Any Wives with A husband Diagnosed Like A Chat

[Janey1]

Hi Kas

No, you are not selfish at all, you are human.

So sorry to hear what you are going through. Like you I had hopes of a stress free retirement, at least for a few years. Then covid hit and simultaneously PD.

Your husband seems to be very scared of the future, and it is understandable but I can see where you are coming from. It is a disease that affects both of you, and you will be carrying a double burden, looking after yourself and him as well. My husband thankfully has hobbies he can still do. Does your husband have interests that will stop him focussing on his condition?

I know others will have more constructive ideas - if your GP is good they may be able to point you in the right direction for help.

Whichever way you look at it it’s a diagnosis that pulls the rug out from under your feet. All I can say is, none of us know the future, his disease progression may be very slow, better medication (or even a cure) may be round the corner.

Please don’t think you will have to spend the next years hanging around the house. That would depress anyone, and your husband sitting ‘waiting to die’ is awful. I don’t know how much the PD affects him physically, but can you give him things to do to keep him focussed on something other than his health? I have ‘encouraged’ my husband to clear out and rebuild his shed, and he is much better while busy.

This is a boat none of us wants to be in, but unfortunately we all are. Don’t give up hope and stay strong. Push him if you need to. Can your children help at all?

Sorry this is so long. I do my best to live day to day, and while I can, I go on trips on my own - my husband is perfectly content to stay at home.

Post and let us know how things are going.

X

[kas1]

Thank you for your kind words, Janey.

Unfortunately, when my husband was coming closer to retirement. he had said that he may join an amateur dramatics group, but once he retired (pre any idea he had PD), he just kept saying he would think about it. It was the only hobby he had previously suggested, so I have brought up the subject a few times, to no avail. He had been a member of a Walking Football team, but hasn’t played for over a year due to his health (even though a year ago he had no idea of his PD, he thought he just had a frozen shoulder). He doesn’t really have hobbies, other than playing the piano, and he isn’t very sociable, but we had expected him, in retirement, to perhaps have more time to start some new hobbies. Now he doesn’t want to. He’s not interested in gardening or DIY or cooking, and now doesn’t even want to eat much, saying he’s not hungry - he’s lost a stone and a half in the last few months.

His PD is in the early stages - tremor, constipation, brain-fuzz at times, anxiety, etc but he’s physically OK. Both of our fathers died four years ago with PD (and his also with dementia), both diagnosed in their 80s and died within 4 years of diagnosis. However, he doesn’t really do ‘thinking’, whereas I’m a deep thinker and researcher, so despite our dads, he really has no idea what’s in store (though I know it’s different for everyone, so none of us really do!). (I’ll explain what I mean, by saying that I asked him what his favourite ice cream was, and he said he had no idea as he’d never thought about it!!! ) He says his doctor told him not to do any research on it so he hasn’t, however, I’m well aware from research and our dads, what the future may be like, at least as far as someone who hasn’t dealt with it 24/7 can know. I can’t suggest we go to a support group because I know it would scare him if he saw people there with later stages of PD.

I had already started to go on solo holidays once a year, since my mid-fifties as we like different holidays and he’d never cope with mine - very active, up at dawn and back late, out in the middle-of-nowhere amongst nature etc, - so having solo holidays is not the problem in itself (though I’d miss not having holidays with him too), but he is very sensitive and misses me dreadfully and hates the idea of me not being here with him (and doesn’t cope well alone), made worse now with PD, so I am torn and feel so guilty.

My stress comes from the fact that I say we have to live our lives to the fullest as long as we can, then at least it’s easier to cope when you can no longer do those things, but his attitude is more like ‘I can’t cope with thinking of anything except my health’, and I just want to scream. His idea of a decent day is to sit in front of the TV napping, broken up occasionally by playing the piano. We could have 20 or 30 years of that ahead of us, and I’ve said this to him, but it makes no difference!

Thank you Jason for your helpful suggestions. I shall take a look through the resources. How do people deal with constipation? He takes Dulcolax, then won’t go out the next day until he ‘goes’, so is there anything he could take which means it would give him relief far faster? I think this is one of the main reasons he hardly leaves the house, as he always worries about needing a loo nearby.

Thank you both, I know I am not alone, but it is hard, isn’t it?

[Jenny1]

Thank you Bootycat13 i will build up my strength.

