So v sad

Hello again - Don went into the Care Home this afternoon after being in hospital for a month - he so needed to get out of there, the euphoria of that bit of news last Friday wore off pretty quickly when we got to the care home. Obviously full of demented elderly people - at 68 years old and a PSP sufferer, Don falls into neither category. He was totally focussed on tea and supper, especially the cake and says he will fit in nicely! Meanwhile I have not been able to stop crying - it was not meant to end like this 😢 Our 17 year old son said to me "Mum you can do nothing about yesteryear/day, it has passed. Dad is safe and v soon will know or understand even less than he does now". Out of the mouth of babes right? Of course I realise that I am on the grief curve going back and forth with the daily change of PSP symptoms. Don looks pitiful in his crash hat provided by the hospital and his lopsided smile ... I need a few days to recover from this episode before I can come back up fighting for the next stage, whatever that is going to be 😢

35 Replies

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  • Oh I know exactly what you're saying, I've just broken down into tears myself, I do it every day, Keith is in his 8th week of being in a care home surrounded by much older people and it's not getting any easier for me, only worse! I miss him so much and feel like I've been grieving for at least two years, it's not what we hoped for in our later years is it, that on top of the feeling of guilt for letting him down is slowly destroying me. I've never ever been without him by my side and I hate it!

    All I want to do is take him in my arms and bring him back home but deep down I know I couldn't have carried on any longer, I wish I had a magic wand to take all of this away, I'm sorry for going on about myself, I truly feel for you and wish I had something more positive to say to you...,

    Sending you my love and a big hug....Pat xx

  • Oh dear you are both strong lovely ladies, both your husbands are being well looked after, you are both there for them, and they know that, they are safe, this PSP is a hateful disease, takes everything away, all our dreams for the future PSP has taken them away, and destroyed our retirement years. Love to you both xxxxx Yvonne big hugs coming your way xxxxx

  • Dear Patriciapmr,

    Yes I feel like I've been grieving and then will again when Charles dies. We don't ever get a break, do we?

    And the guilt, anger, etc. No magic anything, just knowledge that the end is coming and soon.

    Hugs,

    Cuttercat

  • Oh please don't feel that you let him down. It gets to the point where you can't do it on your own. You are still taking care of him and making sure he is cared for even though it's not the ideal situation. It's hard for everyone when it comes to that point. It's horrible to be in that position. Just love him and be there as much as you can. But also take care of yourself so that you can be there for him. Take care and hugs to you.

  • It just is so sad seeing a loved one decline and be unable to help. The feeling of grief and helplessness is overwhelming.

    We can only hang in there.

    You are not alone.

    Love from Jean x

  • My husband sits at home with me . and I am glad but he is 56 and we have nothing to do.....I ebb and flow in misery.....and the less I do the less I do......I so want soemoen here just for proximity control....you know....if someone is near you , you tend straighten up....slow down when you see a cop....kids start working when teacher walks by etc....so if someone were here, I would exercise at home with him ; find things for him to do outside the home....but i find I am so full of malaise ...I don't know what this has to do with your comments but please know in that your not alone in your feelings, no matter how they are created...It may be a good thing that he has a hospital focused on caring for patients who need modified cognitive exercises. Your husband may not need these, but at least he has something to do !

    Give your son a hug and read your husband the newspaper.....(One activity I still do 'with ' my husband)

    AVB

  • Really sorry to hear you so down, Mrs. B, but no wonder. 56 is no great age at all. Have you exhausted all options for home-based services? Church visitors? You do need to get out for a bit! I'm worried about you! Love, ec

  • It's more an acknowledgement than it is a chronic depression.....don't worry about me ec, I'm ok. And we did have Speech come by yesterday....she gave us some good exercises to do which we did today. He has lost the ability to use bilabial-produced sounds...those which use top and bottom lips together...m, b,p etc. and his jaw wont open more than 3/4 of a mans knuckle...as this one of the exercises....to get up to 2 knuckles !

    My son offered to take care of him if I wanted to go out weekly....I said no, but if I take a college class, I might have to say "yah thanks"...if only he I wasn't taking up so much time...never mind it's good I'll have to consider his offer for a while ;)

    EC I hope you are doing well.....How's ME...is it cold or sort of warm like the rest of us have been? We had *70 almost *80 degree weather the week before Thanksgiving.....and now *64 a week before December! hahahah I was wearing shorts last week......oh well...

    Thanks for the concern

    ((HUGS))

    AVB

  • My goodness! Say yes to your son! Say yes thanks to any offer at all!! Why not? Maybe your son would be glad later to know that he was helpful. My guy's son said, after he fixed the garden cart and wired the stereo this past weekend, that it was a milestone in his life, to do something for his father, since his father had always been able to do anything that needed to be done. He was happy, and wants me to come up with a list of chores for his next visit.

