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By karolinakitty On 2010.12.10 14:31
By flagk On 2010.12.09 22:05
Amen to all
I have been on emotional rollarcoster since we wer "officially told it was Parkinsons that my hubby had. I have read and researched and read some more. I have tried to be patient and kind -- the kids say poor dad your being too tough on him -- He says he doesn't see any good from the exercises -- doesn't want the meds and I just wonder how bad it will get how fast and what other joys are in store. A good cry would really help But I just can't seem to let it out -- When the dam bursts it should be a dozy.
We are just in the begining and allready I wonder about how much I can do and stand -- Only God knows what is in store for us.
Do you discuss with the PDer at what point you will no longer be able to cope and care form them now or later. how do you find a decent neuro and PT person? Who holds me when I'm tired and frustrated?
The blessing of this site is that it so helps to know that others have been down this road and so many of you are so brave and loving -- You are amazing even when you are complaining!

I reposted this so you maybe could get some new answers.. as Pearly said some just might skip over that post....

By karolinakitty On 2010.12.10 14:48
In answer to your questions:
My guy is only 54 now and we have discussed everything up to his dying day. We are open about everything but at the same time respect each others emotions if we have issues.
A good cry can be helpful. When we first got diagnosed i went through all the stages but depression, i won't allow it. Anger and grief were my two biggies and i did have a big cry. Once i got that out, i have a more positive attitude toward all that is to come our way. I've researched and still do,to find everything i can get my hands on. There are so many views from so many people you just have to read and choose the way you look at things.

I highly recommend looking into a Movement Specialist. Check your nearest teaching hospital or Google one for your area. They deal with PD all the time unlike your everyday neuro who only sees a few a month or year..... It is so hard to find a good doc who will listen these days.....

As far as your children ..... i say tough love .... If they aren't there 24/7 they have no idea what he does or how he acts on a daily basis. He is under your roof and if they have issues they can come and spend some quality time with dad to see how things work.... i don't mean to be a smarty pants, but if your children are so concerned then maybe they are the ones who should be holding you when you are tired and frustrated... My kids live far away.. i have no one around to share my moments with...

From your post i will be bold and say this:
My strength and my spirit are strong because of the God i believe in. My faith in Him, gives me the strength to know that no matter what he gives me/us ..i/we can handle it... My guy looks at this disease as a blessing, a blessing to others, to see that a walk in faith can give you so much more if you are willing to hear what He has for you. Being in so much pain and having so many cognitive issues that my man has, to be so young and not have the possibility of reaching "old age", yet living everyday to it's fullest, showing a joy that folks just don't understand.... that is his blessing....

By Pearly4 On 2010.12.10 15:44
Moved from the previous post:

Flagk -- we found our neuro through a Parkinson's support group -- I can't speak for others. You might find some a little slow to answer giving the location of your post - this one brought up so many issues for so many people, they might be reluctant to read it again! If you don't get much response, please feel free to start your own post with the same questions.

Some people recommend taking things slowly at first -- the information you get about the disease and its course can be a little overwhelming if you read too much too soon. You need to remember (as does your husband) that everyone progresses at their own speed. My mother had a diagnosis for 8+ years, but had it for a few years before that. She died in her sleep, but even at the end was fairly mobile and independent physically -- I think it was a blessing that she died before things got really bad.

We told her from the beginning that she was welcome in our home and we would care for her until either she or were being harmed by being in the home, either physically or mentally. I was straightforward with her and didn't/wouldn't promise she would never be in a nursing home - I couldn't do that. I think even with my husband I would tell him the same thing -- "I'll take care of you as long as I can, but I may not be able to do it all for the length of your illness." I would expect the same of him. As you say, only God knows, and you may find you have more strength and are able to do more than you think and that he may not be as bad or suffer as much as you (and he) are afraid he will. This disease always wins - all you can do is play the best game you're able to.

By Lacy On 2010.12.10 18:29
I am fairly new at dealing with the effects PD has had on my husband. We got the diagnosis 2 years ago but I did nothing to research or learn about it. I guess I was in a state of denial. I was convinced his shaking hands was only familial tremors because he'd had them for years, since his late 30's. His dad had them too and was never diagnosed with PD so I just figured my guy didn't have it at the time he was diagnosed.

Anyway....so who holds me when it gets to be a bit much? HE does. I go to him while he's lying down and pull his arms up around my neck, put my head down on his chest, and let it all go". His touch is the same, his warmth nurtures my need for physical affection, and the sound of his loving heart beating in his chest strengthens me to continue caring for him to the best of my ability. I might add that I do the same when he's in his recliner....I kneel down, get up real close to him, put my head on his warm chest and just let all my emotions go where ever they might land! His hand on my hair or his arm around my shoulders sends so much positive energy through my body that I just feel re-energized and able to continue with what I need to do to make his (and my own) life better and more comfortable.

You're right, we didn't ask for this to happen in our lives but we also didn't ask for the other hard times we've endured and we'll endure this one too! God has a plan for us....who are we to question it? We put our trust in Him. It might not be the plan we'd lay out for ourselves, but He knows what's best for us! I just don't know what I'd do at times if it wasn't for my faith!!!