[Jenny1]

I have read Kas1 and Janey 1 about your husbands and it is like reading my thoughts and situation I thought it was the only one bless you both and anyone who is going through this ,lets hope the future brings a cure or better treatments.

[Bootycat13]

Hi Kas1, No your not selfish at all , we all feel the same way, my husband got diagnosed with kidney cancer in March , i felt helpless when he was diagnosed with PD, but I now feel even more helpless , he’s to old for any treatment & he has to many other health issues.

[Jean1]

Hi Kas1 et al. Reading your posts, especially yours Kas, resonates so much with my situation. I can’t really offer any advice as we all have to cope with the effects of PD in different ways due to the complex nature of this most hateful disease. We’re 6 years down the line and must admit that there have been many times I’ve felt completely overwhelmed with it all, especially latterly. Re constipation, my husband has always suffered with this, but it’s become much worse last year or so. He takes Cosmocol sachets which seem to help. I try to remember to give them to him daily. I also bought golden linseeds as recommended by the PD nurse. Liquorice also seems to help. My heart goes out to everyone who is afflicted by Parkinson’s. So many hopes, dreams and plans for a well deserved retirement have been shattered. I always say that now this is as good as it gets, so we have no choice but to do as much as we can while we still can. Carpe Diem and very best wishes to all. Jean

[kas1]

Hi Jean and everyone! Thank you for you good wishes and helpful comments. By chance, my husband had a doctor’s appointment this evening (not about PD) so we made the most of it and asked for advice on constipation, anxiety and stress. He has been given a prescription for something to take every day, but we’ll have to play around with the dose until he finds the dose that helps him the most. We also asked about a Parkinson’s Nurse and she said we should have been allocated one, so advised us to ring the consultant and ask. And she’s told us to apply for CBT through the Let’s Talk service. So that all sounds quite positive. Luckily, my husband isn’t the sort of man who’ll refuse to see a doctor, so that’s a bonus!

Sorry to hear all your stories, and sorry we’re all in the same boat, it’s not great, is it?!

[Jean1]

Hi Kas, glad to hear you had a productive appointment with your Dr this evening. Also glad to hear that you seem much brighter and positive. Sometimes all it takes to lift the spirits is simply talking to someone, and, importantly, being listened to… I hope these first small steps forward result in improvement to your current situation. Wishing you the best of luck. Jean

[kas1]

Hi! Yes, I was feeling a little brighter, thank you - as I’m sure you all know, there are some bad days, some good. His doctors appointment last night, regarding a tender lump on the back of his leg, resulted in a blood test early this morning, followed within the hour to tell him he has DVT! It never rains but it pours!!! So he was put on medication immediately and now he’s going to have yet another scan, (having recently had an MRI scan and a Nuclear Scan), to check out the situation. He was of course, understandably very stressed, but a chat and some reassurance that I’m right here for him, and the fact that he can see that people are trying to ease things for him, have helped. His confusion over all sorts of medication will need careful watching, as he just can’t seem to remember what medication is for what or when, so I’ve got him one of those 3 times a day tablet box things to make it easier. Do any of you have any experience of DVT? Anything I should be aware of? Thank you all. My thoughts are with you Bootycat, Janey, Jean and Jenny and everyone else on here too.

[RachRob]

So sorry to hear about the DVT Kas, it must be such a worry for you. Hoping that your husband receives the best of care and is on the mend soon.
I really appreciate the honesty on this page. My DH is 55 but I am 42. We have been married for 18 years, it already feels like a lifetime. I already feel that most of my life is gone and now the concept of being a carer for the next 30 years pretty much makes me feel that my life is already over. Sorry if that sounds harsh but I feel trapped, I guess my mental health is pretty low at the minute but it is big girl pants on as it is school holidays and have to keep it together for the kids.

[kas1]

Hi RachRob! Thank you for your thoughts. I understand exactly how you feel. I too feel, at times (particularly on low days), that I am trapped, in large part because my husband doesn’t want to do anything, but although he’s not selfish, he is scared if I go off and do my own thing sometimes, and all I see is a future of 20 or 30 years of nothingness and ultimately being a full-time carer - then I feel mean and guilty, as it must be far worse for him, not knowing what the future holds, and what he’ll have to deal with. Even at these early stages, I am his carer in some ways already, but that’s OK, I love him and he’s been there for me when I was in a bad way (four years ago, we had six months from hell, where both our dads died (with Parkinsons, in their late 80s), my son had a car accident that should’ve killed him, but thankfully did not, though left him with many life-changing injuries (and he will need full-time care as time goes on), my daughter found a lump in her breast (thank fully turned out not to be cancer), and I had two operations, and I was looking after my mum, so consequently I ended up with PTSD and had counselling as I was depressed for the first time ever in my life), and he was my rock, so I will be with him all the way, of course. My experiences have helped in that I understand better what he may be trying to deal with/depression etc, but also hindered, in that I understand better what he may be trying to deal with, if that makes sense!!

