I care for my husband who has PPMS, which has worsened over the past year. We used to love going on holidays abroad but haven’t been anywhere for 3 years. I don’t think I could cope with him on my own if we went abroad. I just feel life is passing us by with nothing to look forward to any more. I don’t want this to sound it’s all me me, but I’m struggling at the minute. I work full time, come home cook tea, strip the bed as he wets the bed every night. We are waiting to see an Urologist for this. I have no time at all for myself just too tired. We have carers coming for half an hour in the mornings to help him to get up, and they come for an hour in the afternoons to take him out, otherwise he’s stuck indoors, as he wouldn’t be able to out alone as he has significant cognitive issues. We are both 55 years old, have no children and not much help from family either. My brother and his wife help when they can but they both work long hours. Sorry for the rant, I’m just feeling sorry for myself and hate the way our life’s gone
I feel for you, because I have PPMS (60, diagnosed 2 years ago but been worsening for 7 years), mobility affected so that I can only walk short distances. My wife (together 7 years) is 53 and healthy. She has much the same challenges as you, though it sounds like I’m more capable than your husband as I’m still mobile and don’t need a carer yet.
My wife & I both have the right to our own best lives and that doesn’t always have to mean being joined at the hip, though we still love each other deeply and share the same values and sense of humour. I’m going on a cruise with my Dad (91 and much fitter than me…) and she’s taking her son skiing the week before - no way she should miss out on my account. Controversially, I even suggested she could find a lover when I’m unable to satisfy in that department but she found that idea very upsetting. I recognise the difference between love and sex, whereas to her they are indivisible. But my attitude is that everything is on the table and she has a right to her own life.
I watched my Dad care for my Mum for 10 years until she died 2 years ago. I was constantly urging him not to confuse love & loyalty with attendance. Fortunately, he is still fit & healthy and enjoying things Mum couldn’t do or didn’t like.
I should add that my wife and I went on 2 cruises last year, once together and once with our family in tow. It’s a very protected and accessible environment on a modern ship though my electric chair was a godsend! Used mine from A to B e.g. cabin to restaurant, then hopped out at the other end.
I’m sure if you discuss it, your husband would endorse a frank discussion about lifestyles and is probably acutely embarrassed and sorrowful that his issues are impacting you as they do. It doesn’t have to be about loyalty & attendance and you don’t need to feel guilty that life’s wobblers have tossed the pair of you different hands.
Dear Debbie, I know exactly how you feel… My husband has SPMS and is 61 years old. The last few months have been extremely difficult for us. We both caught Covid whilst in Germany visiting family last October. After spending over 3 weeks in hospital my husband was able to leave the hospital and return back to the UK with me. His condition was very bad and he was virtually bedridden for many weeks. Luckily we were able to call in Responsive Services and also private physio which has helped a lot. He is now back to his usual level but I feel exhausted from it all and desperately need a holiday. We have also not been on a real holiday for 3 years, thanks to Covid. I often feel very depressed because, as you say, there does not seem much to look forward to. We have no children or family nearby. I have a large circle of friends but all scattered in different places so I can only see them occasionally. Luckily I was able to retire early so that I do not have the worry of a stressful job, which I used to have! Like you, we used to go on lovely holidays abroad and even though I know I should be grateful that I had them when we were both younger and fitter, I still miss them so much now! Also not sure if I would be able to cope with him on a holiday. You need a wheelchair accessible room and hotel and also the possibility of hiring a mobility scooter when you get there. Airline disabled services are usually very good if you book in advance. I wish you good luck!
(Bedwetting is a problem with MS, buy him thick incontinence pads for the night, saves you having to change the bed linen all the time).
Thanks for your replies, I think I’m just feeling sorry for myself, Colin’s had a particularly bad week, I’m just tired coming home from work having to strip the bed nearly every day. We’ve tried everything it still seems to come through the sheets. He wears the pull up pants, we’ve tried putting another pad in as well, but nothing doing. I;ve stopped using a duvet over us just leave it at the bottom of the bed as you can’t wash a duvet every time, we just put a throw over us. This is getting me down now, on top of everything else, this is the worst part. We are waiting for a stair lift for him and have been looking for an electric recliner for him, we only have one shop locally and they wanted £2,000 for one, can’t afford to pay that much! Does anyone know of any online shops which are good but reasonable? I really do feel at the end of my tether lately, I feel bad that it makes it sound it’s all about me when I know it’s absolutely awful for him. I’m just tired and need a break, I work 4 days a week in a busy solicitors which can at times be stressful with the workload, I don’t get to sit down most nights until 8pm after stripping the bed, putting wash on, cooking dinner, sometimes having to put Colin in the shower if he’s soiled himself. I don’t want to give up work completely as it gives me some normality but i can’t get more help, which I think we need. Colin’s struggling with a frame now and tends to grab door frames etc, his right eye doesn’t align with the left, which doesn’t help his balance, but there’s nothing they can do about it, it’s nerve damage and also has significant cognitive issues as well, which makes everything worse.
Thanks for listening and if there are any tips about bed wetting it would be much appreciated, we are waiting to see an Urologist, they are thinking of a catheter, we can’t carry on like this.