Carers for ME/CFS sufferers

I am new to the site and am currently looking after my 83 year old partner who has suffered from ME/CFS for several years. This has now become worse since he has had a series operation. Just wondered if anyone else is in a similar situation and how hey deal with the negative thoughts and his brain overthinking during the night. He has limited mobility at present.

How long ago was the operation? I’ve had about 8 now, I bounced back much more easily when I was young!

Hi @Karen2420 and welcome! I don’t care for someone with ME/CFS, but my wife has had a spinal cord injury and some of the symptoms are similar - the constant tiredness, pain, low mood, short activities requiring long recovery…my wife found that reading helped with the overthinking at night. It certainly didn’t stop it, but it did help to control it.

Hi. The operation was 7 weeks ago and he has had a UTI since. It was a serious op and seems to have kicked started the ME/CFS and I am trying to help him recover enough to go for the check up at the end of next week.

Hi Charles47. Thank you. Unfortunately, he has lost interest in reading anything. He also worries about disturbing me. You must find the same - disturbed nights mean tiredness and lack of energy during the day.
Thanks for your suggestion though. Greatly appreciated.

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Recovery time after an op will always be longer with CFS/ME. Might be worth talking to the hospital about that if he has a diagnosis, as they may wish to wait a few weeks longer to assess progress.

Does he have any photos that evoke happy memories? I have a few thousand on my tablet and phone that I’ce copied over from my collection of family photos, some of which go back 70 years and more. A few are favourite ones that I’ve restored to something like their original state - but the point is that if they evoke happy memories, they might help to lift his mood?

Wat sort of op was it? Abdominal, joint replacement or ?
I was told once that it can take up to 6 months for the anaesthetic to totally leave the system, no idea how or why.
I never sleep much in hospital, and when I got to sleep someone would always wake me, even if I had a private room, to do some observations or other things. So my own first month home involved a lot of sleep.
Does he have a reclining chair? My disabled mum loved hers, right up to the day before she died.
It would enable him to sit comfortably in the lounge and be “up” but still fine for a snooze.
Is he eating much?

that’s a good idea. Thanks. Will suggest it to him. Many thanks.

He had an emergency colostomy and had a lot of infection. Didn’t realise the anaesthetic could take that long to leave the system either. Haven’t got a recliner and I am trying to get him to eat more gradually as he has lost a lot of weight. Many thanks for your thoughts.

When I was 52 I was diagnosed with a large tumour on my right kidney. To remove it I had an incision from mid rib to right hip. All the abdominal muscles were cut, to get to the kidney, but I’m still here to tell the tale. For ages I could do very little other than walk - my husband was alive then and I was taken for a walk every day, even if it was frosty. We’d always gone for a walk in the New Forest where we lived most evenings, but it December it was very cold! 20 years later I have part of my abdomen with very little feeling, none in places. Bending and twisting are not always comfortable. My appetite went too. I expect you were given dietary advice, for me I didn’t want a lot to eat, yoghurt and nibbles were better. In the next 6 months there will be a lot of healing. After 6 months the scar tissue will have formed and that’s stronger than normal tissue. Lying flat is uncomfortable, in the recliner I could bend slightly. At first I could only hobble, reminding me of the school history books showing neandearthal woman!!!

Thanks for sharing that. You certainly have been through a lot. It seems you try to keep positive about it. Dave had serious infection and a fistula between bowel and bladder. The infection turned into sepsis so his abdomen had to be cleared out and a loop colostomy performed so that part of colon cut off which means he has a colostomy (stoma) bag. He has a catheter at present which will be removed at the clinic next week.The ME/CFS fills his head with negative thoughts which has hindered his recovery plus the fact that he is 83. He feels recovery is very slow despite being told it will take a long time. He has felt better today and been a bit more mobile so am hoping that will continue as long as he doesn’t overdo it.

I had a friend whose wife had the same op a few years before me, a huge help. I asked him how long it was before his wife was really properly back to normal, he told me 3 years, which was about right. It’s now part of my past history, but having gone shopping for one Christmas knowing I might be dead before the next one, I’m just glad I’m still here. I just try to make the most of every day. Today I’ve fulfilled a little ambition. I’ve finally had the curtain rail fitted in my extra long conservatory. That’s taken me 11 years to have done due to family issues, but it’s made me really pleased. Then I cooked a lovely spag bol for my eldest son, delicious. Not big things, but still something good.

Yes it is the little positive things that should help recovery, even if long term,