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By cmonge On 2011.09.05 12:06
Myfrustrations are starting to build into resentment and I am at a loss. My husband had DBS in April, and while it helped, he still has a lot of problems with speech (sometimes I can barely understand him). It improves after adjustment but then comes back. He is also tired all the time so we can't do much and sorry to get so personal but has been left with ED. He is so sensitive to all meds the doctors will not try anything new. Being a young couple (I'm 46 and he is 54) this is really hard on both of us but I am starting to realize just how long this could go on and eventually get worse. I see my quality of life declining as well as his. I love my husband, but I am starting to take out my resentfulness for this disease and what it's done to our lives on him. Does anyone have any suggestions?

By LOHENGR1N On 2011.09.05 16:18
cmonge, You recognize the source of your resentment and frustrations. Just Try not to take them out on Your husband, when you do or start to take it out on him stop. Reassure yourself and your husband that it is the disease that has you frustrated not the person. And be easy on yourself while learning to do this none of us are perfect, we all slip and misstep. We just have to keep trying to keep things in perspective and recognize what's going on. You sound like you've got a fair handle on this, I'd bet you're going to do fine. Keep posting. Take care, best of luck and hang in there.

By ILoveWil On 2011.09.05 16:26
I would encourage you to go to the commentary area of this Forum and read some of the helpful writings especially those of Susan Hamburger. I was getting really depressed today after a night of dreaming of my dear Wil's passing last week, just tossing and turning, remembering every last moment and the expressions he gave to me. I came on the Forum and read many of the commentaries and am feeling encouraged to pass this info.on to you. I had many days of frustration and dashed hopes for what could have been. All these wonderful caregivers have given me encouragement over and over when I desperately needed it. They are truly heroes to me. I hope you will read all the posts and learn from their many valuable experiences as I have. They also gave me many angel hugs across the wires and I send you one today too. Be encouraged...your works of love for your husband will come back to you in many ways, just when you need them. The Heavenly Father knows what you are feeling and experiencing too and He cares for you. Lean hard on Him and learn to trust Him for every difficult moment. His manna is fresh for you every morning. Much love to you.

By sannph On 2011.09.05 20:23
We were also young at diagnosis; my husband was 49 and I was 46 (2005). He is now in a wheelchair. I too am sometimes resentful of all the things we've lost. When those moments come, I usually have a good cry (privately) and then pick up and go on. It helps to look for things to be grateful for; I don't know your circumstances but we have many blessings along our journey. This forum is a huge help to me, so keep looking and posting here!

By karolinakitty On 2011.09.06 08:37
WE too were young at diagnosis, 49/51. At first I went through all the stages of grief. I was angry at my God for finally putting me with my soul mate, only to have this happen, I did get over it, mostly through my faith, but also through my guys strength and determination to keep moving despite the pain and fatigue.
I know it's hard, but one thing that has kept me moving and kept a smile on my face is humor. As much humor as we can muster with this disease.
We have, what we consider our little piece of heaven. Our acre of dirt in the country, on a lake so quiet and peaceful. There are drawbacks especially with this disease and doctors but how could we ask for more. Despite the progression of this disease, we have learned to overcome the hardships that go with it. My guy has this overpowering positive attitude that won't quit. With all the battles we have faced we have won despite the disease wanting to take him down. If you have seen my posts on dementia, we even beat that ugly monster, at least for the moment. It's a fighting battle everyday, but you can make it one that you chose to say..ok you win... or you can say...NO you can't.
My guys favorite line is "I don't have time for this"(whatever new his body is trying to do) We don't have time for I'm sorry, or sorrow, or tears....He has only so much time here on this earth and according to the docs he's 4 years into a 3- 5 year death sentence. It has happened and in our opinion it isn't up to the docs anyway... Only our God knows the true time.
You may think it odd but he looks at this disease as a blessing of sorts. It is his opportunity to have others see, he may be "at deaths door" but it sure isn't gonna show.
It takes two in this disease when you are a couple fighting it. For as strong as one is the other needs to be stronger.
I also found that getting "into" this disease, doing research and finding out alternatives to conventional attitudes and methods has been a positive uplifting thing rather than an OMG, he's dying thing.
I don't know how you prior to PD released your frustrations but one of my biggest outlets has been writing. I now have a page on facebook I try to write everyday with the help of a few friends i met along this journey. It mostly is our struggle with this disease, but also a look into new ideas and health issues.
As far as resentment...won't allow it...we have gone from being hermits, to being social butterflies....despite the PD, how it looks to others and how they react to it, we get out....if only an hour, a half hour..whatever he can handle before the spasms start, or the severe body twitching...good days .. bad days...we just do...and again it takes two. We had our dream, and it just didn't happen. Now we have an opportunity and a different dream. Teaching and spreading the word that PD is not just a shaking disease. Making the world more aware and unafraid of the Pder. Making the world aware that someone can have a deadly disease and still make you laugh, can still, if you let them, converse with aids, be a part of "life" and not death.
I will post one of those entries from my page, as I wonder after reading your posts if I am not closer to what i believe is a different type if PD, not yet discovered. Ya'll seem to have the same issues with drugs and it may be an adjustment in what our guys are receiving for meds or maybe something all together new. It may help you look at it different and want

