My husband came home and we had 27 nights together before it became an unsafe placement.
The home care team were polite and kind but I felt not good and he didn’t want their interventions, he only wanted me to help him and would become anxious and breathless when I left the room.
I found myself cancelling more visits than we used.
He always needed the help before or after they came despite me trying to change the time of some visits.
He needed help day and night and hardly slept.
His transfers improved when he wasn’t fatigued and we often did well, however when he was tired they were almost impossible for me to do on my own.
He developed neuropathic pain in his left arm and hand, community physio tried hard to relieve it with massage and paracetamol, it worsened so the gp recommended codeine phosphate alongside paracetamol and massage, after 5days of constipation and worsening pain and agitation he was given amitryptyline which after 3weeks now seems to be lessening his pain.
His agitation and anger were worse at night when he would kick the bed and bed rails wanting to get out, he would shout and cry out for hours, I was always there, afraid to leave his side in case he hurt himself, during one of his daytime outbursts he fell whilst trying to get out of his wheelchair in anger, I ran and managed to break his fall but injured my shoulder and back.
Thankfully he was ok and his daughter was able to help me get him up from the floor.
She was en route to visit us at the time.
After this I asked family for help as I was struggling with too little sleep and felt exhausted, help was too little too late, my shoulder and back were not recovering because I continued to transfer him and eventually I just could not continue.
I know family help was there in that crisis but it’s not a long term option at all, everyone works , has families of their own and live too far away.
It’s a very brief resume of those 27 days and nights but so much happened in that short time, he was happy to be home but never seemed to be content, couldn’t sit for more than a few minutes, we were unable to have a conversation due to his speech loss, the team can’t explain why his speech is affected as it’s not normally the case in L side weakness.
I feel like I’ve let him down now, he is in a local care home and cries every day pleading to come home. We are both heartbroken and devastated.
The home is amazing but too expensive to be a permanent option.
I’m self funding as we already had a 4 week funded placement between his hospital care and coming home, this was due to his aggression towards me, we are not allowed another funded placement.
Even if he is awarded nursing care funding the top up is £600 per week which is unaffordable for us.
So at the moment I’m using his savings which will be down below the threshold in a couple of weeks.
I’m starting to think I must try him at home again but worry that it will fail again.
I remember feeling claustrophobic, I couldn’t leave his side, even to have a shower, the dog didn’t have walks, I felt lonely and isolated and like my life was on hold.
What do other people do in this situation, I’m trying to make sense of everything, his stroke was just before Christmas so 5 months now, I hoped that I could care for him at home and we could eventually go out in the car and have a comfortable slow paced life together, is there an alternative to a care home placement, more affordable but equally more effective than the care package which really didn’t work for us at all?
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