I've always been an optimistic person, looking for the positive and the joys of life. I think I've lost that person on this dreadful journey into a black hole.
F is in a nursing home temporarily, waiting for new bed/bath at home to be finished. I go to visit every day. Each 24 hours sees a further decline. I leave him and return home alone to do the admin and deal with all the things he used to. Then sit and plan what I will have to organize for his return home.. I dearly wAnt him home but know that it won't be the same. It won't be the retirement the two of us planned together. Wonderful it will be to share my days with him again I am dreading the pain, grief, tiredness and stress. The worst is that there is no alternative, I won't consider any other option other than home care. Am I a masochist?
No I'm not a masochist. I LOVE MY HUSBAND. I guess that's what it comes down to in the end , love. It's very hard but somewhere I can hold on the blessing that is my soul mate.
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hellebore
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Well said hellebore, I hope you can make a comfortable home for F. Do not give up hope love can do a lot. You are not a masocist but a loving wife who wants to care for her husband. The only things I can say is get as much help from NHS, local government, Marie Curie nursing, Carers trust crossroads, friends and family. Try to keep some outside interest, choir ,sewing something to take you out of the house. I hope you can survive but be prepared to ask for help from hospices. I pray you do not have to do what I have had to and pass care to a nursing home, but I could no longer cope without breaking down. Take care of yourself, best wishes and good luck Tim
How are you Tim, I hope Margaret has settled in her new surroundings?
My thoughts are the same as yours tonight, I just don't know how much longer I can cope with this foul illness, it's like having a giant baby to look after and I don't think I'm strong enough! Hopefully I will feel better in the morning!
Hi all I want to try and keep George home to the end if I can, we have got CHC so it makes life a bit easier, still get stressed nearly ever day, but I just feel I must try and do this for him, yes there are like big babies, but they are our babies, just want the best for him, I know a nursing home would look after him and I could visit everyday, but I promised him at the beginning, I suppose I am lucky I have a good family network, very supportive, I am in New York, feeling so sad, because he should be here with me, this is what we planned for our retirement. Hellebore I hope we can achieve our ambition to keep them at home, sending you all a big hug. Tim I hope you are keeping well and that M is ok in the nursing home xxxxx
Me too. Planning for a different type of retirement but want to keep him at home whatever that means.
The rehab/nursing home experience was awful. Not clean enough or caring enough. If it means I have to retire and sit next to him reading that's ok. I'm in it for the "long haul" like he always said to me. I'm tearing up. So long for now.
Hi Pat, I've said the same but but then thought at least but with a baby you wait see those changes as they get older, the smile, the helping by stretching out arms and legs when being dressed, the annoying turning over when changing a nappy etc. With our loved ones it is the reverse isn't it.
No you are not a masochist but don't make a promise to him that you will keep him at home as we don't know what is ahead for us. I told my husband I will keep him at home as long as I am physically able to look after him. I think I should have said emotionally as well but he is still here at the moment, thank God and the NHS.
It won't be the same when he comes home but once you get used to the new normal again, you'll soon get back into the swing.....or on the roundabout.
Yes. I think the love we have is the only thing that keeps us going sometimes. I also hope to continue caring at home. I also was always an optimist. The only way I see now is to be able to focus on the unexpected joys there are still. Georgepa is a great example of that !!
We are almost 4 years down the line now and the man I live with is not the man I loved with all my heart, my funny, intelligent, caring, sporty, interesting husband. He is a shell of himself, but on the days I can make him laugh it fills my heart, but most of the time he is in his own world.
We will care for them until there is no choice and dealing with this vile disease is a huge test for all of us.
Yes PSP has robbed us all of our hopes and dreams of the futures that we planned.
Lots of diseases do this, but what I am gaining strength from is being able to communicate with people who really do understand.
Take care of yourself, being a positive person is the best way forward.
When S is in respite, I too see the daily decline, that we don't notice at home. Also, I notice the smiles, the Carers get for doing something for him, again I don't see at home. The feeling of being safe, with two Carers doing the transferring, not one person, who is on her knees. I came to conclusion, quite a while ago, that I would not be able to keep S at home until the end, but I would keep going as long as my body and mind will let me. That acknowledgement has helped enormously, I have an escape clause. Whether I ever use it, I don't know. S now has regular respite sessions at a nursing home. I will just keep decreasing the time in between, until one day he doesn't come home.
Love is a wonderful thing, gives us all strength we didn't know was possible, but equally, it does blind us to the perils that we are putting ourselves and our loved ones in, by trying to do TOO much!!!! Wish I knew where the happy balance was!
Heady, how did you set up regular respite sessions at a nursing home? Does it have to be ordered by the doctor? My sister ask myself and our siblings to go to the US Virgin Islands in September. The hospice group said they would respite L for that week. I did not know you could set up something on a regular basis.
Hi, I am one of those lucky "B's" that has CHC funding. They have told me, that I can book respite when I need it. We have agreed every two months at the moment. That will slowly become more regular, as time and condition marches on! If you are privately funded, then talk to a local nursing home and see if they do respite weeks. The hospice should be able to advise you, or social services.
