Reading your post tugs at my heart. I read somewhere that one of the common traits of these brain degenerative diseases is a lack of empathy. I have seen my caring husband of 55 years relate to me as if I was hired help. He has absolutely no interest in me or anything about me. I have been lost in his eyes for seven months now and he has no memory of our life together. He is nice at times when he needs something. The other times he is quiet and sullen. I want you to know you are not alone and at times I am ashamed of the vulgar words I use. I am lonely and sad most days and the really hard stuff is up the road yet.
Hi Noteasyrc don't beat yourself up, with getting upset, with your partner we have all been there. Yes they have no empathy, that is one of the worse thing with PSP, it hurts when they don't show any sympathy when something happens, our the children come around, worse when the grandchildren are there. A few weeks ago though our daughter came around and she has had a few problems, and he was cuddling her, and he told the doctor at the hospital he was worried about her, so there is still something there, but this horrible illness is a £&@@@@ xxxx
I had an argument with my mother last week and ended up walking out. She couldn't grasp why I was so upset and didn't apologize. My sister came and spoke with her and she blamed me, she told my sister that she no longer wanted me in her house and was quite nasty with it. I went back to speak with her and she seems to think I'm at her beck n call shouldn't have a life. Why do I have family and friends visiting my house. If I go anywhere she wants to know what time I will be back.it seems as tho my life has ended.we had a family meeting so that my two sisters would give me two nights off so I could spend time may family, she still insists that she phone me instead of one of my sisters her answer to this is ..Why should I bother them your only two minutes away. Doesn't help when I get called through the night to see to her and work full-time....Sorry my rant is now over .....onwards and upwards it's a new day see what that brings.
Hi York, oh how I feel for you. I could have written what you said a few years ago when my mum was still alive. She didn't have PSP though, she was a few years into Altzheimers. You can't keep going to her in the middle of the night....I did and it was killing me emotionally and physically. OK, a slight exaggeration but it didn't do me any good as I was also working full time. I didn't have any siblings living very close. If I did I would have turned my phone off on the two nights they were taking over. Is it time for her to move into residential care? My mum had my dad with her and it was he who would ring me in the night but if she were on her own I know she would have been scared as she hated being alone.
Please don't let your mum rule your life. Mine did and if my husband wasn't the lovely man he is/was, I don't think our marriage would have lasted. It's awful to say, but when she eventually died at 90 (15 years of Altzheimers) all I felt was relief. No sadness that she had gone but a feeling of all those years when I could have been living my life, instead of hers.
Hi nanas thank you for reply and I think we all get frustrated and angry from time to time. You forgive but don't forget and don't want to start resenting my mother. I am on holiday in five weeks going on a cruise for two weeks were I cannot be contacted and it will be quality time for me and my family. And when I come back I shall start all over againx
I can sympathise too York. I provide all my mums care (apart from night care as of a few months ago) and mum never seems to show any appreciation of the sacrifices I made for her by putting my life on hold. And more annoyingly my elder sister lives a few minutes away and sees my mum once a fortnight if that. She does nothing to help with my mum at all. And neither do my two brothers who at least live much further away. Enjoy your break, you deserve it. And nannaB's line 'I could have been living my life instead of hers' really resonates with me as that's exactly how I feel! Tbh I so admire NannaBs strength snd courage in being such a long serving patient carer but for me ... I've reached my limit and don't have that same strength. With hindsight I wish I'd let carers come in for my mum from the beginning (I moved back from Australia to care for mum) and I'd kept the role of daughter instead. Best wishes xx
Hi, I agree with NannaB. If your Mum is living alone with PSP, then she needs to be in a home. That is where she will end up, so why not sooner than later. My Mum was put into a home last year, she's got Alzheimer's. It's the best thing my sister and I have EVER done. She is so happy now, the happiest we have ever seen in our lives!!! It is not the end of the world. S goes to one, regularly now for respite. It's lovely, the staff care, joke and laugh with him, get him to communicate. All things I can't do. He has two people to do every task, not one who is on her knees! How you are coping, with a family, no sleep and work full time? Well I suppose it's simple, you are not and are ready to crash! What happens to your family then? What happens to your job? Who will step into your shoes to look after your Mum? Whilst caring for a loved one, the most important person's well being, is the main Carer!!! Start looking after her and your Mum will be fine!