It helps that I am the practical one, the information-gatherer, the do-er, generally tend to just get on and do what’s needed, and as I was a child-carer, I’m used to dealing with the needs of others regardless of how unpleasant it is, and being ‘useful’ has always been important to me, so that helps. However, I really don’t know what we’ll be dealing with as time goes by, so it is still scary.

It must be hard for you (and the kids) - at least all mine have left home so I don’t need to worry about their needs too! Do you get any time just to yourself, and just you and the kids, so that you/they get some respite from things? Do you have family nearby who can help out?

Finding this forum helps to make you realise you’re not alone in feeling depressed, angry, guilty, etc, I’ve basically told my husband that we either find things to do together, as I can’t bear the idea we just stay in the house most of the time forever, or I do things alone sometimes, or I know I just won’t be able to cope. On a good day, he agrees with me, so I’m learning to read the signs, and only mention ‘nice things to do’ on good days!! And you really do have to have a sense of humour!!!

[Bootycat13]

Hiya kas 1, just read your message about your husband’s constipation, mine takes prescription Docusate ,and it seems to work .Hope that is of help🤞.Take care

[kas1]

Thank you Bootycat, I’m making a list of things to try and we’ll work our way through until we find something that suits him. The doctor has now prescribed Lactulose, saying that should work better for him than Dulcolax, so we’ll see. I’m going to buy some golden linseed too. And for a man who’s not a great fruit lover but eats some vegetables, he’s learning to enjoy those at last too! (He doesn’t have a choice as I do all the cooking and I treat him like I did my children, in that I cut the veg up small and hide it in other things! Ha ha!!! He even enjoyed some courgette cake!!!). If I stir fry veg, he’s happier to eat them, as there’s not much of any one particular veg in it! And since I said he should drink more water, he’s practically walking around the house with a water bottle in his hand!! At least he’s not one of those men who refuse to take on board advice (well, some, at least!!)

[CCHRIS]

Got caught out by the sleet yesterday, but it was so lovely too few the cold air–even though freezing cold. It’s the heat I can’t stand. Reason? I have MS, along with many other disorders that added to mu hubby’s PD makes like terrible

[Janey1]

I feel for you Rach, having children and being young yourself it must all be doubly difficult. Hateful disease. It is so easy to look into the future and see nothing but darkness, and I have done that a lot. I have to pull myself up sharply. We don’t know the future thankfully and things may not be as bad as you fear. However, it is good to rant here when an escape of feelings needs it.

I am not very articulate this morning…but had to reply, not just read. Obviously I must need a coffee!

[Janey1]

Hi Kas

You’ve really been through the mill with your father and father in law and all the other family problems. Hardly surprising you had PTSD. Your husband developing PD just after all that is like the final blow. I would have been on my knees long ago.

I am glad that I too am the organiser and sorter out in the familg

[Janey1]

Sorry, must have pressed the wrong button! I am really not with it this morning! Think I had better defer any more answers until later.

On another note, does anybody else find it tricky typing without autocorrect? My spelling is good but one finger typing on a tablet = lots of annoying typos…

[Kipper]

Hi all, really appreciated reading your chat. I don’t normally post but I thought I would be brave and say ‘hi’ and a special wave to Rach. There are some similarities in what we are going through, my husband was half diagosed a year ago and properly about a month ago, he is 42 and I am 41…we have 4 children 10, 11, 12 and 13. He has now very reluctantly started meditation but so far only feels worse…It feels reassuring to be able to connect with other people going through similar to me

[Cassland]

Hi there. My husband was diagnosed at around the same time and I’d love to chat. Today is the first day I have decided to link with people in a similar situation.

[Reah]

Hi @Cassland,

Welcome to the Parkinson’s forum.

It’s great to see that you’ve jumped straight into this thread and showing support to other members. Please let us know if there’s anything you need support with.

Best wishes,
Reah
Forum Admin