Husbands carer

Hi my name is Linda I am carer for my husband. I am 71 and he is 75. He was diagnosed with PD about two and half years ago. He has been through such a lot. After a knee replacement which went fine but the day after he calapsed with sepsis and kidney failure and was on dialysis for 2 days and semi conscious for a week. He came out of hospital but was in many ways struggling with recovery. It was months later that he was diagnosed PD. He is on tablets and 24 hour patches but suffers terribly with leg spasms which can last from minuets up to 6 or 8 hours and very often he has them in the night. Recently he has been waking in the night with excessive saliva which just pours out. He is very unstable on his legs some days. He does try to keep himself busy pottering in his shed. After 53 years I have had to move out of our bedroom because of the noise he makes while sleeping. He also has a catheter now which has made life a lot easier after he became incontinent. I am hoping that I can find some helpful insight and support by sharing our journey with others. Thank you Linda
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Hi Linda, welcome to the community.

So sorry to hear about the problems your husband has been facing. It must be a very difficult time for both of you.

We’ve got lots of useful information about muscle cramps and dystonia on our website, which you can find here: https://www.parkinsons.org.uk/information-and-support/muscle-cramps-and-dystonia

We also have useful information relating to saliva control, which you may find interesting: https://www.parkinsons.org.uk/information-and-support/eating-swallowing-and-saliva-control

If you want to speak about any of the issues your husband is facing in greater depth, then we’d recommend that you contact our Helpline, who are able to advise on a wide range of issues facing Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Owen,
Moderation Team

I am worried for you both that a catheter has been used so soon after diagnosis. It’s not, IMO, the best option when there are alternatives to try first.Did anyone suggest to you a sheath. They can be used both day and night. Catheters are susceptible to UTI’s. Google Conveen sheaths and ask for a referral to a continence nurse.

Wishing you all the best,

benji

My husband did use the convene sheath for some time but unfortunately because he also has an enlarged prostate he was retaining almost 50% of his urine and ended up getting infections, eventually he ended up in hospital with sepsis which was very scary time. His urologist decided it was the best option for him. He has had the catheter for about 7 months and is managing it better. He feels more confident about going out and socialising. In fact he feels he has got some of his life back. I know it doesn’t suit everyone and I am very grateful for your concern, thank you

Whatever is best for you both.
Take care.

Hello Linda sorry to hear you and your husband are experiencing life changing problems. I do empathise with you both and relate to your situation. My husband is 76 and I’m 64 and we have been together for over 43 years, he was diagnosed with PD 7 years ago. We too now have separate bedrooms since last year when he too developed Sepsis and was hospitalised with it twice. He actually has to have a ground floor bedroom as he cannot stand nor walk since Aug 18 following another knee operation. He has had 14 operations so far and about to have the 15th to change the current type of knee joint.
I sometimes feel quite overwhelmed by everything that has happened and mostly we now co-exist in the same house. I feel a sense of loss and grieve for our relationship and partnership that we had and to be honest lonely a lot of the time. I have had to give up work as I couldn’t cope with everything and something had to give.
There are an awful lot of ‘I’s in that last paragraph :see_no_evil::woozy_face:
Caring is far from easy and I don’t think I do a very good job a lot of the time. I seek information all the time on what might help B but he wants (and does) ignore it all as much as he can, he makes no allowance for PD. His muscles suffer from jumping and tightness continually in his legs and cause him particular problems in the night. His way of remedying this was to get up and walk around sometimes for hours in the night, he can’t do this now but can just about pull himself upright using the edge of our kitchen sink so he does this throughout the night. The leg jumps were quite extensive and moved into his whole body sometimes in the night involving kicking and hitting me and sometimes falling out of bed. This eased a lot when his medication was changed from rasagaline patches to sinemet tablets and eased further with the move to co-beneldopa dispersible. He too shouts and partially acts out dreams when he sleeps.
Sounds like being catheratorised is a decision your husband is happy with. Ongoing toilet problems have curtailed almost all of our social life as firstly having to be in a wheelchair means B cannot access other people’s homes and certainly not their bathrooms. We have to carry pee bottles with us wherever we go and all the problems of finding somewhere to use them, empty them and keep them clean and not smelling. B has lost through PD his sense of smell and I most definitely have not - causes issues :woozy_face:. So if we go out we don’t go far because invariably I’m asked to take him home to use our toilet. He also has constipation problems and takes lactalose daily to supposedly help with that.
The thing that kept B going and helped mostly was being active and up until last year he was an almost daily gym goer. All B’s his adult life he’d been a cyclist but his poor balance has robbed him of being confident yo do this anymore plus a knee that doesn’t work. He has now been referred to a specialist Orthopeadic Hodpital in Oxford who are going to change his knee joint to a type they call linked that should give him back the ability to stand and hopefully walk again so we’ve a lot of hopes resting on his next operation. Each time the body is subject to infection and operations the Parkinsons takes a hit and the Parkinsons medication doesn’t work as well because it is impacted and most definitely recovery is much longer for Parkinson’s sufferers. What really annoys me hugely is how the medical teams working with Parkinson’s patients work in isolation treating their own individual specialist areas without consultation with each other . As for getting Parkinsons medication on time when a hospital inpatient - well that’s for another time !
I wish you and your husband best wishes and for you both to get support from wherever it’s offered (have you checked your local county council for a carer’s support team). For me coping it’s about finding out and reaching out. All the Very Best Jane

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Hi Linda,
After similar leg spasm difficulties, and after advice via the Parky UK helpline to point us in the right direction, , my husband was put on Clonzepam by his GP. ( now takes two tabs at night) It is a “controlled “ drug, generally used for people with epilepsy at higher dosages, but has worked brilliantly for my OH as regards pain reduction and the cramps.
Saliva also a problem …
Various techniques suggested by Speech and Language folk but more recently a discussion with consultant re what might help, which concluded with opting to try some drops ( yet to be prescribed) which should help reduce quantity of saliva produced. A fine balance between having too much and too little saliva. Injections into glands also possible, but irreversible obviously for about three months and have side effects on mental state so that was a no no. Horses for courses as ever. So many of these things make socialising or simply going out quite difficult and it is tiempting not to bother, but a day pretty much at home today has left me in a rubbish state…there has to be a better way.
Regards, Pippa

Hi Jane,

thank you so much for sharing your journey as a wife and carer. I totally agree with all that you say. It’s like reading about myself and my husband.I also understand the feeling of loss and grief for your relationship with B, especially the lonely feeling. Some times when he falls asleep watching tv i just could cry when i look at him.

Its hard to stop comparing the man im living with to the man he was. I love him deeply and I get so frustrated for him. Thankfully he can still get up and he potter’s in his shed on a good day but like your hubby when the cramp spasms start he can’t settle and and ends up in bed. They wear them down so much. He has had some relief for a few days, he has been given a slow release Madopar to take at night along with the Co-Beneldopa 4 x daily. i am so grateful to you and knowing there are others who understant the struggles we face.

Please dont think you are not doing a very good job. We are learning to cope each day with what it may hold.

Best wishes to,
Linda.