Being a carer


#1
I met my fiance about 9 years ago and shortly after we began our relationship he was diagnosed with Early Onset PD, He was 41 at the time and had been showing symptoms for at least a year before he was diagnosed ( I think he basically stuck his head in the sad and hoped it would go away) I managed to convince him to see a Neuro and it was then that our world seems to have been an uphill struggle ever since.

For the first 4 years or so he coped really well with the medication which has been Sinemet CR & Plus and Mirapex. He went to the gym 4 times a week and refused to let his illness beet him. He was always well presented, clean shaven etc and his diet was impeccable.

Now....it's a very different story, I have spent years researching PD ( hasn't everyone) and know exactly what it will do and have prepared myself for it but at the minute I feel like i am on meltdown. His tablets just don't seem to cut it anymore, he spends most of his time offline and when he's out of the game he truly is out of the game! His appearance has gone to pot, which I can kind of understand and don't get on his case about it but the biggest change is his personality.

I still work full time, as he is now unable to work due to his health but I'm finding it all just too much. I get home to find the house in exactly the same state, if not worse than when I left it and he spends his entire day attached to his phone...for hours and hours on end, or just browsing through the internet. He doesn't sleep now either and so keeps me up most of the night, on the rare occasion he does sleep, he suffers with RBD aswell so I have to watch him incase he hurts himself.

He has lost all his drive, motivation, and focus on life and has developed this "russian roulette" mentality where he will wait and wait and wait to do important things right up until the last possible minute, by which time it's usually too late. He has also started making me feel guilty for working and I often find I'm starting work late or finishing early because he needs me at home. I try soooooooooooooo hard not to get frustrated with him as I know it's not his fault, but I'm so so tired. All I want to do is be there for him and help him but I just don't know how to at the moment. I really think he is suffering from depression but he keeps on saying that he will deal with it ( which he's been saying for the past 6 months) it is no better. I have tried the calm and concerned approach, I have tried the hard approach and it doesn't make a difference.

I'm sorry to rant but I have no one else to talk to about this as he hates anyone knowing he has PD so I have been unable to talk to my family or close friends about this. He has no family left now so I am all he's got.
If anyone has had any similar experiences or can offer any advice I would be most grateful.

Thank you in advance for reading this x

#2
Hi Beth,
I came onto this forum tonight because I'm struggling too... Thanks for your post, it's reassuring to know other people are going through it too. It's hard to get any perspective at night so I've decided I'm going to call the local Parkinson's nurse tomorrow for my own support, about time I did! Do you have one in your area? Other things mentioned to me have been to ring social services and ask for OT appt and carer's assessment for yourself. The anxiety over the future, lack of sleep and emotional feelings about the change in my husband are what I find the hardest so I think counselling will be the most helpful, probably accessed through a doctor's refererral.
I think you're doing brilliantly what with working full time too although we need to take care of ourselves so let's get some support. Reaching out and talking to people is the first step I think, you're so respectful of your fiancées needs but he has to acknowledge your needs too. Good luck with it all.

#3
Hi Beth13

I know just what you are going through. Lack of sleep is so hard to deal with. I have great admiration for you holding down a job too.

As BethJ says though you need to look after yourself - be selfish. You will be no good to your O/H if you crack up. Have you tried talking to your GP. He/she should recognise the danger to your own health and be able to offer some support or suggestions. You could also try the helpline (phone number is at the top of the page left hand side) or Carers UK.

All the best and keep posting.

Worrals

#4
Hello Beth, reading your post I feel so sad that you are so frazzled, it certainly appears that you and your partner need some help.

Depression is certainly one of the numerous symptoms of PD, but it can be treated. I have had PD for 12 years now and following my initial dx I managed well for a number of years without anti depressants. Then it hit me...oh boy was it bad, I can honestly say I was suicidal and looking back I must have put my poor hubby through hell until I was prescribed Venlofaxine, which turned me around completely. Your partner needs to see his neuro, PD nurse or GP, there really is no need to suffer, it is treatable.

Lack of motivation is another symptom of PD and as you also mention changes in his personality and demeanor, it leads me to ask when his meds where last assessed, perhaps they need changing or increasing.

Would your partner come onto the forum or at least look at some of the postings, that way he may not feel quite so isolated with his condition. It is a hard road that we take with this damn illness and it takes its toll on relationships that's for sure, perhaps you might look at the relationships section on the forum, you will see that there are many others in similar situations to yourselves.