Thanks Heady my mother is adamant that she doesn't want to go into a home and my sister and I have asked if she would like to try just a night respite but no is the answer. I can understand her reason behind this as our brother lives in the same house and has cerebral palsy
It is difficult isn't it? Ben also doesn't always empathise and then sometimes surprises me by being quite a caring and tender. It is one of the saddest symptoms of this horrible disease. It's a hard pill to swallow being viewed as a carer and not a wife. This morning Ben switched the radio on at 5.30 this morning when I was fast asleep, he would never have done that before. I know it sounds petty but just an example of the way he doesn't consider me in this equation, all based on his needs. I realise he can't help what is happening to him but it is hurtful. Oh well just have to get on with it and try to make the best of an terrible situation. xx
I pray for patience daily Noteasyrc. We need a lot of it. My husband had never lost empathy or said a cross word to me so it doesn't effect all those living with PSP but it must be very hard for carers when it does. PSP doesn't always take away the memory but does take the ability to verbalise what is going on inside. One day, a couple of years ago, I asked my husband why he didn't answer me when I spoke to him and he said, "I did inside". When he lost his ability to speak I asked him if he was answering me inside and his thumb went up. He doesn't show interest in you but don't stop talking to him about what you are doing, who you have seen, relating conversations etc. If you had a good relationship before PSP he is probably depressed, frustrated and in despair knowing that to you he is not the man he used to be, but to him, he is. If he needs something, he asks for it but he won't be able to enter into lengthy conversations. His eyes are probably fixed and blank, part of the physical symptoms, not of what he feels. You may have read that my husband can't do anything now but on Tuesday I told our carer that our dog had died that date, 6 years ago. With a fixed expression, eyes staring at the ceiling, a tear came from my darlings eyes. The carer had to go and get a tissue and I gave my darling a hug.
Exactly Bev , we are used to reading someone's face we do it all the time without realising it .
With these awful illnesses you are not able to . What's the saying don't judge the book by its cover .
If they are not able to show any thanks for all the help /support you are giving while on your knees and tired maybe in pain yourself It can be hard not to feel fed up .
I have told John I don't think it would matter now who was seeing to you , although he struggles to get any words out he quickly said 'don't be so silly '
Even in the beginning he wouodnt answer me itS so frustrating isn't it .
He told me he had answered me inside.
When he was more able if I asked him a question and I complained he hadn't answered me . He told me it's a rhetorical question , doesn't need an answer. Lol .
Yes Cabbagecottage, we just get used to it. The new normal as you have stated before. I think just getting used to it has helped me emotionally as nothing is as bad when you just get used to it. I've got used to the fact that I can't just get up and go when invited out at short notice. Last night I went to the local pub for the ukulele jam night. A friend of 35 years was there and she said she was really angry and upset; her husband recently developed serious heart problems. He can be left for a couple of hours and the pub we were in is at the corner of her short road but yesterday someone asked her if she would be able to accompany them to London for the day as she'd won tickets to a posh meal to celebrate the Queens Birthday. She was nearly in tears and said she resents the fact her life isn't her own any more. She wants to go and is cross with her husband for being ill. She knows it is irrational, it's not his fault, but she said it is effecting the way she thinks about him.
I thank God I don't feel like that and I can get out if I'm given plenty of notice. If I couldn't I may feel different.
Oh, NannaB, how moving! Your story has brought tears to my eyes too. It is a timely reminder that our loved ones are still there, shrouded by this terrible disease. God bless you both. X
Nanna, we're beginning the slippery slope. He uses thumbs up and two fingers for no. Sometimes he'll laugh out of the blue and smile a little. Other times nothing. The only time he (we) are normal is in the car. He loves looking out the window and listening to the music. We do it every Saturday but the days are looming ahead and I try to remain positive. Boy is that hard.
It certainly is. We still go out but it is physically difficult getting him in the car now. It takes me nearly an hour from bed/chair to car but for both of us, it's well worth the effort.
Yes, it is not a thing to look forward to is it? You must be finding it so very hard to have already lost your loved one in most senses of the word. Sending you a very big hug and a prayer for you to have strength and fortitude. X
My husband has been gone now for almost two years and I don't always read this site very much any more. I had to respond to your post however as it brought back so many memories going through this disease with him. I think what you have described about your husband strikes such a cord for me as I think back. My husband was very loving and caring and we had such a good time together with lots of laughter. When PSP struck, his personality changed. It was so hard to accept until I knew what was wrong. That took several years before we had a true diagnosis. I understand all the bewildering feelings and loneliness you are experiencing. In a way you are grieving the man you once knew now even though he is still here. I used to pray for understanding and compassion in my frustrations and I really do believe God granted that to me. As time passed I was able to accept the changes and find a different kind of relationship with my dear husband. I look back and realize how brave he was and he did the best he could to cope with slight dementia, pain, loss of his healthy happy life. I feel for you all as you battle these horrible diseases with your loved ones. God will give you the strength and comfort you need--just ask. Mary
Thank you Springm for being so generous and sharing your experience with us. You have walked the walk and know the score, were are still walking. If it is not too painful, do keep in touch as you know things that some of is have yet to learn. Best wishes. X
All so true. My husband varies in how much he can communicate. Never very much , of course, but he can still tell me how much he loves me and cares. I hang on to these times, as I know they will stop. It hurts me that the man I knew will not be remembered or not known by those who meet him now.
He is never angry back to me. I get frustrated with him[ or with PSP!] and feel quite ashamed of my responses. But he often seems remote or indifferent. That hurts. Like others he says he answered inside. He was a very interactive person, lively and interested. Its so hard feeling I've lost that man. It must be so hard for him too !!
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I love you Dad
Every exhale is a moan.
Really struggling
