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Topic All marriages and relationships are not the same Go to previous topic Go to next topic Go to higher level

By umajane On 2014.08.27 00:42
This is difficult to write but I will be brutally honest. My marriage may not be as loving as others. I have had my issues with my husband and although I will be his wife and caregiver to the end I feel very burdened and unhappy tonight.
I am very sad for him and do everything I can to make him comfortable, entertained etc. etc. As so many of us I do EVERYTHING but without any appreciation I am slowly dying too. He has always been selfish but now it is becoming unbearable.

By moonswife On 2014.08.27 07:18
Dear, all I can send you is a posted hug. So many of us have fleeting feelings like this. You need never feel alone. We understand.

By Freespirit On 2014.08.27 08:08
I appreciate your honesty. I'm glad you're here sharing because right now I need to be around honest people. While I have had the good fortunate of a very happy, loving marriage, I still struggle at times with being a caregiver for this man that I adore. So, I can imagine that it must be even more difficult in your situation feeling the way that you do. I just wanted to chime in here and let you know that I understand what you are expressing, and that your feelings have been heard.

By carman96 On 2014.08.27 10:10
Umajane, I understand how you feel. Although I still love my husband and we have had a good marriage of 29 years, it is still difficult. The last two years his dementia has worsened. He is like a 2 year old. Selfish, demanding, temper tantrums, you name it. So many clothes, bedding, etc to wash. Having to help him with just about everything. Sometimes I think I just can't do it anymore. You are not alone in feeling the way you do.
I have to remind myself that I love him and that I take my marriage vows seriously.
It must be much harder for you if you don't feel the love. I admire you for hanging in there. Some people don't.

By jcoff012 On 2014.08.27 11:33
Umajane, I cannot imagine how you are able to do this. To give and give and feel like it is not being returned must be so difficult. It is hard to handle the daily life of a person watching a spouse disintegrating, but to do it in such isolation must be hard. I wish some of us could hug you on a regular basis. I wish you knew you are a strong woman, probably one of the strongest on this forum. To do all of this daily takes a great deal of strength, but to do this for someone you resent is terrible.

We Janes have to stick together! Do not doubt yourself. You are doing an honorable job, and I am sure you do a great job. Please take care of yourself. Sounds like you need to find something into which you can pour your love and other talents, so that you will feel some gratitude and satisfaction. Maybe it is time for you to truly take care of YOU and YOUR needs...I am sure that you are doing all you can for him, but you need to take care of you...I wish you one better day, followed by another...and know you are loved by many...Hugs, Jane

By umajane On 2014.08.27 11:56
Thank you everyone. I need an attitude adjustment !!

By LOHENGR1N On 2014.08.27 12:03
Umajane, To deal with this disease daily grinds upon us all, patients and caregivers/partners. Do you have anyone to talk to? Depression hits us all at times and is not a weakness or lack of loving or compassion. Depression is sneaky, it creeps in and colors our world with dark colors and hopelessness, feelings of helplessness. Maybe clergy, a friend someone to lessen your burden a little? We have to be on guard for signs of depression both patients and caregivers/partners. Please keep posting we all care about you and will help anyway we can.

By Mary556 On 2014.08.27 15:30
Dear Umajane, this is a heavy load for one person to carry. to keep giving of yourself when there is no sign of gratitude must be so difficult, day after day. if your PWP has some degree of dementia, possibly he may say something hurtful and then two minutes later have no recollection of his words.
you have such a loving heart. I will remember your model of unselfish giving, not based on a mutual feeling, but true love in action.

By VioletV On 2014.08.27 18:17
Your open description of the caregiving you are doing touches me so. Each of us faces the loneliness of this process, and I have been feeling something of the same today--my PWP husband and I have only been married for about 4 years, and it was not that long into our marriage that I really had to morph into careGIVING. So, while I don't have the bleakness of a loveless marriage as the backdrop for caregiving, I do suffer from having had so little of the reciprocity and care that our marriage promised.

I have to just breathe, sometimes, when I recognize how little he has to give me. In his case not out of selfishness but out of the self-ness, self-absorption and apathy that are part of PD.

So I reach out my hand to you Umajane, knowing that you are indeed a model of giving love, not as an exchange, but as just love, as you have it to give. I wish for you the recognition of your own goodness, and that you have ways to step back, for a moment, for 15 minutes, for a day, to renew yourself and remember who ELSE you are.

