My boyfriend(42)of three years was diagnosed with PD two years ago. His physical symptoms are still somewhat "mild": stiff gait, tiredness, etc.
I am feeling a lot of resentment due to the fact I have had to increase my working hours outside the home now that he is medically retired. I still have most of the burden of the household and very little freetime. We have 4 kids between us, two of which live here (10 and 17).My partner seems to sleep constantly, whereas I am physically exhausted from a long work day and dealing with the kids'busy schedules. I especially resent his naps!!I know it is only going to get worse. I think if his physical symptoms were worse, I could feel more empathy. It's so difficult to put myself into his shoes.

I try to be understanding, but feel a lot of anger. He's often moody and difficult, overreacts, and has angry outbursts: I don't know if it's the Parkinson's or his not dealing with it. He's so up and down. His personality has so changed since the diagnosis:(I love this man, but am seriously having doubts if I can cope. I am heartsick. The kids are finally old enough to where we can do more as a couple, but the future is seems so grim.It's simply not the life I envisioned for us...and not myself as a caregiver. I am also only 42.
I am also nervous about the future - selfishly, how his sickness will affect my lifestyle: I am very physically active, very social,and love to travel. Any advice on how to cope and get over my resentment. I feel so guilty !

Germany.

It’s been a long time since I have been able to write anything on this forum, due to the fact that I have felt so weary, mood swings, depression has taken hold again I have reverted to the ‘I don’t give a sh t’, ‘what’s the point’, my personality has change as many time as a chameleon changes colour… these are traits of my personal Parkinson’s.
You say your partner symptoms are “mild”: stiff gait tiredness, etc, WHAT DO YOU MEAN ETC!!!!! How do you think this as affected your partner’s outlook in life?
Have you sat down and asked him?
You’ve got kids and their busy schedules are physically draining you, then have a word with them, they might understand that your time may be needed elsewhere! (with your partner) any way at 17 surely that one can look after his or hers busy schedule!!!!!!!!!

You have, Very little free time, your future looks grim, you say the kids are old enough so you would have been able to do more as a couple! Thought their busy lifestyles would put the clappers on that!!!!
You don’t see your self as a carer, his sickness will affect your lifestyle, you’re very physically active, very social and love to travel. I know what I’d tell you to do at this point F.R.O.
You say you love him! Not enough it would seem…
Even writing this as stressed me out , it will probably be some time before I’ll be back on.
Maybe I’ve been out of order the way I have addressed this matter, and if I have I’m sure I will be told so.
Jn'r

I too, resent the fact that my OH retired, aged 48, due to PD and that now I take on the usual household tasks, as well as all the DIY and gardening.

MY OH also sleeps a lot during the day and is very restless at night, giving me little sleep.

I worked for 5 years, after OH's diagnosis, and took on board all of the above, plus maintaining a job that was 8am to 5pm and evenings and weekends. At this time our daughters were both aged just 13.

Physical symptoms are not the only visible evidence of PD, as I have found.

Yes, I feel angry, both of us are angry at the future that we envisaged that has been taken away from us. We also are moody with each other, I often overreact and have outburts that I never had before PD. His personality has changed, he is not the person I married but he is still the man I love.

It is not the life we envisaged but we are making the most of each day-doing things now that we would have done after normal retirement age.

Yes,PD will affect your future together but your lifestyle as a carer will take second place, if you can do that,and you will adjust your lifestyle to acommodate his, as I have done.

Hi

I've just read out these postings to my hubby - I'm the one with PD at the age of 44 - to help him realise that he is not the only one in this caring/working situation.

He is so angry still, after 4 years since diagnosis, about the illness. how it effects me, us, our life together now and our future. He has just said that consultants should read this forum to see the truth of how PD really hits home - to understand the unpredictability of the illness can be so destroying to "normal" life.

In a moment of anger he said to me recently "At least you know your future and will get help" "I don't know whats in store for me" meaning the caring role he might have to take on.

All I could say to that was true, he doesnt know but what I would give to be in his shoes rather than mine.

Its not just the person with PD that needs support, it is also the person nearest to them in their lives and, from experience, this support is sadly lacking.

Germany, I have no answers for you. I'm not even sure that my hubby will cope with what is to come, and if he can't then tough decisions will have to be made. All I will say is that talking does help - keep the lines of communication open.

