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By Emmi3 On 2013.10.14 17:22
Hi all,
So glad to find you and looking forward from hearing from you. My husband has had Parkinson's for 13 years. The last year has been especially difficult. Chronic back pain was very difficult for awhile and seemed to aggravate the Parkinson's symptoms. His back is doing better as long as he actively takes care of it through stretching and icing. Thank goodness because he endured 4 spinal epidurals while waiting for it to heal. We have also found out that DBS is maxed. No other changes can be made without side effects. DBS has been wonderful and bought him an extra 5 years of better quality living with less meds. Now we find out that taking more medication is also not effective, so I feel like we are just waiting for what comes next. Although he is still independent he is falling about once per day (he was hiding this from me as much as he could). He also has been diagnosed with Parkinson's dementia in the past two years. Whew! So here we are. I am finding I am having the most difficulty with the ups and downs in symptoms. Things can be going along pretty well and then his symptoms change unpredictably. I never know really how things will be which makes it harder to plan things. I feel like I am wearing down. My reserves are getting depleted and my tolerance and frustration levels are more than I would like them to be. I'm a little worried since I do have a history of anxiety difficulties. I am working madly to keep myself ok while at the same time be helpful to him. Sometimes I think I'm failing both of us. But I know that it is just hard and we are doing the best we can. It would help to know if others have also felt less resilient and more vulnerable. I am really trying to be positive, look at happy things, be mindful, meditate, smile, but sometimes it is just so hard. Thanks for sharing...

By jcoff012 On 2013.10.14 20:05
Hi, and welcome! I am always accused of being too optimistic and upbeat...but, that is how we choose to live life. It isn't because we don't accept PD and the issues...we have lived with PD and seen it over the last 22+ years through my MIL' s progression...now, four years ago, my own husband, her first born son, was dx. So, here we go again.

The one thing I "get" from your post is that you are tired and wearing down. Being around disease, even when it is well managed, is tiring both physically and mentally. Are you able to have help? Respite for you at times? Do you read or have hobbies that are yours and yours alone that you can immerse yourself in and refresh your soul?

Others will help you more than I can at this point in our journey. But, I am retired, so I am always around to lend an ear, if you need to vent. Many hugs and glad you found the forum.
Jane in Calfornia

By carman96 On 2013.10.15 00:43
Many times I have felt anxious and discouraged. It's hard not to when things are bad My husband also has dementia and has been going downhill fast
They think he has a Parkinson's plus disese. I don't like to think of stages.
It is hard to plan when you don't know how they will be feeling that day.
His doctor told me not too focus on The negative things, so I am going to try to be more positive.
Good luck

By Mary556 On 2013.10.15 08:51
Emmi, you are not failing your husband. Your loving care is a wonderful gift to him. You are doing your best. No one could ask for more.

It is very important that you take good care of yourself as well. If you are not getting enough sleep, you will have less energy to keep up with your physical tasks and it will affect your ability to cope. You sound exhausted. More outside assistance can make a big difference. Family members, friends, kind-hearted neighbors, service-oriented people from a church or youth group... there are people who want to be there for you. If someone could come and visit with your husband for an hour while you take a nap or take a shower, it might give you both a boost.

It is as if you are out on a lake treading water and other people are seeing you from a distance, thinking "Oh, look how strong Emmi is, treading water every day!" But if they could get close enough, they might see the tiredness in your eyes. If you keep treading water when you are so tired, it is not good. Your legs could eventually give out. If those same watchers could paddle their boat closer to you, they might hear you calling: "Help!! Help me!!" So you need to start using your megaphone. People around you will want to lend a hand. Ask for help soon.

Do not be afraid to confide to a trusted friend, family member or doctor that you are beginning to wear down. Someone near to you may be able to suggest the best local helpers. I believe others at this forum have recommended agencies that provide support to caregivers with issues related to patient care and aging. (I have not called yet myself.)

It is so difficult to deal with serious progressive illness, especially when you do not know what is around the next corner. Love is always stronger than every obstacle. God bless you and your husband.