We are with you!

on another non-PD forum we used to send hugs like this: {{{{{{{{ Umajane }}}}}}}


By umajane On 2014.08.27 18:34
As I read all the posts I am touched. I think that once we retired in 2007 we have grown apart. Mostly because we have achieved our goals, always worked together, the kids gone and not too much going on for my husband. His life was MOTORCYCLES, CARS and guy stuff.
I am as busy as ever but I believe in the last 7 years because of PD and not a lot of interests things have changed. Tomorrow the last of his "toys" will be sold and that will be an adjustment too.
The good new is that we bought a motor home a few weeks ago and I will be driving it. I hope this will spark him a bit.
Today is a much better day and I believe I was in a bit of a self pity mood last evening when I posted.

By olpilot On 2014.08.29 01:48
Good luck with the motor home, my wife and I the parkie started that this summer. Even did camp hosting in the upper peninsula of Michigan. Parkinson' s was not on the future we picked either. When we decided to get married it was after spending 30 days on a sailboat we got along so well we thought we could handle anything. Parkinson's changes everything and none for the better. I hope it works well for you, but even after that wonderful time on the boat in smaller quaters it was at times tough in the motor home. My moods , my need for meds, all those things that make living with pd can make it hard. My suggestion is that you find places where you can get your own space. Travel was very hard on me an I needed to sleep more than most people can imagine. But we worked at it and made it work. The anger and fears can be condensed in a small space. You both need to take care of your selves as well.

Our times were somewhat made harder by my wife getting the news her hands and wrists would most likely not improve so we were both fighting disabling conditions. The good news is we made it and will continue with our traveling life as long as we can. I wish you well but be sure to take care of yourself. If Parkinson's grows into resentment and anger it can take a terrible toll on you both.

By mylove On 2014.08.29 09:44
"If Parkinson's grows into resentment and anger it can take a terrible toll on you both."

Yes. We are there. Despite our deep and abiding love, despite the fact that I spend 110% of my time trying to see every situation from his point of view, despite killing myself attempting to engineer the entire world so that his world is as peaceful and stress free as possible, the anger is still hardest to bear. I understand it, I absolutely do, but it's so lonely when the person you love spends their time cloistered away, seething at every interaction. So far, I'm the only thing that (he says) doesn't make him angry. The spouse can only engineer the world to a certain degree...I can't stop the dogs from barking or the bills from coming or an appliance from breaking (though God knows I try). The eggshells I'm walking are a foot deep.

And I know he loves me. I think he still loves the kids, though he's not able to speak to them civilly anymore. We have a good life. He's not unable to do everything yet....he's still upright and mobile...he still has all of his faculties and still drives. We could be making the most of this time but somehow have become trapped in this cycle of unrelenting anger and isolation.

Today I'm calling the neuro to set up another consult. Last night at dinner he exploded and did something shocking and very out of character. This can't go on. I think it's time to try another antidepressant.

And to ANYONE who might suggest that I just am not trying hard enough to love him, to understand what HE is going through, or that I should sit back and enjoy this part...if you suggest that I will warn you that I might bite back. He is my life, my love, my everything... I understand the underlying feelings and changes that are making him this way, I just refuse to accept that this is the way we have to handle those emotions. There are better ways.

Somehow I think we tiptoe around the fact that depression and anger are intrinsic to this disease. We've been addressing the depression (and thank RW for that, bless him) but the anger is a huge factor too. If your spouse doesn't have that part, you are blessed, or they hide it very well. I believe Ben was hiding it well for a long time, and it's just finally erupted.

By jcoff012 On 2014.08.29 11:25
Michelle, no one on this board would EVER say you aren't trying hard...they had BETTER NOT...Your love for Ben shines through your posts.

I, not unlike you, am beginning to think that the meds are the easiest way for doctors, even excellent neurologists, to treat PD...Having bad times? Let's medicate. Anger issues? Let's medicate...and medicate...

What ALL of us need is a cure...even more, to learn the cause of PD...Just medicating the symptoms only seems to placate, not help anyone...PWP or caregiver. Once the meds no longer work, they switch to something else.

Now, should PWP go through this journey without meds? Of course not, that is all any of us have. I just hope and pray some good news about cause and effect is in our near future. Heavens, we all deserve a break from this stupid disease.

