Hi
Have posted on here before but need to hear some love and support.
Basics :symptoms for 10 1/2 yrs, DX 6 1/2 yrs ago, doesn’t tolerate meds or med changes. Kids aged 10 and 11. Has spinal issues on top of PD
So, hubby has really found the last few months hard to cope with.
He hasn’t eaten properly since the end of April since he had what I thought was a dramatic stomach bug, but haven recently spoken to his PD nurse may have been overflow
his sleep is all over the place. Sometimes he is asleep at 8pm, some days he’s asleep 18+ hours, some days he can go with only 1hr sleep in 48 hours. All days awake at 4am
he will not leave his xbox/tablet games alone. He’s really vocal and sociable with the people on them but barely speaks to me or our kids… he falls asleep playing the game and gets quite defensive if I try and take the handset off of him because he is asleep.
REM sleep is all over the place
he is complaining of feeling like he is losing control of his hands
hasn’t left his bed other than for toileting/washing since April, before this would only get up to eat his dinner.
All of this, on top of working full time, looking after our kids and house is draining on me. I can’t remember the last time he spoke to me as a wife, looked at me as something other than his servant.
I have no desire to do anything in the house or with the kids, I can’t be bothered to do anything I love doing - can’t remember the last time I read anything. I need to decorate the lounge, weed the garden, wash the floors etc but have no energy or will power to do it. TBH I feel like I’m losing myself.
I have no relatives around who can help nor friends. He won’t let people in, refuses any help from anyone and argues with me when point out he is asleep playing his game/eating etc.
I don’t know how much longer I can do this all.
Note:I spoke to the PD nurse yesterday who thinks his symptoms listed above are bowel related, but that doesn’t help with me. Everything I do is linked to him or the kids. I’ve struggled to move my arms this week because I am so worked up/run down etc that my shoulders have gone into spasm .
I know you will all say I need to go to the docs, but I can’t see how that will help - I cant be signed off, I’m one of the few members of my team who aren’t on mat leave, tablets don’t agree with me, if he wont accept people in the house, I can’t get support. If I suggest that I go and sleep in the lounge he gets arsey, so I’m in between a rock and a hard place. My work has offered me counselling but I need a target to work towards to allow me to access it - wtf can that be??? The kids go back to school soon and I haven’t even got before and after school care so I can do my job around them because of the COVID rules - the whole universe seems to be conspiring against me at the moment.
Goodness me, I am exhausted just reading your post. Two things immediately sprung to mind first, have you had a carer’s assessment? That is an assessment about your needs and is separate from those of your husband. Second have you tried ringing the helpdesk? They may have some ideas or help you sort out priorities - my feeling is that you have so much on your plate that you hurtle between on thing and nother
I thought I had it bad but my heart goes out to you, no wonder you are struggling. The advice above to get a Carer’s Assessment is most important. You have to get some help, maybe Social Services or your GP could talk to your husband and persuade him that you need support, for the sake of you both so you can continue to care for him, but also, importantly so you can give some time to your children. Good luck.
Apologies but some of my edit didn’t make it! Got a few issues with my internet at the moment and having to make do with the mobile which is not the easiest thing for me to use. What I was saying is that it feels like you are so busy hurtling between one thing and another trying to do your best by everyone (and I should add for which you have my total respect ) that you are now running on empty so it feels like it is all falling apart. Fact is no-one can run on empty and if you do you’ll get ill then what happens to all of you. It is very important that carers look after themselves and however hard it may be please stop, take stock and get some kind of help and support. I’ll be honest don’t think it will be easy for you to introduce change given what you wrote but I also feel I am not saying anything that you don’t think in your heart of hearts. There’s no law that says a wife or indeed any family member has to take on the caring role and in my experience most do not fully understand what a difficult demanding relentless and utterly exhausting role it can be. It’s no failure to admit you can’t do it all, no-one can, and you like all of us, will have a limit to what you can take. I hope your post on the forum giving you an opportunity to offload helped and feel free to do so whenever you need, but please however hard and daunting it might be please do look into getting some help for everybody’s sake. Let us know how you are getting on. I send love and hugs, I wish it could be more.
Dear @10kmk, I’m so sorry to hear how you are struggling at the moment, I’m sure other family members and carers on our forums can relate to your experiences, and will offer you love and support as @Tot and @SueM have already done.
Our Information and Support Services are here to support everyone living with Parkinson’s, including family members and carers. Do contact our Parkinson’s UK Helpline and Local Adviser service for a confidential chat and advice.
There are also carers support services across the UK that can provide you with both emotional and practical support, you can search for your nearest service on the Carers UK website here. As well as providing an understanding and caring ear, they can advise you on getting a carers assessment and identify other support services in your area, including any opportunities for independent counselling services. Your GP should also be able to refer to you to services that can help you manage and cope with the stress and worry you are experiencing.
You might also find Relate services useful, they are still providing councelling and other services by telephone and online.
What time does your husband take his last parkinsons tablets at night time as if he’s taking them just before or a hour before he goes to bed he might be switching ON and this could be the reason why he’s not sleeping a good time is say if he goes to 10.30pm and takes his last .meds at 8pm it takes roughly a hour to switch on last about 2 to 3hrs if he’s lucky his pd meds he should be just about going into the OFF ie his brain won’t be so awake letting him have a nice sleep. Hope this helps a little.
10kmk my heart goes out to you, i thought i had it bad, at this time its very difficult getting support from outside bodies, we havent spoken to the PD nurse for months. All i can say is try keep your chin up, not easy when you are drowning i no. I am sure you will get some good advice.
