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Is anyone awake to hand hold through a hard time?

(139 Posts)
tingaloo Fri 20-Nov-15 23:54:07

Hi My husband suffers from a chronic, degenerative lung disease and also dementia. We have been ticking along fairly well, although I have been desperate for some respite care for him as I am his sole carer and have not had a break for a couple of years. I have been waiting for weeks to hear from Social Services for an assessment of his needs.
We are now in a nightmare situation. Ten days ago he was blue lighted to hospital with pneumonia, where he has been ever since. He is now physically much better, but as is fairly normal, the infection has exacerbates his dementia symptoms. The first night after he had been admitted from a&e, I attempted to go home to sleep at about 1am, but was recalled to the hospital at about 2:30am as he was so agitated, had pulled out his cannula through which he was receiving fluids and antibiotics, and had removed his oxygen mask. He had had to be restrained by security staff. So I spent that night and the next trying to sleep in a chair next to his bed. Thereafter I went home at night to eat and sleep, but spent most of the day from breakfast to around 9-10pm with him, going home for a couple of hours in the afternoon to feed the cat and sort out things at home. Each time I have gone home, I have returned to find him in a state of high anxiety and fairly delusional.
I was expecting to bring him home at the beginning of next week, although I have been told that a Social Worker would be more likely to come to do an assessment if he is still in hospital.
Tonight, I returned home, and had just got into bed when the hospital called, saying he was extremely agitated, and had again had to be restrained. I asked to speak to him, and he was hysterically demanding that I call the police as "five men had been stealing from him and attacking" him. I asked him if he wanted me to come up, so here I am sitting in a chair by his bed for the night again. It has taken a long time to calm him down from his paranoia that the staff are trying to hurt or kill him, and that I am siding with them, but he is not making much sense. He is quiet now but not asleep, and I am exhausted. He wants me to take him home, and he is actually physically well enough now to go home, but to tell the truth, he is scaring me, and I do not feel able to cope with him on my own as he is now. There have previously been a few incidents at home when he has been threatening, pushed me or thrown food or water over me. I don't know where to go from here.
I love him, and want to be able to care for him.
It is dark, and the night seems to be stretching out before me.

Nana3 Fri 18-Dec-15 08:46:33

You are in my thoughts ting I do hope you are not alone. Love and hugs.

Ginny42 Fri 18-Dec-15 09:25:44

Just popped back for an update and I'm sorry to find that things deteriorated to such a degree. Hugs for being brave when he was being so aggressive, and how very caring to hold him until he calmed down.

You must be exhausted with it all and need thinking time now to make a plan. There comes a time when a single person cannot provide all the care needed, so don't be afraid to reach out and ask for help.

A virtual bouquet for a very brave lady. flowers

Misslayed Wed 23-Dec-15 16:13:15

I just popped by in the hope that your situation has improved. I wish you peace at Christmas.

tingaloo Wed 23-Dec-15 17:14:38

Thank you. I have another thread where I have explained that although the infection has cleared up, DH is still very confused, having some hallucinations, and is quite agitated. He is still in hospital, and we are waiting for a space in a nursing home for permanent residential care to be NHS funded due to his challenging behaviour. Looks like we will have to wait until after Christmas now, as the homes are all full due to people having respite care over the holidays. I am sure it is the right decision for both of us, but I am experiencing a mixture of guilt and grief, tempered by relief. I am looking forward to him being settled in his new home, and taking a holiday.

Nelliemoser Wed 23-Dec-15 23:46:50

Tingaloo big ((((hugs)))) I think it is time to look after and protect yourself here. That is not you failing as a carer, it is so you can keep strong enough to keep visiting him while you can.

Judthepud2 Thu 24-Dec-15 22:03:24

Ting I have been off GN for a while and just picked up your thread. My heart goes out to you in this sad situation. It seems that the best solution for both your DH and you is permanent care. One person can not deal with this alone so you don't need to feel guilty about getting much needed support, especially when violence is involved.

Bless you and your DH, especially at this time.

((Hugs))

Synonymous Thu 24-Dec-15 23:44:42

Tingaloo I am so sad for you but also full of admiration for all that you have done and are doing. I hope you manage to get a holiday very soon. flowers

Elrel Fri 25-Dec-15 00:32:16

Wishing you well, tingaloo x

tingaloo Fri 25-Dec-15 07:57:40

A very happy Christmas to everyone who has been on this thread and supported me through a difficult time. All Dh's assessments for nursing care have been completed now, and we are waiting for a placement. He may have to go somewhere as a stopgap until a space at the nursing home of my choice becomes vacant. He has been given meds to calm him down at night, and seems settled. However, he is really confused, and doesn't realise he is in hospital. I am visiting one of my daughters for Christmas breakfast, then spending the day with dh at the hospital. In the evening I am picking my other daughter and her family up from her in-laws and driving them home so I will have an opportunity to spend time with them. I have been in contact with an old and very dear friend, with whom contact had lapsed for a few years. Talking to her, it felt like we had spoken yesterday, and she is coming to visit in the new year. I am so excited about that.
Thank you all again for your hand-holding, advice and support, and enjoy your Christmasses, however you spend them.

boheminan Fri 25-Dec-15 08:04:16

Good morning tingaloo. Your post comes across as very optimistic. How lovely you will catching up with a dear friend today. I hope that goes well, being able to talk warm thoughts about your past will be an (albeit) temporary welcome break from all the 'stuff' that's going on at the moment. I, for one wish the very best of days for you - and your DH. sunshineflowers

tinaf1 Fri 25-Dec-15 08:49:55

flowers hope day goes well and best wishes for 2016

Teetime Fri 25-Dec-15 08:52:35

tingaloo I hope this is a good day for you and your husband and that placement comes through very soon. flowers

Jane10 Fri 25-Dec-15 09:06:39

I can only echo the avalanche of good wishes to you from all of the GNers! I hope you have as good a day as possible. Its good to hear that you have some positive things to look forward to in the new year. Bless you.