I wish you both good luck, please keep posting, it will at the very least, get things off your chest.

regards
Glenchass

#5
Hello Beth,

All the things you are talking about is exactly what I have been through with my lovely husband and what saddens me is that in this respect we started on this road 30years ago and although you at least have the forum to express your feelings we had nowhere, This is such a difficult condition for both parties and a real struggle at times so you are doing very well to get onto the forum to start with.There needs to be a lot more support available locally so as suggested you may be able to see the PD nurse in your area. What we did was have an article in the local paper about the condition and we had several phone calls from others who were in the same situation, so we met at our houses or at a pub, then we started a branch from which I have just last year retired, but they have 178 members (now sixteen years later) even though we live in a small area with a few small towns and several villages.
On a personal basis there is no getting away from it, it is a long hard road both parties take and the way we coped was to keep busy, my husband was a very fit man before pd so he took up several hobbies and had always enjoyed photograhy so he entered many competions and he was successful in winning a lot of first prizes including a national one, he also enjoyed doing the hanging baskets and entered them in local flower shows.
We used to buy any comedy shows on video's or later dvds and put them on when he was feeling low, I have even pulled back the quilt when he just wanted to stay there and got him out somewhere for a drive and then his mood would lift and he would be fine.I know it puts a lot onto you but if you can think of something you used to do maybe that might help. Scrabble is a good one as it takes a while and usually the mood has passed.
He really needs to speak to someone or as suggested come onto the forum and see how other people cope, the first few years when things are reasonable used to be called the honeymoon period my husbands lasted 4years and then as you say it hits you like a sledge hammer and you wonder what is happening, my husbands was such a placid man and he changed a lot so I say I have 20% my lovely hubby and 80% parky but we still enjoy some good times even thought he is now in a nursing home (I looked after at home for 28years), the change in personality is very difficult to come to terms with but the only thing you can do it keep some time for yourself which in itself is hard but take one day at a time and don't be so hard on yourself. I feel very sad that people are having such problems and there is still a long way to go before parkinson's is understood and managed better.
Sorry to go on I just wish there was an easy answer,

#6
Hello Beth
PS is there a early onset group near you or maybe the national office can let you know where the nearest one is, we made so many friends through this group and the branch there is always someone willing to listen. This was also the main reason I started what we called Comfort days in the branch so that both parties could get together but also have a serperate time within the group to share experiences and ideas to help each other. We also had various therapthies ie reflex/manicures massage and healing going on all day to enable everyone to have a turn, throw in a buffet lunch and you have a very useful social event where many friendships are made, they are very popular.
Although the forum is excellant getting together is very important.
best wishes vivian

#7
Thank you so much all of you x I feel a little better today. I actually managed to get some sleep last night as did my O/H! ( Thank you God! lol)
We are speaking to a PD nurse next week so hopefully that will be an avenue for both of us.
Y'know it's strange I often think to myself what would our life be like now without PD, and as I know most of us would say, I wish there was a way to take it all away, but as long as I see the man I love every now and then I can cope with anything. I know I will never get the man I first met back, but the man I have is still the most important thing in the world to me and I will always be there for him, never smothering him, always trying to let him keep as much independence as possible....being an ear for him when he's down, getting his tablets sorted so it's easier for him to take ( Have to say, what dip s--t made the packaging for Sinemet plus! I can't even get the damn things out some times!) just being his Fiancee first and foremost and his carer second.

I know I need to take care of myself and I have told my O/H how I feel as thankfully we can talk to each other about anything so I never have to feel worried about how he will react, bless him he is so understanding.

My only message to anyone who cares would be this, and it's something I have learned over the past few years....never lose sight of who it is you care for. They are still the same person, with the same values and morals, it may get clouded sometimes, you may feel like you want to scream at the top of your lungs at them sometimes, but always always remember you may care for someone with PD but they have to live with the actual disease day in day out, every second of every day. We can get a break....even if it's 5 minutes, 5 minutes of total normality without being dependent on tablets, without wondering how long you've got until your next offline, without wondering what the next ten years are going to be like, I get it now, and that's what makes it all bearable for me. I will find the strength from somewhere and keep going forward x

Thanks again everyone...will keep you posted
Speak to you soon xxx

#8
Hi Beth, your story sounds like a mirror image of what my life is like at the moment, apart from I don't work. My husband takes no pride in his appearance and unless I shower him etc he will not bother , if he can he will wear the same clothes in and out of bed for several days.
I know we are harsh for moaning but it's also harsh on us as carers.
My hubby feels nothing about me doing everything at home. He just sleeps or surfs the net, mainly eBay morning noon and night. He never wants to do anything out of the norm not even socialising with family. I also feel at breaking point, my kids who are all grown up just think I am being horrible to their dad.
A big hug for you and am taking one for myself too:wink:

#9
Beth13,

I have PD and I am 46. I understand what you said in your post.

