THEY HAVE DETERMINED THAT I AM NOT CAPABLE OF CARING FOR HIM ANYMORE AND HE WILL NEVER COME HOME AGAIN.
THEY TOLD ME HE WILL NEVER COME HOME HOME ... - PSP Association
THEY TOLD ME HE WILL NEVER COME HOME HOME AGAIN
Written by
Auddonz
To view profiles and participate in discussions please or .
71 Replies
•
Audrey, It's ok. take a deep breath and know he is going to be ok and so are you.....I know it's hard honey, I am sorry. You are in my thoughts and prayers.....it's gonna be ok
((HUGS))
AVB
Are you able to get live in help at home so that he can come home? Costs may compare. It actually was cheaper for us. I was unable to care for my husband by myself but with a 24/7 at home to help me he was able to be at home. Then again embrace if you can the time you may have to yourself at home to rest.
Outside Chicago
I used to live in Valparaiso In...We had so many people working in Chicago , we declared our time with Illinoise (central) rather than Indiana (Eastern)! But you already knew that.....i always thought that was rather fascinating.....(I'm boring, i know)
We have vacationed every other year at Shafer lake in Monticello ! Time changed on vacation ! Thanks for your help to everyone on this site!!!
My husband's people were from Michigan so we vacationed on Silver Lake ....Sand dunes galore!
Very sweet! Where are you now again?
We now live in NW Arkansas....Fayetteville...
As far as 24/7
We had good luck with the polish communities here. They were really competent and compassionate. As well as more reasonable Perhaps your social worker could help. However if you are adjusting to your situation now keep with it. More restful for you and your guy is fine.
Kylie4951, 24/7 at home is over $3,000 a week. I wish with all of my heart and soul I could but can't.
You know take heart. It is what it is and you do what you can!!
YOU ARE DOING GREAT by the way!
Not knowing what to say at this point but I know as all the caregive of a love one with PSP the struggles that we have gone through and continue to go through you have no dought have given all you are able to give.Its ok to let someone else take over.. At least that's what my family tells me .. Hard to let go..
Stay strong
Dee in BC
I know how you feel, but you wouldn't have been caring for him properly if you hadn't taken him to the hospice, I'm sure they will take good care of him
Love
Debbie xxxx
Audrey don't be too hard on yourself. It may be that you can enjoy spending time with Don much better this way. You won't have to worry about all the everyday stresses of nursing him, but can concentrate on just being together when you visit. You have had such a hard time I'm sure need to get yourself well and up and running again so that you can go on being the wonderful caring wife you have been for over fifty years.
Love
Vicki 💞
Dear Audrey, you have fought as hard as anyone could. There comes a time for us all to accept the inevitable, whatever life has thrown at us. If it weren't PSP, it would be something else. Don is being cared for now, and you are free to grieve. Hang on. Love and peace, Easterncedar
I can't
Dear Audrey, have responded to your reply on your last post but will say again he is in a safe and caring place and you can concentrate on being there with him with no other responsibilities other than to be his wife and show him your love. You have done all you can and now you have to leave it to the professionals to take on the role of carer. My love and thoughts are with you Audrey.
Love and hugs
Kate xxx
Dear Audrey, you want your darling at home, we all do but reading your past posts, you have been struggling haven't you. My darling asked me to promise never to put him in a home. I said I can't make that promise but said I would keep him at home as long as I was physically and emotionally able to. I did manage to but I am 65 and have no health issues, physical or mental. Your past posts show you have struggled and although you are alone now, think what it would do to you if you had to care for him again. Kylie suggested 24/7 at home care which would be great if it's possible.
You will miss him, but don't beat yourself up if he can't come home. Make the most of visiting times when you can just talk to him, read to him, doze with him and when you are home spend more time with friends and family, invite folk round for coffee, start a hobby, join a club, anything to keep you busy and with people.
I'm sending you a big hug Audrey. Take care of yourself.
X
NannaB, The thought of him being home again kills me and they have said his organs are shutting down. I wish I could get 24/7 home care but it is impossible. Over $3000 a week for that, which we don't have. I don't know what I will do without him.
I understand how hard it is. My husband had MSA .He passed away in Sept after being totally dependant on me to care for him the last 18 months of his life.I did it alone the first 9 mo.after he got totally unable to do anything.speak,eat,write.....everything.it just got to much for me to do alone.he belonged to the VA health care .they helped me out so much.nurses came to the house and I also was able to get an aide to come 2 hrs a day.As he became even worse I started getting help 4 hrs a day 5 days a wk. He also had hospice .That was a God send because it would never have been possible to keep him at home with out them.It was a long year and a half and I had never seen anyone who was in his condition for so long but he hung on as long as he could and told me he was just getting to tired.i had made an alphabet board for him to try and spell out words so I could understand him but near the end he could not even move his arms so it was really tough. Now that he's gone I look back at how hard it was taking care of him but I would do it again.its what he wanted and truthfully after seeing him all that time the way his life was compared to how it was before he got this terrible disease that took his life I believe it made it easier for me to see him go because I know he had had enough.,and now he is at peace.
It has all been said, Audrey. Don't think of it as a failure on your part. You have given your all to the extent that someone else needs to do the caring. Enjoy this and the freedom that it gives you to share your time together in a loving and enjoyable way. Big hug. X
You know more than they do about him, his needs, desires, his condition, and your circumstances. It is for you to decide what is best. Not them. I have never met you, but I trust your judgement more than I trust theirs. Take a deep breath. Regroup. Then act. Stay in control. YOU know best. x
I know just how you feel Audrey. Please don't think of this as failure, rather than that the time has come for him to be looked after by a team rather than just you. A year ago I had to make the same decision and boy is it a hard time. Guilt, concern, tears flowing. I never thought I would be happy again. However I have accepted this and let him go and now feel so much better with myself, Steve and the world in general. I visit 4 hours every day, we chat, I feed him lunch and we watch the tv together. Doesn't set the world alight but enough for me! I take him treats (of the edible kind) and it is so much better as I feel like his wife again. I have got to know the staff in this time and they do have the best interests of the patient at heart. Yes, it will never be home but the best option for us. I hope you can get the care at home if that is what you wish but please don't beat yourself up if care is needed in a nursing home. The thought of it is sometimes worse than the reality. Thinking of you while you make your decision. It will rank as one of the hardest to make but the benefits are there. sending virtual hugs to you both.
Pauline xx
I really appreciated those words Pauline, and may someday have to use them for my decision.....though we are far from from needing that yet....
AVB
Pauiine, I will not put him in a nursing home, they are impossible to deal with. I wish he was more aware but most of the time he doe not know I am there. He can't eat anymore and they are only giving him liquids with a syringe and his meds. I wish he was more aware and could talk to me but he can't. When he tries to say something I can't understand him so I just lay in bed next to him, cuddle him and hold his hand. They tell me his organs are shutting down. What will I do without the love of my life.
Oh Audrey, your heart is breaking. I feel so much sadness for you. Don sounds as if he is at the end of life stage and the only thing I can wish you both is peace and love at the end of this journey. Kisses and cuddles are wonderful, connecting and powerful. His comfort will also be in the saying of 'I love you'. I am sure he can hear this even if he can't reply. Thinking of you both at this sad time xx
Dear Audrey, they have told you that his organs are shutting down. let them help Don and you through what is coming. Let peace come in. Love, ec
ec, I am having a very hard dealing with this. When I am with him I lay in bed and cuddle him but the tears keep on coming. I don't know how I will live without him.
Dear Audrey I do not see Hospice saying you are not capable of looking after him. I see them looking at an exhausted wife in need of support! Hospice of all the caring community understand the stress you have had, and the fight you have fought to keep him at home for so long. You have been asking for help and they have answered your call and see a need to give you some respite while thay care for him.
They will give him the TLC you know he needs but are so exhausted it is stressing you so much. Fight with them for him! Be by his side and hold his hand while they run about doing the hard work and heavy lifting!
They are on your side! Don't feel they are shutting you out.
Try and rest! I know it is hard when you don't know what is around the corner. If, as they suggest, his organs are shutting down, he is best to be where he is, until he can be stabilised, or well cared for without having to go to another hospital to be treated. It is exhausting to have to travel.
Take heart in that he is in a good place for the best care! Take some rest yourself and be the best you can be beside him while he knows you are there.
BIG HUGS! Stay strong for him!
Love Jen xxx
Jen, He will die there. They have a hard time lifting him. There is no where else he can go. They are caring and thoughtful.
