Coping


#1
How does one cope with the grieving of watching your other half slow down, and have difficulties? I find that once I've come to terms, something else happens (he is deteriorating quicker than I'd like to see) and so I am constantly battling to keep up emotionally. Yes, the meds are increased / added regularly,and he has good monitoring, and yes, I'm on the anti depressants - but its still hard. I'd like to know how everyone else copes.....

#2
Dear dinky I know just how you feel it is with out doubt the worst part of the awful journey of Parkinson's trying to stay strong and keep smiling when you just want to scream why is this happening to us . And also the feeling that things are moving on far to quickly and where is this going to end . And to tell you the truth this helps a great deal the careers on this forum have been through almost every thing we have and much more , and for myself when you read there posts and recognise the same symptoms and the same feelings that you experience it some how makes you feel less lonely and you can also pick up tip's from them that you hadn't thought of and think I might give that a try. In short I think I am saying it is a bond we all share and that we are all there for each other on a platform were we can say what we like let of steam and cry a little and then push on to the next hurdle we can do it together . With much love to you and all the others you know who you are .Tupps xxxxxxxxx

#3
Thank you Tupps - and all the others who understand. It is a huge relief to find you all. Today I am sad - he has phoned to say he will be late home from work - and its getting later and later as he is slowing at what he does. Meanwhile I do all the hous-ey stuff like watering the garden (something he used to do)so he can rest when he gets home. The differences just make me sad. He is so slow at everything - eating, getting things out of the fridge, doing up his shirt, shoelaces, (how on earth do you persuade someone to go for Velcro without making them feel 'disabled'?) helping me change the bed sheets, I just stand and wait... and feel sad. I can't say anything or he feels criticised coz he is sensitive about it all. But I look for things that he can help me with, so he doesn't feel useless..... Sorry, just having a bit of a gloomy patch. Dinky.

#4
Thank you Tupps - and all the others who understand. It is a huge relief to find you all. Today I am sad - he has phoned to say he will be late home from work - and its getting later and later as he is slowing at what he does. Meanwhile I do all the hous-ey stuff like watering the garden (something he used to do)so he can rest when he gets home. The differences just make me sad. He is so slow at everything - eating, getting things out of the fridge, doing up his shirt, shoelaces, (how on earth do you persuade someone to go for Velcro without making them feel 'disabled'?) helping me change the bed sheets, I just stand and wait... and feel sad. I can't say anything or he feels criticised coz he is sensitive about it all. But I look for things that he can help me with, so he doesn't feel useless..... Sorry, just having a bit of a gloomy patch. Dinky.

#5
Dear Dinky
My husband has had PD for 11 years but has now got PD Dementia. It is so hard to cope with sometimes. He sometimes doesn't know who I am or he wants to go to work ( he hasn't worked for 11 years) he doesn't know where anything is.
I have cried, laughed. Sometimes I see a glimpse f my old husband and I cry with delight. Each day is different. It's hard and emotional. Hang in there because your husband would do the same for you if the tables were turned.
God Bless you and keep smiling x

#6
Dear Dinky and hello Tupps,

I haven't been on here for a while but do understand exactly how you feel, my husband has had PD for well over thirty years now and is 70 this September so it has been a long haul for him and our family.
I have said for many years that I only have about 10% of my old husband and PD has the rest, bless him he is still amazing although now in a home for the last three years due to his challenging behavior. He can be very calm and funny but can suddenly change to very cross and I mean very cross.

For myself we had such a close relationship it has been very hard for both of us but just lately I now know what people mean when they say they have died of a broken heart as the last few weeks have been even harder than anything before, it has passed now thank goodness as we all have to keep going for our spouses and family, also my husband had to go to hospital to see if he needed an operation but thank goodness they have said his is not strong enough and the condition can be managed for the moment.
You spend you life on a roller coaster of emotions which can really wear you down, so you have to find things that can help you keep going. The problem is that the very nature of the condition is so long that it takes its toll on everyone.
I swim and have joined a singing group but strangely have found going to church too upsetting and haven't been for about nine months now.
Please remember you are not alone and if you belong to a branch do encourage them to have a carer's day as this can a real help just getting together.
All the very best
vivian

#7
Vivian . I have just looked in on this thread and saw your comment . I did get your reply from the last e mail and feel ashamed not to

have replied . I will be in touch , I am sure you do understand how , because of the situation we are all in , One way or another , our good

intentions can can out of the door .