    I just talked to someone from "Legacy Corps," which is an offshoot of AmeriCorps specifically organized to get volunteers trained to give respite to family members of disabled veterans, and some others under specific guidelines. She is going to send me some forms to apply for up to 10 hours a week of help. The idea that I might have a few hours on my own is rather thrilling. We will have to see how that goes.

    We have icy rain today, very slippery! I don't envy you your heat, though. Winter is supposed to be cold!

    Love, Ec

  • Dear ec and Heady, Thank you for your lovely comments on saying yes to my son....Let me please make sure ya'll understand that he, his wife and their foster son come over almost every Sunday after church to "hang out" They are a wonderful family...It is I who need to change...Oddly enough It's easier for me to tell others to say yes to those who extend a hand than it is for me to accept the same.....

    And both of you hit on something that I have not considered with MY son/children. That they have had only a few adult years with dad . I mean they had their college years, but post college was when dad started dwindling....At my first sons wedding, B had to use a walker...I doubt that he'll be around for my other two kids wedding and most certainly no grand kids (except the foster boy, praise God for him!). So I am going to have to really think about their needs and, well, responsibilities...Please tell me how I talk to my kids (especially my daughter) about this....they have so much more going on in their life .....

    Thank you again my sisters PSP

    with much love,

    AVB

  • Oh and I meant to tell you My kids ages are 29, 28, 26....and believe it or not, I was on the pill with all 3...so I stopped! I never got pregnant again! hahahha

    AVB

    ;)

  • Seems they were meant to be!

  • Amen!

  • Can you take off on Sunday, then? Just take a drive, sit in the car or a coffee shop with a book? Go to a museum? Go to the gym?Maybe even go to a movie with the foster son? Or a walk with daughter in law? (If you want to spend time with them, or to let your son focus on his father.)

    Even if the kids are busy now, this situation isn't going to go on indefinitely, so maybe they should be given the chance to step up, help, make a few memories while they can. Let them be the good adults you raised them to be. And you can take a deep breath and get some of your strength back.

    My two cents, that's all. Bottom line: Take care of yourself!

  • Thank you so much ec. I need the admonishment. You know I actually was thinking about the movies with the young one...Maybe a Christmas theme in which the gifts center around doing something with him.....like art classes for the family....music lessons for he and foster dad ....movies for me and Boy (my nickname for him) ....

    You're a great gal!

    AVB

  • I agree with EC. You must say yes! For your son's sake as much as yours. It's not only us spouses that have lost out on our loved ones, older age, but so have the kids. I don't know how old your son is, but the age the B is, I doubt if Father and son have had much time being grown ups together. Although my father died at 72, same age as S, I did get to know him as a man, not just as a Father. Some thing I will treasure.

    So ring him, tell him he is on, even if you have a spend a few hours going around the supermarket, the college class sounds more fun though. Let them have some Man time.

    Lots of love

    Heady

  • Thank you Heady...Please read comment under ec's name right above this post it gives you a little more insight....and certainly shows you how much I need ya'll!

    Love,

    AVB

  • I know how you feel my hubby is 53 xx

  • Dear CP, I do know how you feel, how your heart is wrenched by the helplessness and grief. I wish I could say amen to your son's sad but wise words. You mustn't feel guilty. Peace, ec

  • Nothing to say - other then you are not alone in your heartbreak & We're all there with you. Hang on tightly to that young man of yours - he sounds like a gem! xx

  • We can ask empathise with your pain, it really is gut wrenching. Watching a loved one deteriorate slowly is tragic to watch. I think we have all broken down many, many times and then picked ourselves up and fight another day. Life fortunately or unfortunately goes on, it doesn't stop for anyone. Try and stay strong if not for yourself then for your son's sake, he is very young to go through this. Xx

  • So sorry you are feeling down. Did you get my PM? Do contact me if you would like to meet.

    Vicki x

  • Your son is wise in his words but you are starting a long bereavement. M has been in her nursing home for nearly 8 months she is 66 while the average is 80+. The home separates stroke and neurological patients from the dementia and Parkinson's patients so M is not disturbed. The care and nursing is excellent. I am welcomed daily with smiles and a short chat update from the staff and then I help by feeding M (she is PEG fed) and keep her company while the others are taken to the dining room, and if the weather OK take her for walks. She took about 8 weeks to accept the change but was happy until the latest decline. She is more confused in her Y/N indications and much slower, but still responds with smiles or laughs to comedy programmes and DVD's, though I do not think she knows who are round her.

    It took time for me to accept I would not be able to look after her again at home but bringing her home for family parties so our grandchildren can run round her is great and gives me doses of reality transferring her, cleaning her and changing pads on my own is no longer easy or safe.