Thank you Heady. We have private insurance and Medicare Part A. We live in the U.S., so there is no CHC. I am looking into more social services now. I have been caring for my husband for 4 years without even another carer coming in. Now, I am like NannaB, I had to quit my teaching job.
Three hundred dollars a night for the respite care I can find here in Maine. The same if I have an aide spend the night at our house. So far, I manage without!
Sorry, for some reason I thought you were in the UK. Very sad that you have had to give up your job. Hope your insurance will help out with the cost of respite care, or at least some home help for you.
Well said, as usual Heady. We all love our PSP sufferers whether they are husband, wife or parent etc but loving them doesn`t always mean we can care for them at home, as much as we want to. I envy those who do manage to keep their loved ones at home to the end, but not all of us can do that.
We all suffer this horrible disease in our own way.
Heady I enjoy your posts, you make me see things in a positive way, the same with NannaB. Going home to uk today, I have come all this way to New York, what a total let down for me, I keep thinking about George, seeing things and thinking he would of enjoyed seeing all this, could not motivate myself, it brings it home to you, how things are, just want to get home. Yvonne xxxxx
Oh, what a shame, Yvonne. I felt the same when Chris was in respite. Everywhere I went I really wanted him too. BUT preferably as he was pre-PSP. I think its part of the grieving for what has been lost whilst they're still with us.
Oh well Jean we are leaving here today, I think my sister will be glad to get home we have walked so much. Nice day here today, it was raining all afternoon yesterday. Yvonne xxx
Yvonne, sorry I didn't see this post until now! How sad, to go all that way and not enjoy it. Perhaps it was a few miles too many! I have got a week booked for respite in June. My sister and I are going away, but I can't find the enthusiasm to find somewhere. I know I need to get away, I am longing for some proper sun on my back, feeling resentful, that I can't travel any more, but I want S with me! We will find somewhere, I will take heed of what you have said and keep it low key. I think that's the way to go, we both need these breaks Yvonne, so don't give up. Just need to keep them simple and girlie, something we know our husbands wouldn't necessarily would have wanted to do.
Yes Heady I think you are right, these breaks are good for all of us, I think it was to far, I said to my sister we should of gone to somewhere closer, heady hope you have a lovely time when you go away. Yvonne cxxx
Thanks! Don't beat yourself up, even though you might not have enjoyed the trip as much as you had hoped, it was a break. Made you miss and want to be back with George. That will keep you going for a bit longer. Every day we get through is a bonus!
Thank you Heady, I agree with what you are say, you do feel better after a break, but I feel so guilty, going and leaving him, when we had these big dreams of doing all this together, I just can't kick out this feeling that I have got that something horrible is going to happen, it is making me feel so stressed. Sending you a big hug. Yvonne x
Hey HB, all I can say is what Tim (AMILAZY) said. Think of it as a new normal. Don't worry about what would have been ...a lovely retirement etc.....think about it as the way it is.... let go of the anger and hurt and when you need to feel angry and hurt , that's what we're here for...you know that! I say all this knowing im gonna get mad or start crying any moment...but I do know that I should do and when I do do it I do feel happy. I rely on spiritual strength and I know that when it is time for B to go he will go to heaven....I cannot tell you how much that relieves me....doesn't help me do the finances but it comforts me to no end that my husbands end will be so much better than his present.....and when it's my time, I pray daily toward that same goal.
Find comfort in things other than your husband to do, like Tim said music sewing whatever interests you. But find comfort also in God. Pray for that comfort and confidence that this thing we are doing now is only for a moment and soon is a greater goal.
Thank you, thank you all. Something in each reply gives strength and understanding. I hold on to love as the guide for starting each day. It could sound sentimental and sloppy to anyone who has not experienced the trials of a family carer. There is a powerful inner strength in all of you and as long as we share a little that new normal we all talk about can be easier to live with. Thank you all.
I totally understand. It is so heartbreaking, my beautiful husband died in my arms on sept 30, 2015. Everyone was telling me it would be "easier" in a rest home. But we had agreed that we would maintain out "unit" to the end. And that is what we did. He was very large, tall, and I am not, so I had to think things out for both of our safety's. He is the love of my life. I am alone now, with our PUPKIDS, and there is not a day I don't think about him and KNOW we made the right decision. He is still my prince.
So pleased I found this exchange! I got my man into hospital because I could see it would soon be too difficult for me to care for him at home - whether with other carers or whatever additional aids. When I see how he has deteriorated in a month, I know I did the right thing. But can't help feeling guilty! Especially when he asks when he can go home, or how is he going to get home if I leave him there! I know it will be hard to settle him into the nursing home, and I can only trust that the ambience of the place and the caring I sensed will be there for him too.
It seems a 'no-brainer' that this is the right thing to do, given the accumulation of hoists, toileting and bathing aids he now needs. Wish the paper pushers would get their act together and make it happen before he is unable to enjoy the big sunny room he will have!
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Loss of Hope
PSP Story With A Touch Of Humor #2