Apparently your partner is still in denial which means he has not really dealt with his problems. He's not ready.

You should get your life back on track starting by asking him to tidy this and do that...and plan for a holiday. You ask him if he would like to join. If he says no then just carry out on your own with your friends. For some people, they need to learn about themselves in a hard way. Unhealthy toleration may result in your own illness.

PD is not transferable, but depression is. First and most important, look after yourself.

#10
Hi Beth
I am so sorry life is so difficult for you.
I just wondered if you had read the dopamine agonist thread as if your husband is on Mirapex he may be suffering from addictive behavior due to the drug.
All the time on the phone, computer etc is a typical side effect that stops a patient living life normally and stops if the drug is withdrawn.
My husband has been on this path and our life was ruined.
Just a thought. Good luck!
GG
X

#11
Big hugs to everyone !

You cannot generalize because people are at different stages and ages .We all have different characters as well .

I supported my mother who had a very bad stroke ,and saw others who also had strokes but were affected differently . In some ways it has helped me recognise some of my husbands symptons / moods/ etc . My husband also has dreams and hallucinations occasionally and I can see now why my mother said some of the most outrageous/hard to believe things to us ..

Parkinsons and the like are not subjects we learn at school, we don't get to choose them either .

It does sound like one of your husbands problems is depression . one of the many many different symptons .Have you got a good relationship with your GP . Mine is always willing to listen to me , he has taken us on as a package .I usually write a few notes before I go and pass them to him it helps him get a better picture and I dont feel I am using toooo much of his time ..

I have always considered myself as patient but it does test us and we all have our MOMENTS I am sure . WE certainly do . It Must be much harder for the ones who maybe didn't have such a stable relationship in the first place . good to get things of your chests and be honest with each other .

You are all right in saying BE KIND TO YOURSELF AND TRY AND HAVE SOME YOU TIME . It will recharge the battery .

My husband is 77,looking back he has been going through most of the stages for many many years . He has been unknowingly fighting it for most of his life . It just didn't have a name .

At the moment he is sat besides me doing his singing exercises . It certainly helps lifts his and my spirits at the same exercising his throat muscles..

My husband has great difficulty recognising and describing how he feels so we rub along with me sort of guessing lol . At the same time I do search the internet for advice and read all the literature . I normally find the answers ...

#12
Reading this thread I find myself wanting to ask Vivian, what caused you to finally let your h go into the nursing home, was it physical things or behavioural things?Was it his own decision or did you push it? Dont answer if you dont want to,, its just that when I started on this road I decided I would look after my h at home for the duration BUT I may not be able to do that , I might not be able to manage and I was wondering how that happens for other people .Because its a fear that I have, but you are clearly very very caring and capable and he is in a nursing home and the relationship is still ok. If you dont want to discuss please dont but would be grateful if you do want to love Sunray

#13
Hello Sunray,

I don't mind discussing anything as my husband and I have always been open about our problems, I know that this is difficult for some people but during the many group meeting we have been to you always get someone who is really glad that you have brought a subject up that they feel they can't, we feel that if some people don't talk then nobody learns hence you can't sort things out or try to get some improvements to the understanding of PD and the life that goes with it. sorry just realised that it is almost lunch time and our son is coming so I will get back to you this afternoon. best wishes
vivian