I will message you later ..You have been such an inspiration and friend to so many on here I am sure .

#8
dinky

For the most part I don't cope. I drive to a supermarket car park and have a good talk to myself and a good cry. It doesn't improve anything but it helps get the frustration out of my system that I can't and won't allow to manifest itself at home.

#9
Hallo all who try to cope,
My wife is 91 and had to go into care home after being discharghed from hospital in January.
Pd has taken almost all her mobility - can't stand or walk- can't turn over in bed.
Just about helpless - but, sadly so wide awake mentally.
she can't understand why we can't be together in our last years - asks me questions that break my heart.
I have been visiting her almost every day since she first went into hospital last November and the daily stress has finally caught up with me.
So, yes , I cope with living alone - hate coming home to the empty house - miss her every minute of the long evenings.
Where do I go from here?
Sorry for sounding so sad but that's exactly how itis.

#10
Hello everyone

I'm very sad to read all of these stories about the difficulties of coping with Parkinson's. I am new to this forum. My husband has had PD for 6 years now and I can certainly understand what it's like to live on an emotional rollercoaster! One day I am really happy because he seems like his old self, and other days he has so much difficulty coping with sleeplessness that he seems to be in a dream world. I sometimes feel very alone because we do not have any children and my family is in Canada. I love my husband dearly but living with PD is very difficult. I also have a very busy job which I can't give up because I am the sole breadwinner.

Maggie

#11
Maggie,
My husband has had PD for 5+ years and I know the feeling of being alone with it. In the beginning I was just focussed on his meds and I was working, so it was easy to not dwell too much. I was glad to retire (it is tough working, and keeping everything together), but I can now see how my husband's personality has changed. We cannot communicate as we used to and he falls asleep so suddenly just watching a TV programme together is a challenge. I have a son near to us, but my daughter and granddaughter live in Australia, which adds to the feeling of coping alone. I am planning to get in touch with our local branch, as someone on here said a carers day is a great help. It helps knowing others are living with this horrible condition and finding ways to keep cheerful. Kas

#12

Hi all,I have had PD awhile now,I should feel lucky I have my OH and older son living with me.I can only do a little as I have COPD as well so my energy levels are very low, most of the time  I get depressed thinking everyone thinks I am lazy but after reading previous comments I feel a bit uplifted It is not just about me but all of us family,friends and other PD sufferers we all have our problems and it does make you feel better reading how others cope thank you all for being there xxsmile


#13

I am speaking as a person with Parkinson's and I know how difficult it can be:

A lot of focus in Parkinson’s is on what is taken away by the disease because this has the greater emotional impact. But little attention is paid as the disease progresses to what remains in place. There is disability within Parkinson’s for sure but there must be ability within Parkinson’s as well; this is important to acknowledge because our remaining ability can be used to help us develop ways to alleviate the disability.

I believe (perhaps naively, I frankly don't care if it is) that there is space for me within my disease. This thought may be wrong but if I don't think it I will never give myself the chance for that space to open up and my thought to become true.

dr jonny

www.dialoguewithdisability.blogspot.co.uk


#14

My son Stuart was diagnosed 7 years ago when he was 42 years. He stayed with his girlfriend then. On the day he was diagnosed she told him that as a nurse she had seen the worst Parkinson's can be and that she could not cope with that and that they would need to split up and forget their marriage plans. She then told him in horrific detail of what would happen to him. She was persuaded not to split up but went back and forth saying split/don't split over 2 years when she opted for split, but still be a couple, but living apart.

