Hi, this is my first time post, although I've been on this forum many times looking for advice, and usually finding it.
I have found so far that any problems I've faced, there is someone else out there who has faced the same.
My partner was diagnosed on November 2015. We didn't live together at that point, but he moved in with me soon after diagnosis as he lived in a second floor flat. Right from the start he was totally resistant to accepting help, he was determined to fight the disease. Consequently planning ahead was almost impossible. Life was very difficult as he only listened to advice after a crisis, eg a bad fall. As you can imagine it was very frustrating for me, and after many rows , I had to accept that he was going to deal with things "his way".
Fast forward to this year.
He is now living upstairs, ( wouldn't listen to advice about adapting the downstairs)and is completely bed-bound. After I almost had a breakdown he agreed I needed help and could see I couldn't cope alone. We now have his son, and a friend of his son, sharing the care, coming in three times a day to get him up in the morning, to shower him etc midday, and to call at night about 9.30 ish to move his position and see to anything he needs at that time. I go to bed at 9pm every night. At least, I go to my room, try to relax and de-stress enough to sleep! He then wakes me (by phoning me) at 2am, to go and help him lie down ready for sleep.
Now, that worked for a while, although I have always had trouble getting back to sleep, but recently the wake up calls have increased. For example last night ( a particularly bad one ) I was up at 11pm (he needed a wee), 1 am (same), 2.15am to settle him down (he watches tv until then), 4 am (to move him on to his back for a few minutes to relieve pressure on his shoulder ), 5 am and 6 am ( same) and then I got up at 7.45am. From that point he shouts me whenever he needs something and the numerous trips up and down stairs begin!
I am not the fittest 67 year old , I have arthritis "everywhere". My back is the worst, my knees (already had one replaced over 10 years ago), my neck and shoulders, and now my hands are starting to be affected too. So I struggle with any lifting, and the stairs wear me out.
To sum up, (sorry for the length of this first post!) ............ I am now at my wits end. I'm exhausted. Everyone around me saw this, and I've managed to arrange one night off weekly ( where possible) and I go to my daughter's for a decent nights sleep. This started about 3 weeks ago and did help initially, but now after more and more nights like last night, I realise I can't do this any more. I'm physically exhausted and am on medication for anxiety, have counselling..........which all help, but the lack of sleep is impossible to live with. My partner is getting weaker, he is now struggling to talk at all, his breathing is laboured, appetite very small, but he recently got over a bad chest infection, to everyone's surprise, so is quite strong.
As we all know ,it's impossible to predict how long he will be with us, so this situation could be the same for a while, or worse. I feel so guilty saying to everyone, I can't cope, but I just can't.
It's very expensive for all night care and whilst he could afford it, he is very reluctant. I don't have any other ideas.
Someone out there must have had the same issues, any suggestions?
Apologies again for length of this........ I think I needed to get it off my chest, so if you've read it all, thankyou.
I have found so far that any problems I've faced, there is someone else out there who has faced the same.
My partner was diagnosed on November 2015. We didn't live together at that point, but he moved in with me soon after diagnosis as he lived in a second floor flat. Right from the start he was totally resistant to accepting help, he was determined to fight the disease. Consequently planning ahead was almost impossible. Life was very difficult as he only listened to advice after a crisis, eg a bad fall. As you can imagine it was very frustrating for me, and after many rows , I had to accept that he was going to deal with things "his way".
Fast forward to this year.
He is now living upstairs, ( wouldn't listen to advice about adapting the downstairs)and is completely bed-bound. After I almost had a breakdown he agreed I needed help and could see I couldn't cope alone. We now have his son, and a friend of his son, sharing the care, coming in three times a day to get him up in the morning, to shower him etc midday, and to call at night about 9.30 ish to move his position and see to anything he needs at that time. I go to bed at 9pm every night. At least, I go to my room, try to relax and de-stress enough to sleep! He then wakes me (by phoning me) at 2am, to go and help him lie down ready for sleep.
Now, that worked for a while, although I have always had trouble getting back to sleep, but recently the wake up calls have increased. For example last night ( a particularly bad one ) I was up at 11pm (he needed a wee), 1 am (same), 2.15am to settle him down (he watches tv until then), 4 am (to move him on to his back for a few minutes to relieve pressure on his shoulder ), 5 am and 6 am ( same) and then I got up at 7.45am. From that point he shouts me whenever he needs something and the numerous trips up and down stairs begin!
I am not the fittest 67 year old , I have arthritis "everywhere". My back is the worst, my knees (already had one replaced over 10 years ago), my neck and shoulders, and now my hands are starting to be affected too. So I struggle with any lifting, and the stairs wear me out.
To sum up, (sorry for the length of this first post!) ............ I am now at my wits end. I'm exhausted. Everyone around me saw this, and I've managed to arrange one night off weekly ( where possible) and I go to my daughter's for a decent nights sleep. This started about 3 weeks ago and did help initially, but now after more and more nights like last night, I realise I can't do this any more. I'm physically exhausted and am on medication for anxiety, have counselling..........which all help, but the lack of sleep is impossible to live with. My partner is getting weaker, he is now struggling to talk at all, his breathing is laboured, appetite very small, but he recently got over a bad chest infection, to everyone's surprise, so is quite strong.
As we all know ,it's impossible to predict how long he will be with us, so this situation could be the same for a while, or worse. I feel so guilty saying to everyone, I can't cope, but I just can't.
It's very expensive for all night care and whilst he could afford it, he is very reluctant. I don't have any other ideas.
Someone out there must have had the same issues, any suggestions?
Apologies again for length of this........ I think I needed to get it off my chest, so if you've read it all, thankyou.
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