By packerman On 2011.09.06 10:30
I am 56 and hubby is 54 (PD 18 years). he had DBS surgery in 2007.
as to the ED, we use Viagara. it is working for us (for now).
mine is also bipolar, so we have up's & down with mania and tiredness/depression.
we just take one day at a time. when he has energy, we do chores/errands. when he doesn't, we rest and/or I do what needs to be done.
hugs,
Pat

By mylove On 2011.09.06 11:26
I feel like I need to respond to the initial poster, and I don't mean to offend anyone but other than Pat, nobody's addressed the original question. There are some delicate issues in this disease. It's just part of the package. I know some spouses are grateful when sex isn't on the table anymore. But for some of us, it's a huge part of our relationship and something that is difficult to lose. I also know its an awkward conversation to have, since it seems like we have an almost Victorian attitude in this country towards admitting that we enjoy it. We are in the same age bracket as you, and I understand your concerns.

I have one thought when talking about how you're going to get through the upcoming years while struggling with this problem, especially when you say that ED drugs like Viagra or Levitra may not be an option. That thought is just to remember that there are many other ways to enjoy a sexual relationship other than the traditional. It's not necessary to have an erection to still have a fulfilling sex life. I'm thinking that perhaps searching for information or advice geared towards couples who maybe have paraplegia, etc may be useful.

It's frightening to think that such an important part of our lives as couples could go away, but I encourage you (and you to encourage HIM, who is probably as distressed by the situation as you are) to think around the corner to a solution, so to speak. It does mean a readjustment in how you define lovemaking, but it is doable. Please don't just resign yourselves to giving up such a wonderful part of being a couple.

Speaking personally, sometimes when everything else gets overwhelming, the fact that we can still connect in a physical way makes everything easier to bear. Don't underestimate the power of physical contact.

For those of you who may be offended by my frank speech, I'm sorry.

By cmonge On 2011.09.06 22:14
Thank you "mylove" for your frank speech-I need that! It's so hard to find people willing to talk about it and for so many Parkinsons couples they are quite a bit older so really, it's not an issue. Quite frankly at first I didn't think it would be an issue, but now that my husbands speech is so affected, and conversations have become frustrating as well, all intimacy seems to be missing. With him being so tired all the time, we barely get out except for dinner or a movie. Those outings are a blessing. This adjustment for me is much harder than I ever anticipated. Viagra and such is not an option, my husband has too many health issues and reacts adversly to every medication. We are trying to work through it but I know we are both feeling the loss. Thank you so much to everyone for your support.

By dear On 2011.10.13 22:12 [Edit]
My husband has the DBS and replaced his battery a year ago. He's had it for about 6 years and is 22 years into Parkinsons, diagnosed at age 46.

It takes a while to get the adjustments just right and for his body to adjust, too. Probably a couple of months for him to even out again. He also developed a urinary infection that really messed him up for a couple or three weeks. (They forgot to have him urinate before leaving the hospital and we discovered in the middle of the first night after discharge that he would need to return to the emergency room for treatment. Hence the infection next took ahold of him. Antibiotics followed.) All this took a toll. He switched neurologists and the new one uses a behviorally based methodology, testing settings according to how my husband responds. This seems a complimentary match for my husband's DBS and his needs. He saw much improvement once the settings stablized, and his speech did improve a little for a while. Right now his speech is getting harder to understand again but I don't know what specifically causes this. Gradually, I am learning how to decode his words but it helps if he will make eye contact and be within a few feet of me when speaking, though he often doesn't think ot do this, so there are a lot of "I didn't hear what you said" or "what?" Frustrating, I know, but if he's not distracted and we are in quiet surroundings, we can communicate.


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