Just having a bit of an offload!


#1

As there's nobody about to talk to..... yet again..... I decided this might help. It's the feeling of absolute loneliness that really gets to me. Everyone around me seems to be getting on with things and I'm sitting here while OH is asleep again. Don't get me wrong I don't blame my OH in any way but I do feel that the rest of the family are walking around with blinkers on. Because they don't really see the bad days they don't take me seriously when I tell them they need to spend time with my OH. I can see his memory fading and his confusion when waking up and his mobility deteriorating faster and faster and all the other problems that develop. I am going to end up getting so frustrated with them that I will end up upsetting a few people but you know what I don't really care anymore after all I'm not their carer........ feel better now there's a lot to be said for a good rant!!! wink


#2

Offload and rant as much as you need, kooky. Wish I was a brave as you to start such a thread.I know exactly  how you feel.


#3

My beloved husband has PD for 20+ years,  He was doing great for the first 15 years, started on Sinemet, then about 9 years on Stalevo which worked well but eventually run its course.  He was then put on Madopar which has been good but is now taking 250mg X 5 a day.  He never complains though he has difficulty walking now and experiences pain in knees and legs.  This keeps him from sleeping at night so he is in and out of bed all night.  He needs help getting in and out of bed and with dressing, washing etc.  He sleeps a lot during the day. Needless to say I find this all very difficult at 75, especially the lack of sleep at night, as I am busy during the day with cooking, shopping and other duties in regard to my husband and disabled daughter.  Were it not for my faith and the help of God I don't know how I could cope.  But so far so good.   Sometimes I feel that my life is passing me by when I see all my friends and relatives going on holidays. The lack of sleep is giving me arthritic pain which adds to my fear for my future health.  Let's all pray for some medical breakthrough for this terrible disease!


#4

 

I can really sympathise with you all, I am a PD sufferer myself, and it is just as hard for the carer as the one who has PD, it's a tiring and thankless  task caring for someone with this awful disease. I know my OH is a different man to the one I married, he looses his temper more, and his attitude changes from day to day. I'm sure it is down to sheer frustration when he can't help me anymore than he does. I am so thankful and try to tell him most days but it still does'nt help the way he feels inside, and seeing me deteriorate over time.

Regards Sheila x 


#5

Hi Una,

As a carer for a disabled daughter,, you may already know your way round the system but it does change.  Carers' rights were strengthened this year and you are entitled to an assessment of your own needs if only so you can continue to care for your family .  This link summarises the present situation.  My own county has very good carer support in place and yet only a minority of people have heard of what is on offer despite our efforts to reach them.

https://www.citizensadvice.org.uk/relationships/looking-after-people/carers-help-and-support/

"The carer’s assessment is normally a face to face meeting with a trained person, either from the council or an organisation it works with"

 

 

 


#6

Eileenpatricia

Thank you for your reply.  Had carer's assessment done a few years ago.  The help I would need would be from 3.00am to 6am.  Also lifting and pulling, especially in the morning .  The rest, help with washing and dressing, I can manage if I can get some rest.  I do not know if I could get help during those hours.  My daughter will soon be moving into her own apartment with support.


#7

Hi Una,

That's good news about you r daughter. .   The 3-6am shift is a hard nut to crack.   Will you be able to catch up on sleep  in the daytime,, once your daughter is settled?  Not everyone can sleep in the daytme no matter how tired they are.   I know of carers who use a sitter just to catch up  on rest and to have a bit of    "me time" without  even leaving the house     I was awake and up  at 5.30 as I often am and  am now  completely addled and I have only myself to look after .    Hope  you find a solution to the lsleep problem 

Best wishes, 


#8

I cared for my husband who had PD and dementia until his death three years ago.  It was hard, very hard.  My lifesaver was regular respite care.  For the time that he was away (usually one week in six) I could rest and do things just for me. I was then refreshed and able to be a better carer.  I was lucky that our local authority provided a good centre where I knew he was well cared for.   The respite care was the only help I had but that was our choice.  I found that with that regular break I could otherwise cope on my own. 

I urge any carer who is struggling to investigate opportunities for respite. If you don't look after yourself you will not be able to look after someone else. 

W

 


#9

I've just read through all the replies on my post. Thank you all for your comments. Sorry I haven't said so earlier but things have been difficult. My hubby has now been told he has dementia and is seeing a psychiatrist for severe depression but I am going to look into respite care.......take care all xxx


#10

Thank you all for your replies to my post.   Things improved for a while but my husband is now recovering from a chest infection.  His walking, even with a travelator, is very bad.  He is on his second dose of strong antibiotics and today surprised me by jumping up, walking across the room, did a twirl and walked back just like the PD had gone.  I found this happened for a while the last time he was on antibiotics.  There must be some connection that could be researched.


