or your husband. Mum used to get a lovely gentleman visit her weekly that gave me a break but they also do it by telephone call as well.
I found that asking friends to help isn't really an option due to the personal care that may be needed at unexpected times. It was easier to get help to give me time out was easier once Ben's condition worsened and funding was in place. I had a morning and afternoon off whilst he was left with professional carers,generally the same ones each week who got to know him and his needs. I also had a charity volunteer sitter who couldn't do personal care but it enabled me to go to bed or work in the garden knowing he was safe. Ben did three different weeks in a nursing home to give me respite, one home proved a disaster and the other was marvellous, he was due to have another week there but died the week before. I was never too good at leaving him in a home, just couldn't relax and had a great urge to visit, this may be bacause if the bad experience in what seemed a good home on the surface. I think your first experience stays with you. I did go to yoga once a week and went to see friends or shop when the professional sitters were with Ben but never went to far away just in case, it was hard to switch off when away from him but very necessary. I was lucky that most of my friends stuck with me and came around to see me /us, they were mostly female friends as the men seemed to find it more difficult and I think Ben found that more stressful. If I had a group of friends round I would ask him if he wanted us to sit with him or just within earshot so that he could here the chatter, he was usually happy to have company if just one friend came round. It's very personal in how you deal with keeping in touch with the world whist being a full time carer and you have to do what is right for you, I wasn't interested in joining organisations or entertaining at home but very happy to see my dear friends on a regular basis. Doing this job alone without social contact is a very lonely road and getting help to give you time to see people is essential for most people. I wish you well but do reach out to get help.
I agree with all the above. I now recognise that I should have found more help but at the time one is exhausted and just surviving. My saviour was the local hospice. Chris went for a counselling session but he only worried about me ! They suggested he attend there one day a week to give me a break. He enjoyed it and as he deteriorated he had a couple of respite breaks there. Finally the nurses from there gave him palliative care . They were lovely there and were like a second family for him.
Its hard but you need to organise time for yourself. It was after Chris died that I realised quite how stressful it all was.
You've gotten so much good advice already that I hesitated to add to it. One thing I didn't see though is how to get the most out of your time away. I learned pretty early on that my friends really couldn't understand my husband's illness or the demands on me and spending the precious free time I had talking about it was doing me no good. I found that when friends asked how he was doing if I just gave a brief answer and changed the subject it satisfied them and I was able to get my mind off of it for awhile too. I hope this simple approach will help you maximize your free time too. You must take care of yourself!
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