By Threadhead On 2013.10.15 09:19
My husband has also reached maximum benefit with DBS after 13 years, but it still controls his tremor so well, I believe he would have died long ago without it. He is taking Sinemet every hour with few full on times. He was diagnosed 22 years ago. He has no dementia yet, but during the 10 years he took Requip he might as well have.
It sounds like you are burning out. I burned out the first time in '04. I couldn't do anything about it, so time healed. I had been a great believer in positive thinking-- oh, PD teaches you what is really important, PD is a gift, what doesn't kill you makes you stronger. But after 12 years, your mind is recognizing the dissonance between these thoughts and reality, whether you know it or not. Your life really is a relentless, ongoing, ever-increasing pile of pure crap, that no one in their right mind would wish for. (Are you crying now? That's because I hit home.) Really, when the Titanic was going down, do you think anyone tried to flip it by saying,"What a lovely night for a swim?" Our society puts high value on being tough, so we aren't allowed to have a moment's despair. PD is an interminably long, insidious ongoing disaster. That's why most or all of your friends and family are gone. It is too painful, and they have the ability to opt out. We don't.
That isn't to say that we should live in a pit of despair, but we should recognize this for what it is, and then find a bright spot and hold tight. Some days a good sunrise is all it takes.
I have found that the change from stage to stage is what unhinges me. When Requip caused him to stop driving, and I gave up my life to be his taxi, I cried every day for 6 months. Then the comfort of the routine kicked in and I was stable. Hallucinations-- I cried every day for three months. Wheelchair bound and needing me through the night--too busy and sleep-deprived to even feel anything. Each time a new routune evolves and we feel like the boat is righted. Be careful of the changes, try to not make plans. Expectations are a trap, when they are not met, we get angry, frustrated, anxious, depressed. Better to not have any to begin with.
You know what to do to help your mind. Make sure you get as much exercise as you can fit in. Never underestimate the power of the endorphin release from 20 min of enough activity to break a sweat. A really good cry will also release endorphins--I have three times in 20 years, run into the bathroom, crumpled to the floor, shoved a towel in my mouth so the neighbors wouldn't hear, and just screamed until I just got that release. Exercise is a better method.
I'm being this open so you know that what you're feeling is *normal* for what you have to deal with. Ideally you have people around, or help, but I don't, so I want you to know that it is possible to get through this on your own. And you are not failing. After thirteen years? Not even close. This is extra pressure you are putting on yourself, when you have more than enough without it. We are mere mortals muddling through. You're in my thoughts.

By Freespirit On 2013.10.15 12:07
Well said, threadhead.

Thank you.

By makrivah On 2013.10.15 16:19
Threadhead, do you live in my head? thank you for an eloquent message. Onward.

By Rempt2 On 2013.10.15 21:35
Dear Emmi3. I feel for you. My husband is further along than yours. He started falling about 1 1/2 years ago when we were on vacation. A year ago he became wheelchair bound. I try to be thankful. I am thankful for ________. You can fill in the blanks. I'm sure you can work from this. The disease is terrible but research is being done. Maybe he can benefit from it at some point. You have to hope. In the meantime, take care of yourself as others have shared. God bless you both.

By Emmi3 On 2013.10.16 03:35
I'm just getting used to how to reply on this Forum. Thank you so much for your support. This is the first time I've ever done an online support group. It's amazing to just reach out and be answered by caring people who understand.

By parkinit On 2013.10.18 17:12
Welcome, Emmi3 -

We are about in the same position as you - 13 years, DBS maxed out, no changes. We are at a point where reducing meds may be better than trying to increase them. My salvation is the fact that I have nighttime caregivers for PWP (who can't move or get himself out of bed), was told about the Alphadry product by someone on this forum (thank you!), the VA for their support (my spouse is PD presumptive due to Agent Orange exposure while in Viet Nam, 100% service-related disability), and am working on getting additional daytime help so I can get away and not have to grocery shop at 6 a.m. in the morning while nighttime caregivers are still here. Oh, and I exercise DAILY to reduce stress and uplift my spirit.

Sometimes you learn to appreciate the little things.


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