    You will feel guilt and longing for his return but you must accept that he is safe and cared for and that you are able to regain your health and sleep pattern though it will take time.

    Hope he recovers some strength and stabilises. Best wishes to you Tim

  • It's hard for me to realize that it has been 8 months since you made that difficult but necessary decision, Tim. It is good to hear how well M is being cared for, and how pleasant the staff. I hope you are taking good care of yourself, too. Peace, ec

  • Yes I understand completely !... so very sad . Yes I think we all grieve with this disease watching out loved ones deteriate before our eyes. I know what you mean with the care homes too as we have the same problem with mum . She looked so out of place there when we went to visit and see for possible respite. I am honestly thinking of you and your son and send you my love . One day at a time ... xxx

  • Big hug xx

  • Hi, I feel your pain. S goes regularly to a nursing home for a weeks respite. The biggest shock for me, was seeing him with all these elderly people, a lot in their 90's and at 71, he didn't look out of place.

    I know you feel guilty that you couldn't cope any longer. Now though, you can get back to your proper job, the one that been woefully neglected, during your caring days. Being Don's wife! All of us get bogged down with doing all the things we have to do, getting tired, upset. That's all gone, it's time to just sit, hold his hand, read to him, watch TV, anything that doesn't involve the unpleasant things in life. Anybody can do those, it's what the staff are paid to do. Only YOU can love him, like a wife should. Use this time to do that, don't waste it, feeling guilty!

    Lots of love

    Heady

  • Oh my, I understand, I'm tearing up now thinking about you and all of us. Please hang in there. My mornings are awful, full of tears and then by afternoon I get my spine back to fight again.

    So sad, so v sad.

    Love,

    Cuttercat

  • I know how it feels. Although my dad is 80 it was traumatic when he went into a home. He was in an area with a lot of people that didn't even know they even exist. It was a horrible experience and on a holiday weekend when they were short staffed. After a few days we were able to get him moved to the area where they care for Parkinson's patience. He still hates it but it's better. He won't be satisfied unless he can be at home but that's just not possible. Hang in there. About all you can do is make sure he has stuff from home and know that he is loved.

  • I am so sorry for what you went through, it seems that most homes do not understand PSP or anything realted to it. Don sounds like an incredible fighter. I hear your pain, we are in the same boat as no one understands what is going on.

    We have to educate their 'new' carers, they may never be able to do what was being done at home, no on will. We have to think of the safety of our loved ones, as well as our well being. It is of no use for us to be sick with worry or guilt, I think that the daily visits, which last ALL DAY are never going to end, the caring and love never end. But with a little help, we will all be better.

    Wishing you better days ahead

  • Dear Cp

    Your husband appears to have a wonderfully positive attitude to his situation, a very courageous man, who clearly doesn't wish to add to your concerns for him. You mention the next stage and whilst not wishing to jump the gun, and only when you feel up to it, it may be a good time to research nursing homes and learn what you can about applying for CHC funding. There is plenty of good, up to date, advice on this site in regard to the battle for funding, the search box may help with locating it.

    It's good to learn you achieved your first objective; taking one day at a time seems the only way with PSP.

    Very best wishes,

    Jerry

  • Oh dear Cp. So sad. Your husband is same age ish as mine though hes still at home with me but even so a very lonely time. Take care of yourself and your dear son and keep your spirits up so you can be full of vim and vigour when you visit your hubby. All the best. Marie

  • Someone here said that you must get on doing the more pleasant parts of your husband's life, holding hand reading, watching tv....and if I may be so bold. raising your son :) Remember to do things with him dont' focus on the illness ....At 17, he's probably pretty independent....but i'm sure theres a couple things y'all can do.... a movie at home, cooking dinner together something...obviously sitting and talking is already an ok thing so remember to spend a few minutes each PSP free!

    Cp, As I have heard, and experienced myself we all are on that grief and guilt curve...just don't stay there! I especially liked what Tim (AMILAZY) said,"...you must accept that he is safe and cared for..." It can be done knowing and even feeling good that where he is now is the best place for all of you....

    God Bless you and yours

    AVB

  • Oh my goodness what a dilemma but I'm sure you have done the right thing and that Don will settle in ok. I know it's not ideal but when you also have a teenage son still at home who also needs you and isn't old enough to get through life without your love and support. He sounds a caring young man and I'm sure you will help each other through this journey. There is no easy way to deal with what PSP and its consequences throw at us and all we can do is what we feel is the best or only way.

    Please take care of yourself and try not to feel guilty, you are doing your very best to make sure for Don and your son.

    Love and hugs

    Kate

  • know the feeling Les has been in a home since Sept. Its like greaving be strong it will get better and you can go back to being a wife.I missed him so much after 52 years it was heartbreaking.You can only do so much. My thoughts are with you.xx

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