#14
Hello Sunray,
sorry this is a long one although I try to be brief
Back again it is difficult to explain all the various problems we had over the years and I to try to be careful when writing on the forum as I don't want to upset anybody, also everyone is so different with how they cope.
Well my husband was a very placid gentle man who lost his mum when he was 9years old so very much appreciated our family life and we only managed one child so we are all very close.
When he was diagnosed he was put on sinemet 125mg and basically find his own level crazy to think like this now. Anyway many people diagnosed at that time developed dyskensia after the first 4years and we used to go to meetings where everyone was arms and legs going everywhere. My husband suffered this for 11years and quite frankly I used to think his heart would give out as they were so bad. He couldn't sit still on any furniture and spent most of the time on the floor. He had a palidotomy, (not sure if thats the right spelling) and that stopped all his movements, they dont do that operation now so far as I know you are awake when it is done so that you can make movements with your fingers for the doctor to check everything is okay. Anyway it was really good and he still doesn't have movement problems now. he was 51yrs when he had the op and is 68 now. We did manage to get a few more hours sleep for the first time in ages but that soon reverted back to about breaks in sleep every two hours.
After that op it wasn't long before he was on an apo pump which served him well for the next 15yrs but in the last couple of years we both decided that he would go into a home while he could take a part in the activities rather than be past it.It was a really difficult time which only lasted 7weeks as he started suffering from paranoia and psychosis caused by being on the drugs for so long and any change can cause problems as well. A 4 month spell in hospital and because that was very difficult for various reasons and he had challenging behaviour, plus my exhaustion the doctors decided he would be best in a home, this we could not find so the PCT agreed that he could come home with 24hour care. Great we thought but although we had some very good carer's the management of these agencies cause no end of problems with changing staff, we had 80 carer's in two years so you can imagine.Never the less he had some lovely times going out with some of them and keeping up his photography etc. Nearly there!
The stress of his behaviour towards myself and the constant changes completely wore me out and our consultant said she would have to make the choice for both our sakes as I couldn't, although of course I agreed I could not go on.
So now he is an hour away from us and we see him at least once every week. Where he is he can go to college two days a week and they have trips out and many events in the home as well.He has been very difficult at times but lovely at others.
We both don't like it really as we were determined to stay together but sometimes you just can't and believe me it is very hard still eighteen months later.
If anybody wins the Euro lotto let me know then we can open a lovely place where people can stay together with all the back up, this is my dream. Please all stay positive as there are many years between all this, but my advice is go the direct payment route and you have more control if you get your own carer's.
best wishes
vivian

#15
Dearest Vivienne That is a very honest and touching story. It is very helpful to me because it confirms what I want to do. I will carry on until someone else intervenes and if and when that happens or something happens I will be honest like you. At the moment all is fine although tiring, but I am probably tired anyway , my husband is the most lovely and patient person although somewhat stubborn. At the moment its more the physical tiredness that I find difficult to cope with but you're story is so very honest and realistic I feel less stressed about the future now. We have got carers coming in and we just pay for those and when we've used all our money on this we will sell our house and then spend that money so we are lucky we have this at the moment . Thank you for telling you're story Vivienne love Sunray x

#16
Hi Sunray,
Thank you for your understanding. I hope everyone realises that to get their affairs in order is also very important as it will make life a lot easier if you ever have to use them.
I am so glad that your husband and you are coping as although very necessary in our case it is heart breaking and a very sad way to live the remaining years of our lives, but we have to make the best of every situation and PD throws different things at you all the time.
best wishes
vivian

#17
I have been browsing through this thread . It's belonging to a huge family

I agree with what you said about winning the Euro lottery Vivian . I have told our friends now is the time that we need it the most .

To put in place nurses when needed a housekeeper and chauffer /gardener occasional SITTER .

We may not like to admit it but it is tiring /frustrating /sttressful for all of us both sufferers and family/carers . Carer is not a word I like to use and I really dislike it when someone tells me how wonderful I am looking after my husband . It's what we have both been doing for each other for 55 years . I am not going to suddenly stop .

I know the day MIGHT come when I will be unable, but nobody knows what is going to happen tomorrow do they . Will face that if it does happen ..

#18
Yes its plan for the worst and hope for the best but then if what one has decided IS the worst then happens there is always comfort in knowing that one has done ones best sunray

#19
Hello Sunray and Jonnie,

Yes you do try to manage at home and we had no intention for it to be otherwise but in the end we had no choice. It has taken me 18months to accept that I could not have carried on and I have times when I think I will get my hucband home again, but I know that it would be impossible not only from my point of view but I wouldn't get the carer's. I know that I did all I could for my husband, much against the consultants advice in fact they thought I would only manage 3 months but I managed another 2 years so you can see how much I tried. It takes a long time to adjust and much heartache so its a day at a time always.
I always tell my friends to enjoy themselves and not wait for the future as its a luxury you may not have.
best wishes to you both
vivian

#20
Like many other pwP, I try every day to feel positive, but reading this thread has given me my first experience - since my official diagnosis two years ago - of despair. :frowning: