Hi, this is my first time posting although I have been reading everyone's posts for weeks. Somehow it feels more real now I am writing about it! My husband was diagnosed with Alzheimer's in Dec 2021 at the age of 60. Over the last year other symptom's started to present, slow blinking, choking when swallowing, tiring quickly especially whilst walking leading to stumbles and falling backwards, his speech and balance became worse so we were referred to Neurological at Salford Hospital and he was diagnosed with PSP in April this year. Like everyone else dealing with a horrible diagnosis it is life changing, heart breaking, stressful, frustrating......the list could go on and on.....We are lucky to have close families and friends. We have a fantastic team from Oldham memory clinic who come to us for speech therapy and to check his swallowing. They are a huge support to me too. We have a physio coming weekly, have had grab bars and a bed frame fitted to help him turn in the night. We are only waiting for O.T to advise on which stairlift to have fitted then all should be done. I still work full time, but can work from home which is good. So...why do I feel so alone and isolated? I feel so guilty for having these thoughts when I read about people who are struggling to get help and are alone dealing this. I should be feeling lucky to have such good support. I feel selfish that our lives as two active outgoing people has changed so much....I just want my husband back! On a little more positive note, this has given me the push to start driving again as my husband stopped driving independently before the diagnosis as he wasn't feeling safe. As difficult as it is to give up your independence I would advise anyone with PSP not to drive, it only takes a second for the eyes to blink slow which could result in an accident. Take care everyone and my heart goes out to each and everyone of you x
Life Changing: Hi, this is my first time... - PSP Association
Life Changing
You will always find other people worse off than you, but that doesnt mean your feelings are not real. Its a great forum for sharing experiences and just writing whats happening which helps vent if nothing more. Great you have lots of support, and just consider this community another support network.
Thank you, I agree once I had written the post I felt better for it. This site is a fabulous support. Take care.
Hi!
There is nothing wrong with wishing things were different and finding it difficult even if you are getting help.
My Mum is getting lots of things she should and is entitled too, I want to help her as much as I can but today I came home is tears as all I can see is my Mum disappearing in front of my eyes, less communication, losing weight and abilities to do anything. Which I wish I could stop or have the independent Mum I used to have.
I also feel anger at anyone who does anything that’s isn’t 100% considered with Mums condition. The carer turned up a few minutes early to take Mum to lunch, mum was smoking on the patio and she wrote in the notes, in future I won’t wait for her to finish her cigarette to take her to lunch because Mum said to her she was early. Firstly I am angry because the carer stated she was three minutes early, so yes she should be prepared to wait, it’s not mums fault she turned up early, secondly Mum PSP and CBD means it takes Mum a lot of effort and time to move, communicate etc so for her to be confrontational is highly unlikely. Fortunately Mum doesn’t read the book but I wonder sometimes if my anger towards things like this is just my anger at the illness coming out and I’m just being sensitive but I guess it has to come out somewhere?
I just wish like you for the life that should have been without these illnesses. Let the feelings out, especially somewhere like here as everyone understands.
Xx
Thank you. It is heart breaking when the person you love starts to disappear. Your Mum's carer obviously does not understand the conditions of her diagnosis, could you speak to her carer and explain what it entails? You have enough to deal with and hopefully the carer will be more understanding in future. Take care and keep strong x
Hi Old_Hall, so sorry to hear you have so much to deal with. I put in a stsirlift for my wife (PSP) but had to stop using it when two carers were unable to transfer her from the wheelchair to the stairlift and vice versa. We exchanged our bedroom for the lounge so all on ground floor, converting our downstairs shower cabinet & toilet into a wet room. Not every house lends itself to having everything on the ground floor, but stairlifts are not always the answer for those with PSP or CBD long term. 🙏
I agree. We were advised not to have a stairlift for a variety of reasons and we were able to change our downstairs to accommodate a wetroom. It’s also the space you need to accommodate wheelchairs etc. that has surprised me.
Thank you, this is what worries me as we are in a first floor flat so we need OT to access us as soon as possible. We will be self funding so need to get it right. We don't want to move, we love our home and I think it would be too much upheaval for David as he is less agitated in familiar surroundings. I suppose we have to just face each day as it comes and not think too far into the future which fills me with dread. Thank you for the information and hopefully OT will visit soon. Take care.
I hear you, so much to come to terms with. I found it difficult that my life had changed so much, our life together has changed so much, the plans for our retirement are not recognisable. Working through the grief process now as we have lost so much. How people treat me is also different and I don’t have the condition. I’m not seen as ‘me’ I’m a carer now, am ‘protected’ as I have so much on my plate, it is with good intentions but I’m not included in things which makes me feel isolated and excluded. I have spoken with my family about things and this has now improved a bit. With something like this the whole family are affected. Then I feel guilty that I’m concerned about myself when I see what my husband has to experience and how his life is changed so dramatically. It is tiring have to think and organise your life and theirs, make decisions on your own for example. People have said take care of yourself ask for help but that is also a learning curve! There are so many adjustments to make.
He was always the one to drive and now I have to do this. Some distances and destinations are just that little bit too far and our daughters are helpful with this thankfully! I even drive a largish WAV now.
I’m glad you have some good services around you. The PSPA Carers monthly Zoom group is an excellent source of information and support and I’ve made some good friends through this. They are people that understand and you can have a laugh over the little things knowing they understand and are not judging you.
There are some good times that you can share, things to laugh about and as I said before, a lot of adjustments to make. Take care.
Thank you, I did find it hard at first to ask for help. Our families and friends didn't really know how to react at first but we have been very lucky in the fact that once everyone got their heads round they all got together and set up a wonderful support network for us. The changes are draining and mind blowing. I still work full time, I feel it is the only thing of me I have left. I certainly will look into the monthly zoom group and I agree it's good to have a laugh. David still has a good sense of humour so we make sure we laugh everyday. Well done with driving the WAV! Take care x
welcome to the group. Sorry about your husband’s diagnosis. Yes you’re lucky to good friends and family around you. We also have family around which is good. My husband has very limited speech so the friends he has don’t come round to see him I think they are embarrassed. I tell them he can still understand their chat. We have very good local NHS services here to it makes a difference as you do.💜
Thank you, it is sad your husbands friends don't see him. I can understand some people don't know how to deal with things especially men, but hopefully they will call and I'm sure it would be lovely for your husband. David doesn't socialise as much as he is embarrassed about his speech, luckily most of his friends still visit him and he's happy to listen. Take care x
Hi Old_Hall, you are not in the best of places being in a first floor flat. I entirely agree with you though, that David should be kept in familiar surroundings. A stair lift, hopefully a straight one, which will be the cheapest (we bought a secondhand one), will be essential to take David out for appointments etc etc. How long it will be in use depends on his mobility. With the support I gather you can call on, outwith carers times,, you should manage quite well. All my very best wishes.
Thank you David750.......Luckily it is a straight staircase with no turns. I just want safety for David and hopefully it will be helpful for him for a long time. I have 3 numbers to ring for quotes as soon as OT confirm which type to order. I dread the day I wont be able to cope and care for him. Each day at a time. take care x
I have been through it Old_Hall, thinking of you. You are well organised under the circumstances, my compliments. Take all the assistance you can get. All my very best wishes
Thank you David 750 so glad I reached out to you all. It is comforting when people say I am organised etc even though I don't feel like I am! Been a bad few days and I need to snap out of these dark thoughts. One of David's friends who has been a carer for someone with Alzheimer's has just taken him out for breakfast. So, knowing he is in safe hands should I do yoga or just flake out on the sofa?😅
so sorry about your husband’s diagnosis but you are among friends we are here for you at any time to help & support you take care I have CBD diagnosed early this year xx
Thank you, and I am sorry to hear of your diagnosis. I hope you feel you are among friends too xx
Hi Old Hall,
I've been mulling over the same thing: why does PSP feel so weird to think about? My theory lately is that it's because PSP doesn't have place in the cultural awareness, like say, cancer--where everyone immediately has a sense of what the named stages mean. My husband is about your husband's age and we're still working, and it just feels so weird to be constantly adapting and figuring out what's safe and smart. Commiserating with you!
Lost
Hi, I absolutely agree, as everyone progresses at different rates it is so difficult to compare with others. I keep a diary about my husbands daily mood, symptoms etc as last week for the first time he lashed out in a fit of temper and frustration. I had lost my patience a little and I didn't realise the effect this would have on him. For someone who I haven't even heard raise their voice in the past to shouting and screaming and grabbing me was shocking and terrifying. If I have learned anything from this incident is that not matter how tough things become I have to stay calm around him and vent somewhere away from him. I do hope your husband can carry on working for as long as possible, keeping as much independence is so important as long as he is safe to do so. Keep strong and make sure you look after yourself too.
Welcome to this group of supportive and understanding folks... (wish you did not need to be here). You are not alone in your feelings and thoughts... I believe we have all had similar experiences. Sending Hugs... Granni B
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