I agree with you about Ben (and Carl) hiding the anger...I see Carl doing the same...he lashes out...So far, I have managed to ignore or accept that it is largely frustration on his part, but just the other day, he told me to "shut up" in a store--and, before I could walk away, he literally leaped forward and said, "I am SORRY, Jane...I AM SORRY. I didn't mean that, I meant, be quiet...WHY did I say shut up?" For him, that was a HUGE revelation--in almost fifty years, he has never said that to me; in fact, it was a "NO NO" situation with our kids...NEVER tell anyone, I have to admit I was stunned...

Like you said, maybe we have been very lucky so far...I choose to remember how gentle and kind his Mom was for the 22 years she struggled...and I hope for my gentle husband, that he can be so, too...

Know you are doing your best...I know you are, Michelle...and, deep down, YOU know you are. No one can, or should, expect more from you. One step at a time, remember?

Love to you both. I do hope someone can step in to help you right now...a friend, a doctor...just don't let it bottle up are worth more than that...Hugs and take care of yourself, Jane

By LOHENGR1N On 2014.08.29 13:07
Okay, you have me thinking. Over the years the pharmaceutical companies have denied and down played the connection that is plain to us in the trenches. Compulsive gambling, hyper sexuality, porno addiction etc. However I have had friends on meripex and requip class of medication who became combative, abusive verbally and psychically with spouses and partners. I believe that this is also a sign one should keep an eye out for as a side effect of this medicine. Does this excuse any behaviour? No but it does point to hope for improvement if it is medication. If I remember correctly Jane didn't Carl start on one of these a couple months ago.

By jcoff012 On 2014.08.29 13:25
Al, Carl has been on Requip since we moved here five years ago...he hasn't had any least no outward ones...He seems to have more trouble with the Sinemet giving him nausea than any reaction to the Requip...

I will be certain we discuss this at the meeting with the neurologist at the end of September.

It was such a shock to have him lash out at me, but it was even more that he INSTANTLY realized he was wrong and profusely apologized...It was really odd....really.

By mylove On 2014.08.29 22:39
Thank you guys so much. It's so hard when there's no one to talk to and the counselors appointment is two weeks away... Doesn't much help when you're sitting there trying not to cry.

I'm not sure either. The Requip is one of Ben's primary meds, but he's been on it a long time and we have never had issues before. The only thing I seem to be able to correlate it to is the progression, and his frustration and anxiety about that. Which I totally understand.

I also didn't have to google too hard to find numerous sites talking about Parkinsons and anger. I guess that's really not too surprising...anger can be just another face of anxiety and depression. So maybe the right SSRI would help.

This will be our primary topic at the neuro's, so I'll let you know what her thoughts are. I sure wish he would have tolerated the Azilect better. It really made life better for him in a lot of ways - movement, mood, energy. But he didn't feel he could deal with the dietary restrictions, especially after he had the scare of the med reaction that sent him to the hospital. *sigh*. Such a delicate balance....

By the way, just an aside - anyone else deal with issues of tachycardia on just a random basis?

By umajane On 2014.08.30 15:24
Olpilot It was interesting to hear about your camping experiences this summer.
We all have to keep trying to do what we can...

By carman96 On 2014.08.30 17:29
Michelle, my husband also gets very angry at times. It is usually because he is so frustrated that he can't drive, etc. I am the bad guy because I hide the keys to all the vehicles. When he gets like that it's scary because he's so out of control I'm afraid he's going to hurt himself. It's part of the dementia for him also because he gets confused and doesn't understand.
It's not easy that's for sure.
The neurologist is convinced that even if she took away all his medications he would still have the same level of dementia.

By carman96 On 2014.08.30 17:35
Umajane, we bought a used rv a couple years ago (we've always had rvs, trailers, etc.) It is pretty small so I can drive it. I don't want to take it very far though. We've used it about 5 times is all.
Unfortunately I decided this year it would be too hard for my husband to climb the stairs, sleep comfortably or use the restroom easily. He still thinks we will use it though.
Enjoy it. It can be lots of fun!

By umajane On 2014.08.30 20:36
Thank you Carman..We will try it even though it is difficult. We tried it last week and it worked quite well. It would be fun to camp together......

By olpilot On 2014.08.30 22:54
I was on Requip for a couple of years and the side effects we sudden sleep attacks and out bursts of anger. My Dr didn't want me on sinemet yet because of my age 62 now and the fact that it wears of eventually. I took my self of the Requip and it is the best thing I have ever done for my self. The body needs dopamine not something to trick it into thinking it has it or what ever it does. I don't know as much as Al on all this but for now the sinemet is the best for ME. My prayers are wiyh you all. This is a fight with no winners.

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