#11

We are now into 2017 and things have not improved.  My husband goes to bed about 10pm but is up at 2am or thereabouts.  We have a cup of tea and back to bed but up again about 3.30 am with pain in legs.  This continues until he goes to bed again around 6.30am.  He would then sleep until 10am when he gets his second dose of Madopar.  He needs help to get into and out of bed.  I sleep from 6am till 8am usually and feel worn out as I am busy during day and have no other family members except my daughter who also needs my attention.

We have tried painkillers but they don't help very much.  We tried sleeping tablet but he still wakes to go to toilet at 2am and still affected with sleeping tablet has to be manually lifted with great difficulty from bed to travelator or chair (with wheels) and taken to bathroom.  Sometimes has accident and requires change of PJs. He never complains and it must be terrible for him.

We don't know where to go from here.  Any suggestions, anyone experienced this?


#12

I wish I could help but I don't know what will help with the sleeping.

Your GP can prescribe Melatonin which is a natural hormone and gets you off to sleep but doesn't keep you asleep and has no after-effects.

As for the loo, we gave up on trying to get to the toilet. We bought my husband a wee bottle from Boots and it is so easy to get it from the bedside table, flick the lid back, wee , put lid back and go back to sleep!

Maybe this would be easier..

Good luck..

Love

GG

 


#13

Thanks for your post Goldengirl.

A few days ago my husband was prescribed Lyrica 25mg x 2 daily for the leg pain.  It was working great for 5 days, no pain and sleep improved.  A miracle !  At last some respite and a hope for some normality in our life.  Then the  GP increased dose to 50mg x 2 daily.  After just one day on this dose he has severe pain in his neck, no pain in legs but trembling all over.  Going to reduce Lyrica to 25mg x 2 again but will need to inform GP.  


#14
Hiya...just wondering how long does it take to accept PD? Husband is 6 months diagnoised now..still burying his head in the sand..pretending it will go away. Refusing to tell anyone,HR know at work as he drives as part of his job and had to tell them. Wont tell his colleagues,gets loads of heavy work given him as younger colleagues refuse to do hard work! They admit it too! No risk assessments done by HR....driving me mad as he wont try and help himself.Therefore I have to watch the decline at home..tells me "its not my problem and why do I worry?" I want to scream and shout but no one to talk to...all my friends have their own problems..and my Sons/Daughter in Laws just ignore their Dad has PD!!!! Will my husband ever admit he has PD??? Help please?

#15

Hi babesbrown,

I'm sorry to hear that your husband is struggling to accept his diagnosis. In terms of his work you might find our employment and Parkinson's booklet helpful, you could download a copy or order one which might be good to keep at hand as it has lots of information about reasonable adjustments and advice on talking to colleagues.

The forum is a great place to find support and talk to others who have been in a similar situation. Please do remember that our Helpline advisers are happy to have a chat and offer support and advice, and they can also put you in touch with our Peer Support service on 0808 800 0303.

Best wishes,

Joanne


#16
Thankyou Joanne.....when I mentioned to a friend previously about PD support forum etc...she said "why would you need any support? its early days since your husbands diagnosis....save yourself for when you really do need help".....that comment in itself proved to me how little people know about PD and its affect on everyone involved......

#17
Hi babesbrown, You must be so frustrated. When I first was diagnosed last year I decided to keep it quiet for a while. It only stressed me out trying to act 'normally'. This only makes things worse. Over the last year I've gone through several different stages of acceptance. Telling people was hard. They look at you differently but it was a relief. I know it's effected my OH and children. You sound like a supportive partner. Maybe a family meeting to get everyone on board? Carers need support too.

#18
Divine R... Thanks for your reply. I dont think people,family or my husband see me as a carer...if I am honest I dont really think of myself as a carer. I have always worked in "the care field" so cant seem to define myself as a carer to my husband yet. I still work myself and other days I care for my grandson whilst Son/DIL work. I work very unsociable hours(nights)to fit in with everyones needs.Some days I want to shout and say "Hey what about me?" I fit in with you all...think its pure frustrtation of not being able to actually say what I feel for the fear of upsetting others....just bottle it up inside me.My husband is asleep by 6.30pm most evenings now as he gets sooo tired...oh,how I wish I could turn the clock back 30yrs...this is meant to be our time and I feel PD is robbing us of it...we had plans for our retirement in 5 yrs time but at the moment dont feel we can plan ahead very much....my husband wont talk about anything related to PD.......sorry to rant but I am one frustrated person at the moment........x

#19
Hi Babesbrown, I think we're quite alike, except I'm the one with Pd. I'm 51 and my OH is a few years younger. My sons are just teenagers. I feel such guilt at bringing this on them all. Not my fault I know. But there may be that element with your husband. He's trying to act normal and be strong for you. Of course it's having the opposite effect. I've realised that life is just different now. You can still have a lot of plans just plan them differently. Your husband is still active obviously but fatigue is all part of the Pd. Just thinking about a days work can exhaust you. Maybe you could talk to someone, a Pd nurse etc. Sometimes they help families. I don't know if I'm helping but I do understand you.

#20

Hi BB

Hope you have managed to find a little time just for you.  Its important x