Audrey. Yes, I guess he will. Accepting that is happening is such a hard thing to take in! You can lie close to him, hold his hand and talk/sing to him. Sound is the last sense to be lost. So whether he can signal to you or not, he will know you are there, and appreciate it.
Be there for him, but remember to look after yourself too!
I wish you both peace! Thinking of you.
Jen xxx
I agree with what others have said. This is not a failure on your part. I am sure you are being too hard on yourself.Hospice is there for both of you. When a loved one has come to the point his body starts to shut down they need around the clock care. Hospice is the only place that can provide it. That leaves you free to just love him and be his companion. Try to enjoy this last time with each other. Think of little surprises you can bring him or do for him. Maybe bring pictures of good times you have shared and relive those memories. Get dressed up as if going on a date and look forward to each visit.Bring him some stuff from home. An afghan pictures . Things he will recognize. My husband loves take out coffee from Tim Hortons we used to go there a lot. You should see the smile trying to form at the corners of his mouth. I put a straw through the lid. It tastes better when it is in the familiar Tims cup. Don't forget to bring one for yourself. There is no failure in this . Think of this as opportunity to rekindle your role as wife . I feel often more like a mother with a sick child. There is so much involved with caring 24 / 7. We have no hospice here but are in the process of getting one set up. Enjoy what you have .Prayers and hugs for both of you.
Audrey sending you a big hug, you looked after Don for a long time, don't beat yourself up, you can visit Don as much as you want, it will be quality time that you can spend together. You have done your best even when you was unwell you carried on, take time and rest let your body have a break, look after yourself dear lovely lady. Sending you much love and a great big hug xxxxxx
Yvonne, He doesn't even know I am there most of the time. He cannot eat, choking on everything they try to give him and now even liquids. They are giving him liquids with a syringe. I don't know how much time he has left. I lay next to him there and cradle him in my arms. He won't talk to me or can't, I don't know. All I know is that my love of my life will be leaving me.
Audrey be strong this horrible illness takes everything away, you look after yourself, lay with him cuddle him, tell him Joan much you love him, I am sure he knows you are there. Sending you a massive hugs xxxxx
Hi Audrey, at long last, you will be able to do your proper job, being Don's wife. Its what he needs now. Anybody can do the caring lark, only YOU can be the loving wife. This isn't you failing, it's the professionals recognising, you need help, to fulfil your role. Spend this valuable time, cuddling, telling him you love him, all the things you haven't had time to do for so long. You both deserve this precious time. Don't waste it by feeling angry and guilty.
Lots of love
Heady
Heady, He doesn't even know I am there most of the time. He cannot eat, choking on everything they try to give him and now even liquids. They are giving him liquids with a syringe. I don't know how much time he has left. I lay next to him there and cradle him in my arms. He won't talk to me or can't, I don't know. All I know is that my love of my life will be leaving me.
Hi Audrey, he will know you are there, even if he is not showing it. All you can do now is hold him and tell him you love him. Make the most of this, it will carry you a long way afterwards. Not many people get this privilege, or comfort.
Sending big hug and much love
Lots of love
Heady
Heady, he knows he squeezes my hand but I am so weak this is tearing me apart watching him die. They said 3 to 5 days or maybe more. What will I do without him, I don't know. I even told the social worker I can't watch him every day and she said stay home. I am so weak I am having trouble walking.
Hi Audrey, I know this is the toughest thing ever, but try and keep strong for Don. I promise you, you won't regret it. Being with and cuddling him now, will get you through loads of unhappy moments afterwards. You have been with Don all through this evil disease, cared for him 24/7, his time is nearly over, be there for him. You can do this Audrey. Get some rest, eat a GOOD meal, then go back and love him.
With you every step of the way.
Lots of love
Anne
Anne he has passed. Will not be posting for a while. Haven't the strength.
Peace be with you, Audrey. I'm so sorry. Ec
Ec, He is at peace. I am a wreck, TY
Hang on. You will get through this.hugs, ec
ec, I don't know.
Dearest Audrey, I am so sorry. May Don rest in peace, finally free from this evil illness. That will give you comfort in the dark days in front of you. I am with with you every step of the way. Only a message away, if you need someone to rant to.
Sending big hug and much love
Lots of love
Anne
Thinking of you, Audrey.
Lots of love, Jean xx
Audrey, how are you?
