Hi my husband has PD he’s had it for about ten years. he sleeps a lot. Can’t concentrate and doesn’t speak much at all. Sometimes it really gets me down. He now has bladder and bowel problems. I’m tired and don’t get as much sleep as I would like. This is my first time on this forum. I would like someone to talk to. I think it would be nice to share.
It sounds like you have your work cut out for you at the moment.
I really do empathise with you as I have a Neurological condition that seems to change diagnosis with each different consultant I meet however that is neither here or there as I am also a full time time carer for my wife who has a list of conditions too many to mention besides it would upset her if I put it in the public domain.
But I do get times of feeling resentment and of course personal guilt for feeling like that.
I’ve suffered severe insomnia for the past three years and at the moment I have Aspiration Pneumonia.
Sorry I digress, in my caring role I have learned to make some time for me.
Just simple little things like finishing the boring household shopping and then going back out with no trolley as I can’t carry bags.
So going to buy myself something as a little reward or even just looking at record shops or tech stuff without all the lists and stuff is a simple way to get me time and push all irritating stuff away for another day is for me relaxing.
Hi Lindy my husband don’t sleep much either and I know how exhausting it can be, especially when you have to put a brave face with a smile for the rest of the family . It is hard work, my husband don’t deal with things well and is suffering from anxiety and depression at the moment. Yes always good to share time with someone. Unless like me people who you thought were friends think illnesses are catching and don’t visit anymore. Small minded people, you always find out who your true friends are and at the moment still looking
Hi Tommy. Thankyou for sharing. Sounds like you have a lot to deal with. You are doing the right thing in finding some time for yourself. Think I’m a bit low at the moment. It makes me feel a bit better just to know there’s others out there with similar problems to deal with.
Hi Nettie I know exactly how you feel. I now don’t see anyone. There like rats deserting the sinking ship lol. I think people think we are to much bother. I am a bit low at the moment. Just got to pull myself together. It’s good to talk to someone who deals with similar problems. Starting to feel better already. Lindy
Hi Lindy and nettie.
I have been booked for an 8 week mindfulness and yoga class.
Don’t even like dairy.!
The point being I’m going to attend as even if I gain nothing I will still have had 9 whole days me time (selfish old sod) I know.!
Thing is they have sent one of those psychological questionnaires.
One of the the questions asks how many times a month do I socialise with friends and family and how much do I enjoy it.?
What planet are they on,? don’t they know we are either contagious or invisible to our families now. LOL
Hiya; as a person who has this horrendous Parkie and has had for 12ish years, I have nothing but the utmost respect for all carers/spouses. I get on my own nerves so goodness knows how my poor husband feels. He never knows if he is coming home to angry, upset, paranoid, anxious or very occasionally lately “normal” wife. I cry most days, cannot cope with anything, at my wits end and wish I was’t around so he could be free. I don"t sleep or anything and I just want myself back and the good time girl I was pre Parkies.
Hi littlemix worry
That little bit of your post
(I get on my own nerves)
Speaks volumes about you.
The funny good time girl is most definitely still there…
My dad was the same. See “coffee as an aid”. It genuinely works (for him). I can tell how much he has had by how able he is to move/talk etc. Getting meds right, hydration. Having pee bottles easily available. Finding reasons to get up each day, a wee journal, music, pictures/videos of anything of interest.
As everyone says, take time for yourself (which never seems possible but is). Sometimes, even 5 minutes of proper deep breathing from the diaphragm helps.
I also agree re friends (& some family members) deserting but at least you are then not wasting time and energy on someone who obviously doesn’t deserve it.
Good luck, genuinely, use the helpline, look at other things on the forum, you are not alone. Take care
I know how you feel as I feel the same, just when you think you’re getting on top of things there’s something else there to hit you back down. I try not to let things get to me and take each day as it comes try to deal with it and put it to the back of the list. I try to smile especially when I see my grand children so they think all is ok. Because they are the best things that keep me going . If you ever want anyone to talk to you can always get in touch as we all always someone even just to have a rant to manage the rest of the day
Hi tommy. It’s good that you are getting time for yourself by going on the course. Everyone needs a rest now and again. I’m sure your wife won’t mind. As long as she knows you’re coming back. lol. Xx
I’m not quite as confident on that one
Maybe she would get the flags out if I didn’t return. LOL
Hi Nettie thankyou for being so understanding about needing someone to talk to. Tiredness is a big problem. I get woke several times during the night so some days it’s hard not to be a bit short tempered. I thought it was just us that were ignored by family and friends. I feel much better knowing we all seem to be in the same boat lol. If you know what I mean. Doesn’t sound right cause wouldn’t wish that on anyone, but hey looks like that’s the way it is. X
Glad you found the forum, I have found it so helpful over the years. I don’t reply a great deal but your input definitely rang lots of bells.
My husband was diagnosed 12 years ago and is very much at the same stage as your other half, particularly regards bladder and bowel problems and waking at night.
I also get bad tempered, especially at night. You feel very mean but sometimes waking every other hour is just too much.
Hubby had a fall and has just had three weeks in hospital after fracturing 5 ribs. They were very good about handling his Parkinson’s meds etc but he has lost his mobility and can’t even use a zimmer at the moment. I dare not leave him so getting away is even more difficult.
My family live 4 hours away and are very good at taking turns to visit, but they can only manage every 3to 4 weeks between them. Must admit that face timing my daughter is a great help.
There was a very good input on the forum a few months ago about how frustrated and guilty we carers can feel. I suggested my daughter read it because it was just how I felt at that time. She said it was a great help to really know how I felt.
I am sure you will find lots of friends to share feelings with on the forum. All the best.
For a minute there I thought you were my mum posting. You’ve just described my dad. He went into a nursing home last week. I can tell my dad is still there when I talk to him but he seems to be always very very tired and suffering from confusion. I have this feeling it is the Parkinson’s medication and it’s basically taking away his life because he is struggling to understand things and asleep a lot of the day. I took the advice from a poster suggesting coffee helps but does anybody else have any solutions ?
I seem to read it as a common theme family members and sufferers observing meds having a detrimental affect. My dad seems to have come to this conclusion too as he has refused meds’ a few times stating “I’m trying to cut down on them”. At first I suspected missing meds was the reason he was deteriorating but now I’m starting to entertain the idea that the meds are creating the fatigue and confusion.
Any guidance appreciated.
Hi jenska. Thanks for your input I bought my husband what I call his bicycle it’s peddles on a small stand. He peddles away while sitting in his chair. I find this strengthen his legs he also puts it on the table and uses his arm to push the peddles round. I bought it on eBay. Hope this helps.
Lindy, great re bicycle, it really helps.
I have started getting dad back on horses, he always rode when younger. Getting on/off is the hard bit, once on he is fab. Not as tidy as he wants to be, so I told him that’s his homework. It gives him something to get him out the house and look forward to. I video it all so he can look back on it. He is now doing exercises each day in the house to build his muscles back up. Recently we even had his giving set attached (in a rucksack) while he was riding, giving him even more freedom.
Still experimenting with delivery of his meds/kale drinks/coffee/flushes etc to get most out of it all. He gets annoyed with extra flushes but dehydration makes him confused/sore etc and if we cut down his coffee he feels the difference. We take it day by day but it’s heading in the right direction and after 5 months, he is starting to get control of his bowels again which really helps his mental state and confidence.