Sending a big hug
Hi @10kmk,
I find it hard to imagine how you are managing to cope - and yet clearly you are, after a fashion. Extraordinary. Your husband is one lucky man - if only he could see that. To my ears it sounds like you are completely and totally exhausted, mentally, physically and emotionally - and possibly depressed (who wouldn’t be?) and in that state, it is nigh on impossible to think straight and to see clearly a way through the jungle you are in - which is where other people have a role - to help you see a way forward (using their calm, objective, uninvolved minds to help yours to think) and to support you in taking it. The trouble is - you need to talk to them and then take their advice - no-one can do that for you - that is the really tough thing - to take action when it is the last thing we feel we have the energy or motivation for . Whilst everyone (including myself) will greatly sympathise with your situation and wonder how on earth you are managing to get through a day let alone a week and more, none of that makes any real difference to you - and what is needed is practical action - whether immediate stuff (sleeping in another room) or longer term (like getting the carer’s assessment etc).
At risk of stating the obvious (but maybe the impossible), you need to be getting enough sleep (and owe to yourself first and foremost - you do matter too you know - and then your kids and your job to try and do so) and if your husband is not happy about you sleeping elsewhere in the house maybe that is a short term conflict which will settle once he realises that you are serious and that getting “arsey” with you isn’t going to make a difference - a bit like not giving into a toddler’s tantrums.
I hope you will keep posting and know that people are rooting for you .
Pippa
P.S. you do not in fact need to decorate the lounge or weed the garden - though I can imagine that if they are really bad, you will beat yourself up for not doing them - but please cut yourself some slack!.
Hi all,
Thank you for your kind words.
Yes I do need to put myself first but it’s hard (as we all know).
On a good note, the bowel meds are starting to work on hubby so his meds are starting to work, I do need to get a docs apt, and I’ve put that on my ‘to achieve list’ so hopefully I will make that call before the weekend,
I really appreciate your replies. Knowing I’m not alone is such a huge thing. Thank you🙏
He takes meds at 730, 12, 1600, 2000. If he takes the last dose earlier his meds for REM sleep disorder stop working too early, if he takes them later his pain meds don’t kick in. It’s really hard balancing all the meds needs for the comorbidities that he has,
Thanks Pippa,
Stopping and cutting myself slack is something I am learning to do, very slowly that is!!! Being from farming stock, we don’t give in - but you’re right. I need to I have defo hit that wall.
You could ask your pd nurse for a add on drug like amantadine to keep the drugs in you system so you don’t have no wearing off periods, also a lot of people do well on introducing azilect one away, and finally if he finds it hard moving in bed could ask for a slow release for bedtime hope this helps
Sorry should have said entacapone to keep your drugs running smoothly so you don’t get so many off periods Amantadine you take if you suffer with dyskinesa while on drugs, just phone pd line and they will help you with the best options. There are a lot of drugs that can still help
Hi Gus, he reacts to amantadine at a useful level and entacapone is a BAD combo with the other meds he takes. We are kind of stuck with being slightly under medicated because of the huge cocktail of meds he takes for various other illnesses. He either has severe reactions when he gets to a useful dose (e,g. Last year we tried upping his madopar, he reacted and now can only take a partial dose with high strength antihistamines) or cant take because of combos.
I think that makes it harder to deal with because I know everything could be managed better but we can’t get to a useful dose.
As he tried Azilect ie rasagline another of people respond good on this also there is another new drug been out a couple of years works like etacapone but you only take one tablet a day as he consired dbs
Hi
Has tried rotigitine, amatriptaline, ropinerole,
Uses mafooat
Cant use entacapone (or any related), selegiline (or related)
Any drug that us less than 4 yrs old is not paid forby out ccg. Hospital is in a different ccg and so drugs is a big battle
.
That’s so wrong a new drug is meant to be used, i would have something to say about that what’s the point, thought pd drugs were trying to get rushed though the system faster
Hi. As an occasional visitor to the forum I have just read your post. My husband has pd and from time to time I find it helps to hear others experiences, to understand a bit more about this Parkinson’s journey.
However, my heart just totally went out to you when I read your post. I am not working and my children are grown up, I have a small holding and too many animals and an ex-farmer husband who hates that he can’t do the things he used to do and has withdrawn from life. I totally get what you’re saying about tough farming stock and the exhaustion etc. It’s a 24/7 on alert role, I’m always tuned in either consciously or unconsciously, to his every movement, sound etc as I evaluate his safety and symptoms and well being.
However, this isn’t about me apart from to say that I’ve overdone it now and have had a few health problems and now I’m having heart problems, because I am borderline emotionally exhausted and a few difficult days push me over what my body can find the energy for. What makes a big difference to me, is to sleep in another room whenever I need to get a rest. I didn’t want to, it’s sad, I want to be in the same bed as my man, but when I get in that spare bed I can relax. I feel the tension leave me. Sometimes I pop on a 5 minute meditation from you tube and I really focus on it. You have to get selfish. I was being told to get help etc but it’s so difficult and draining. But now I have to look after myself cos my heart ain’t happy! With care and understanding to you both, let him strop. Getting better sleep has been pivotal for me. I make sure he has everything he needs before I clear off to the spare room and I do get up to him in the night if he needs me as I’m only across the corridor but in the spare room I cannot hear his breathing patterns or feel the tremor and therefore my senses quieten and I can save some energy for myself.
As your post was earlier this year I would hope that things are better for you now. Thinking of you x
Please get help…there are many excellent suggestions here.
I would read the impulse control posts…your husband’s addiction to computer games and change in behaviour suggests he Is in the grip of the drugs he takes for his Parkinson’s.
I would ask for an urgent meeting with his Parkinsins nurse and neurologist to look at this possibility.
Act now!