The Breeze

Junior,

The "ETC" refers to my partner's physical symptoms: his movements are slower, some trouble with balance, he has trouble cutting his meat...so far we have coped with the "gradual" physical changes. What he experiences emotionally and mentally, we have been experiencing as a family for well over a year. It is emotionally draining for everyone.
My boyfriend and I have talked for hours, and often do - when he's not mad at the world and sulking. And his mood can change in a heartbeat. He's lonely during the day when nobody's home all day.
I know how horribly hard it has been for him and will continue to be. Your tone, which mirrors my boyfriend's,...this bitterness...is very difficult for loved ones to deal with on a daily basis. We suffer with you. I get tears in my eyes just watching him get dressed!
We live in a rural area of Germany. Kids can drive when they are 18, so although my 17 year-old can manage her schedule, she needs to be driven everywhere. And there are times that we have all 4 children here.We still manage couple time, but can no longer hike,cycle, canoe...interests that brought us together in the first place.
No,I do not see myself as a carer right now. As mentioned, my partner is doing okay PHYSICALLY for the time being. He needs to do as much for himself as possible. And I push him, because I DO LOVE him and want him to NOT give up on himself.

What are the requirements for loving a person ENOUGH anyway?

Germany
I was diagnosed with PD at the age of 47, ten years ago. I felt relief initially that at last I knew what was wrong with me - chronic tiredness, stiff and rigid muscles, pains that seemed to move from one part of my body to another for what reason I knew not, and I moved slowly, walked badly, stuttered and had a weakness on my left side. I have also always been glad that it is me who has the PD and not my husband, because I would be far more worried about him than me.
I look back and realise that I was probably rather selfish about how I spent my time, so determined to do and enjoy the things I liked. Having said that, previous to PD, everything I did was centred around my husband and children, so should I really feel bad about it?
My PD has progressed and life is much more of a struggle. Now I do enjoy my life as much as I can, and I could not cope without the love and support of my husband, who I believe finds life far more of a struggle than I do, due to the chronic depression he has suffered with for many years. From early on in our relationship I have always tried to support him, and since PD came on the scene, he helps me. The dark days are when we are both in need, can't help ourselves yet alone each other. Then we struggle.

Everyone's story is different, but all find their position difficult. I can well understand your anger and your doubts, and my advice to you and your partner is to talk to each other - lots. You both need to tell each other how you are feeling about the now and the future. They say that depression walks hand in hand with Parkinson's, and your partner may well be suffering from it, probably you too. Try to get time to yourselves - you need to get closer mentally and emotionally to battle PD. It is too easy to feel isolated because of it. The correct medication is vital and not easy to achieve.
You are probably both still coming to terms with the diagnosis, and I feel for you both. Take a good look at what information is written in this forum because there is a lot of very good advice. Good luck to you both.
SlackAlice

Just wanted to add that I believe after PD diagnosis, we go through a form of grieving - that the life we thought we would live is never going to be. It needs a positive attitude to cope with PD, and it will be harder for you, Germany, if your partner leaves all the fighting to you. You sound very loving and caring to me - don't be so hard on yourself.
SlackAlice

SlackAlice,

I thank you and everyone else for the positive encouragement. You hit the nail on the head: the worst moments are when we are both in need of comfort, but cannot handle our own feelings, much less help each other, thus isolating ourselves from each other. Then, we both feel neglected. But we have talked about these feelings, too.
I have gotten into the habit of saying: "I love you" and just leaving the room, when we are having our worst moments. It works wonders. We both calm down, and he feels more secure.Deep down, he thinks I am going to leave him. But I won't. On our good days, we're still a great couple and a good team. Yeah, I guess we are grieving.
Depression IS a problem. My partner tried 2 types of medication, which wreaked havoc on a beautiful sex life. So, now we are back to square one. We just aren't ready to give THAT up right now. Who is? But we are to the point where there is not much of a choice :(

There is a very good german website: www.parkinsonweb.de. I also believe there is good support in Germany for PD sufferers and their carers. I think you will have to give it a bit more time for both of you to come to terms with your uncertain future. There is no reason why you could not travel, just some adjustment in some areas. Try to include each other in any plans as much as you did before. Parkinson's can affect decision making ,initiative, especially if depression is present. You have your work cut out for you, but you will find that you are stronger than you might think now. You must alao make time for yourself, treat yourself and get sufficient rest. Your partner might need encouragement to do something during the day if he feels lonely. Maybe there are other sufferers in the area, maybe there are special yoga classes,or exercise classes at a local sports centre. He might dismiss these initially, push him a bit. Don't let him isolate himself and leave him all day to contemplate his lot.

Just to look at this from another angle - my consultant told me of research into PwP which has shown that those sufferers who live on their own tend to do better than those who have a full-time carer. It was quite a large sample too. I suppose there must also be such a thing as too much love?!