Tomorrow, B. leaves the Palliative Care Unit at the hospital and goes into a nursing home.
It is nearer home and seems to be very nice. I took my sister in law, who used to be a care home inspector, with me when I visited it. She thought it was OK.
I feel awful that B . is not coming home, but he needs 24 hour care. I am not sure that he is happy with me at present. I am not too happy with me either, I never thought it would come to this....
Hi my partner is due out of the nursing home tomorrow where he has been the last 2 weeks in respite. I think they have been great with him there and am now getting anxious about having him home again. I know he is looking forward to coming home . It has been so great having a break from it all. I know how you must feel it is soooo hard to realise that home is no longer suitable and am wondering about this stage mysellf. I know they dont want it they want to be home. So heartbreaking, chin up hope all goes well xxxx
Traumatic change for both of you, but you know you are doing the right thing. When you visit him, you can be focused on really being with him, rather than nursing him, more lover than nurse. Don't beat yourself up for making this decision. You can make the best of it, and he will be safe. Hang on. Be kind to yourself. Best wishes, hugs, ec
Thank you. The home is nearer than the hospital, so I can pop in and out whenever unlike the hospital which is 35 minutes and 32 traffic lights away!
Robbo
Good luck to you both. You are not superwoman and it is impossible to care for someone 24/7 without additional support. Like you I didn't have that support and had to put my husband into a Care Home to gain time to sort things out and to get CHC. I had no idea we would wait months for it and didn't think he would die so soon.
We actually found a Nursing Home nearer to us but the very nice woman dealing with CHC told me we could pay fir it ourselves! She had no idea of the care he needed. Neither did Marie Curie who wished me luck but no help!
He ended up in hospital and died there. I spent the last three weeks with him making sure they knew what care he needed. I really wanted to take him home but nobody really helped us and I was on my knees by then!
I am glad you have found a nice Nursing Home as it will help to know he is being cared for. Check them out on the CQC website too...just to make sure!
Lots of love and hugs to you.
Marie x
Thank you Marie. I have appealed the DST and my son has made a complaint about the assessment. B. is going to be assessed when he is in the home.
We just had a hiccup as when they were ready to transfer him, ambulance ready, they found a split in his peg tube!!! Panic over now, it has been changed and they are awaiting the ambulance again.
This Caring lark is certainly a roller coaster of a ride!
Sending you my best wishes and hugs too. Rx
No one can be happy,it just what one has to do,don't feel guilty ,you have done what you can do.
Take care of yourself as well
Dee
Dee, Thank you. I do feel guilty. He wants to come home and I think he thinks he can manage to help me. We left him trying to get out of bed, despite being told that if he falls he will be back in hospital. His legs are bruised through trying in hospital. I have told the carers and they are aware and willl watch him, but it doesn’t make it any easier leaving him. X
We all have to make some decisions that weigh on our shoulders but you do have to take your of yourself too. Jx
Darling Robbo, I know exactly where your coming from!! The feelings of guilt are absolutely awful BUT I’m afraid sometimes there comes a time when a nursing home is the only way! It’s a new stage and not a particularly nice one, saying that B will I’m sure, get better care there than you can give him at home, a harsh fact but true! My Mum and I couldn’t possibly give my Dad the care he now needs at home! Try not to beat yourself up too much, why? Cos it won’t help!! Hugs, big ones! X
Thank you Satt 2015. I find it heartbreaking to think that B might not come home again. He told me to the other day that he wanted to come home. I explained that the home would cater for his needs and that he was a step nearer to getting home. (I still hope that will be possible).After I left he put his face into the pillow and became unresponsive. Luckily, a friend turned up at just the right time and cheered him up. Meanwhile, I was at home, sobbing my eyes out!
Bless B, the asking to come me home may continue for a while.....very very hard to deal with but somehow you have too! Explain gently that you cannot manage the care at home and to keep you well, this is how it has to be, for now. I’ve cried buckets just like you, but 6 months down the line, the tears are less, the stress is not!! But that’s life with Psp, shit! X
Remember you will both find it easier as he develops new relationships and you are able to do the things you need to do and have enough energy to , as ec said, be his lover not just his carer.