Heartbroken. he moved into a house on his own. His condition deteriorated fast. I am his 70 yr old mother living 2 miles from him. He had to give up his car, licence, golf, fencing but was able to work from home 4 days a week. The girlfriend continued to blow hot and cold. She spoke of PD continually. He was saying to her "I am NOT just PD. I am me as well !" In the end he refused to let her mention PD as all comments were SO negative.After another 3 years he ended the relationship as she clearly wanted out and he was falling out of love then.

He had very bad symptoms, falling, tripping, hands clawing, insomnia etc.I was running over at short notice day and night. At one point a PD nurse gave him double the doze he should have had which caused more problems and took 4 months to get over.

All through this he had depression and stress and felt suicidal.His bosses were great though, but his long absences and regular inability to work at no notice must have been hell for them. Fortunately he is good at his job and valued.This led to financial problems but I was able to help there.

As the stress and depression faded and he was no longer emotionally attached to his ex-girlfriend, he became more stable health wise. I am sure all the stress he went through PLUS her dire warning were in part responsible for his fast decline. We are a small family. Just me locally , his sister is 300 miles North and brother in Australia, BUT we are all very positive people and have had to drag him out of a negative thinking mode he had picked up.

At the beginning of the year he got a rescue cat Riley, then 9 months. They adore each other and as the house is in the countryside, he has got rid of all the mice that had moved in and damaged wiring and pipes.A great wee character with no bad habits.

My grandchildren came over from OZ recently and Scott 11 years really hit it off with Stuart. They both have the same sense of humour. They are now playing computer games from different continents.

Life has improved now and he had not been off work for 4 months. He copes well now with work stress. He goes out with mates more.He belongs to CAMRA...the real ale society and they go were the beer is best !!

I have redecorated his house. It looks great. We went on holiday to Harrogate and Gran Canaria.

I belong to the local carer's group. Lovely support. Got a good GP too.

He can have bad days and sleeplessness is an ongoing problem, but his walking has really improved,        I have been on the antidepressant Citalopram for years and it really helps.

Keeping him "UP" is  the main aim and that keeps me up too. Sorry I have gone on a bit but I just wanted to say that life can get better and focusing on the positive is vital.Aim to build your life up, Both of you.Even small things all add up in boosting your moral.


#15

Hello Dinky

I haven`t been able to reply before because of computer problems but you might like to look at the parkinson`s shop, button at top of the page.  It has a lot of useful gadgets particularly shoe laces that twist together.  They might be more acceptable to your husband than velcro.

Could you tackle the problem of him being slow with helping by asking him to do something he can do on his own, albeit slowly, while you whizz about and get other things done?

Perhaps you could have a discussion with him about the fact that parkinsons means changes to your life as well as his and how you can make adjustments that benefit both of you.  I know that I do much more now that he used to do but if that means we can have more time to do the pleasure things together we are both satisfied.  At the moment we are experimenting with how we manoeuvre him to get in and out of the bath, we`re not there yet but working on it together.

Hope you feel better about things soon

Hatknitter


#16

Hello again Dinky

I had another thought about your husband coming home late because he is slower at what he does.  Is his employer aware that he has parkinsons?  He must not be expected to work longer because he is slower.  Employers have to make reasonable and suitable adjustments for disabled employees and this can include reducing their work load.  

Best wishes

Hatknitter


#17

Hello dinky

Ha ving read your post and the replies I see we walk the same road , its hard and will become more difficult as we age but if you read every post on this forum you will see you are not alone , there are many of our friends out there suffering so when in the darkest hours and hell decides to visit as it will , it always seems worse in the early hours of the morning crawling to the toilet when almost95%  paralysed, we know you are in distress and will share your pain, there are ways to delay combat or  defeat the syptoms of PD I have been to hell and back fighting BLACKHEART so I sympathise with all of you and there will be times when you bend and crumple under the heavy blows but you wont break you will find strength you never knew you had and when the storm passes grasp the precious moments of normality and cherish them you can do it , often you will stumble and hurt will ravage your lives but face down y our terror and fear use every possible weapon available talk to your Consultants and Nurses there are ways and means to make your life better Its not a smooth ride but you can make your life better but its a case of Forwarned is Forarmed so learn research ask chase up information when you are fighting you are not failing .

                                                      Kindest Regards            Fedex