Yes Audrey been thinking about you hope you are ok, big hug coming your way, 23.22 over here, I am laying in bed wanting to sleep, and praying I can xxxxx
Yvonne, My love has passed.
Audrey so so sorry to hear that, I am crying with you, I wished I could just be there for you at this sad time, oh Audrey I can feel your pain, please please take some time for yourself, he would of wanted you too. PSP can't hurt him anymore, sending you a massive hug, Yvonne xxxxx
Yvonne, all I can do is cry and expect him to answer when I call his name.
Audrey xoxo
abirke, Watching my husband, my love die slowly. He doesn't even know I am there most of the time.
I bet he does. I am thinking of you both. Take care of yourself x
formercarer, he squeezes my hand occasionally but it is tearing me apart watching him slowly dying, I am so tired my legs can't support me. They are telling me to stay home.
Horrible
These are dark days. It is really important to nourish yourself physically, emotionally and spiritually, in any way that appeals to you. You might not feel like it, but in order to sustain yourself you should do something to treat yourself today, and you might also prepare something to look forward to. When did you last meet up with a friend that makes you laugh? Do those things that you know will stregnthen you. Be kind to yourself.
love, Janet
Audrey, I wrote a big long message back to you ....but I don't see it ! I think I asked how he is settling and to remember to do as others suggested. Bring stuff from home he would like. Someone said here that the two senses we still have are smell and hearing when all else seems to have left us.....So his old blanket or even your pet dog if they will allow it. Reading to him his favorite book or his fave music....or movies. talking reassures him so just read the newspaper outloud.....If there was a meal of yours he loved the smell might bring back good memories.....He may not be able to tell you but in the deep part of the brain he is remembering the days when youd make that meal the kids screaming in hte house or whatever sounds and smells that made it your house.....
Well I wrote a whole lot more but well it was hours ago...
I hope you both are transitioning well to this new environment. Remember he is ok and you need to make sure you get and stay that way as well.
((HUGS))
AVB
AVB, they are telling me to stay home, I am so weak. He listened to some music today but sleeps most if the time. I can't bear thinking of life without him. He can't talk, eat, drink, his organs are shutting down.
Then darling , stay home. Just for awhile. Maybe take tomorrow off or go just the afternoon. Please read others who have been through this ....If you need Heady or NannaB or Ketchupman They have all recently been through what you are going through. One thing they will tell you for sure, is to take care of yourself.....you and your husband have a ways to go you must be strong please get some rest.....
Love AVB
Hi Audrey, I wrote a post but it has gone. Basically I suggested you read Heady's post of what she had learnt - i think it said she should have let the professionals step in earlier. She then was able to go back to being a loving wife, lying beside Steve, cuddling him, telling him she loved him. Just what you are able to do now. Cherish these moments now as I'm sure it will help you in the future. Losing Don, the love of your life is unthinkable and hard to comprehend life without him, but please look after yourself in order that you can continue to show and tell him you love him when with him.
I see Heady has responded to you, she has just recently gone through what you are going through now so take heart in her posts.
(Heady I hope I haven't spoken out of turn above. Hope you are doing as well as can be.)
Thinking of you both and sending lots of love and hugs. Nanny857xx
Couldn't have said it any better Nanny! I'm not doing toooo badly. Still very numb, which I suppose is a good thing. House now covered in paperwork, that I have to sort through. At least I can shut the door and forget about it, if I want, which unfortunately is happening quite a lot!
Lots of love
Heady
Not what you're looking for?
You may also like...
THEY WON'T LET HIM COME HOME
They have decided that he needs more therapy and I can't take him home. The want to teach him how...
He spoke to me.
On Facebook, one of my daughters in law requested details of a good tattoo parlour near to where...
Changes to home/house...will he be able to cope with upheaval? Any advice?
Hi all, I don't know if anyone can help with this as each case is so different, and every family...
Back to me second home
Hi all
Well two weeks home and back again in hospital infection again . I'm so having doubts as to...
Related Posts
It's me MIRIAM again 
Just come home from the Zumbathon party for PSPA
Me again... progression with mum
I feel levadopa is not working for me and making me worse. If I ask to come off it will I have to go into hospital?. I have probable cbd. 
My husband either moans and groans ALL day long or he coughs constantly. It is awful for him but drives me mad but I know he cannot do