AVB
You do know what it is like and I thank you for your wise and kind words. I love him so much , I do want to be his wife not his carer, but after six or more years it is hard to hand over the reins to someone else. Rx
I understand....You cannot forxce yourself to feel happy about this arrangement....but when you start beating yourself up, just come back here and scream and know we have or are going through it with you....How many other wives or husbands have had to do this, Kevin 1 being the most recent....He like you with your husband , just wants to do the best for Liz what more can be done but what you are doing....
Love andrea
I was able to keep Chris at home but I still have guilt feelings of what I could have done. I just think we will feel bad whatever. The care needed varies so much. If the decision is taken and you have done the checks you can, then make the most of the situation. Its all we can do.
love from Jean xx
Thank you Jean. You are so right, guilt goes with the job. If I didn't have arthritis in my back and spondylitis in my neck, I would have him home like a shot, so I guess it is my fault that he is going into a Home.Rx
Its not your fault if you have physical problems. I said very clearly to Chris that if my back got worse it would mean I couldn't continue to care for him. It is a very physical job being a carer.
For the last 8 weeks - home after hospital, Chris was bed bound. He couldn't do anything. The carers came in and I only had to feed him and comfort him. He wasn't in pain. But it needed two to do anything at all. I think I was lucky with the palliative Team at home.
Do you have that option ?
Chris wasn't trying to get out of bed. That is too worrying for you !!!
Jean xx
Thank you. X
Dear Robbo,
I know exactly how you are feeling. 2 years ago I had to take P to the nursing home where he had already had a couple of weeks in respite. I was at the end of my tether and it was not something I had ever thought I would have to do.
2 years on and he is safe and well cared for but I still feel guilty every day that I couldn`t continue with him at home. I know it was the ONLY solution for us but it didn`t make it any easier then - or now.
You are doing the best for B, even though it may not feel like it now.
Hugs to you.
xx
Thank you so much NanBabs, that helps a lot. You definitely know how I am feeling having been there yourself.
At present I am waiting for the call to say that B. is on his way to the home. I'm a bit stressed to say the least! We love them and want to care for them in the best way possible and at present, I think this is possibly the best way. I do hope so. Rx
Do not beat yourself up. You can only do so much. 24 hour care can not be done by one person. Let the staff do the personal care and you can enjoy some quality time with him. You may have to be firm with him if he gives you too hard a time and make frequent short visits. I had to do that with my mom. It was hard but necessary to save myself. Had a sick husband and handicapped girl at home to look after. Mom stayed with us until she started being awake at night .Th hardest decision of my life. Now my husband is aproaching that level of care and I so do not want to have to do this again but I know I must most likely. Keep strong my heart goes out go you.hugs.
Novella, I realised that my message did not get through before. I am amazed at your strength, with all the problems that you have to deal with. I do hope that things are working out for you all and thank you for taking the time out of your busy life to give me comfort. Bless you! X
Yes don't beat yourself up, not everyone is able to keep our loved ones at home, even though that is what we all want to do, you have done your best, like us all, maybe he will be able to come home, if not you are still there for him. Yvonne. Xxxxx
Thanks Y&G, I live in hope. My daughter says that because I have had a bit of space with B being in hospital, I am feeling better and stronger. She told me not to make the mistake of trying to do all that I was doing before, because of this. I think she is right really. X
Remember, you are doing the best for him that you can. No guilt, no "what if's" If he did not need to have this care I am sure you would not make this decision. and , after a bit a new routine, schedule will become easier and you and he will understand or a t least accept the change in housing.
Do Well ....I think you already are....
AVB
Another Downturn for my sister
My husband’s trials are over 
My darling dad is finally free of PSP. Another angel is watching down over me.
Sad news the 8 yr battle is over.