When the going gets tough, we all just get tougher!!

By mylove On 2010.12.10 19:10
At the risk of being stung for not speaking for everyone (because I can only speak for myself), I am so glad Lacy posted the second paragraph.

My husband is over a decade into his diagnosis, but is still doing well. I do believe this: we are always in this together. I think it will be a long time before he is incapable of giving back. The hardest part is how to share when you're down without feeling like you're burdening your partner. The last thing I want him to feel is that he is part of my challenges (even when in reality, some of the issues we face, particularly the latest few rounds of medical challenges, ARE a large part of my stress). But truly, he is still my partner. My husband. The other half of my team. If he can't pull so hard on his half of the traces in some areas, there are others that he more than makes up for. And emotional support, nurturing, and understanding are things that he can do.

I know there may come a time when that may not be possible. But like Lacy said, the fact that we are still facing things as a couple keeps me going and gives me hope to carry on. I do believe God has a plan, and I believe that we are given challenges in order that we are to learn something about life and ourselves. Sometimes that's been terribly hard to conceive, but I've seen it happen too many times to question. I guess that's faith in a nutshell. I'm sure it was incredibly hard to see the long term value when one was facing their persecutors holding hammers and nails too, so who am I to complain?

I see a counselor, because I don't want to feel like I'm adding to my husband's load by asking him to help me hash out all my problems. I told the counselor that, and he had a surprising answer. He said that so long as your partner is capable, that it's really cheating them out of their role as your confidant and your comforter to keep your heart's challenges from them. Maybe they can't crawl up on the roof and clean out the gutters anymore, but it takes little effort to hold someone and say "I understand". I thought about it, took it home, discussed it with my guy, and he agreed.

That said, I understand that sometimes that's not possible. For that, we are here. It's a good place. We have friends. If we all lived closer we could have a beverage and a long chat, but that's the blessing of the internet. Friends, and understanding, are only a mouse click away.

By Hattie On 2010.12.10 20:48
I also say AMEN to Lacy's second paragraph. I needed to hear those words. Sometimes we have to take the initiative in getting the affection and support that we need and find new ways to express it. For my husband and I it is walking a half block to the mailbox every day holding hands. I know I have his attention and can bare my soul in those few minutes. Usually by the time the walk is over we've reaffirmed our love and appreciation for each other. Who knew that walking to the mailbox would be the best part of my day. Little things can mean alot!

By karolinakitty On 2010.12.10 21:12
As Lacy and mylove stated... my guy and I share our moments....
This is a little off the subject but at the same time there..

Living in rural SC, we have our dogs, who we have a large 20x20 kennel for their outside time. Just a few weeks ago, our lab escaped on me...she was always trying and finally succeeded. She has not been back. With gators close by in the swamp, we have our suspicions... A friend found a beagle, without a home so we took her in, ran her to the vets..etc etc
While we were leaving a lady was also leaving with her lab, looked just like our Marion... i lost it right there in the vets... My guy hugged me as hard as he could and got me to settle down..... he knows all the things I/we do as caregivers and knowing he can still be my strength in times like that, just shows what he always says.... i may be different, but i'm still me......

By Emma On 2010.12.11 04:39
I think we all understand the emotional roller coaster that you're on, we've all been there and still are from time to time. When you finally allow yourself that cry, and you will, it's OK to just open up the flood gates. We all need to do that sometimes. When my husband was first diagnosed I didn't cry for a long time, then one day I was driving to the store and it just burst forth. I had to pull over and sit by the side of the road because I couldn't see where I was going. To this day I have trouble crying at home but sometimes I drive down to the lake and sit in my car and let it out. I think that crying can be a cleansing, relieving kind of thing so don't feel that you have to hold it in.

No one else, including your kids, knows what this is like. Don't let them upset or confuse you.

Like Karolinakitty, my husband and I have talked about everything right from the beginning. I made the mistake initially of promising him that he would never have to go to a nursing home. I realize now that that is a promise I may not be able to keep, and I've told him that. I have explained to him that I want us to be home together as long as possible, hopefully to the end, but that there may come a time when I cannot care for him at home. I have always tried not to hit him over the head with the things I want to talk about so I would often bring them in through the back door so to speak. For example, I would tell him that I had been reading something about feeding tubes (or whatever) and that it made me think about what I would want. That would lead to a conversation about future decisions and end of life care. It's always been kind of baby steps for us, but we have managed over time to discuss everything that is important, for now and the future. I think it's important to do that.

A year or so ago I bought my husband a "Life Story" book. It's a sort of do it yourself biography where the book poses questions about your life starting in childhood and you answer them. We are still working our way through it. I read the questions, my husband answers and I write it down. I mention this because it is not only something that he enjoys doing but it helps to keep me focused on and mindful of him as a person, not a patient.

I understand what you're saying when you ask who will hold you. And yes, your husband can, but I understand that there are times when you need to "crumble" and not put that burden on him. I am fortunate to have a good friend, who happens to be a retired geriatric nurse, so she understands as much as anyone can what I'm going through as a caregiver. She is nonjudgemental and has become a human sanctuary for me, providing comfort, support and hugs when I need it. If you have someone in your life who is willing to do that for you don't hesitate. We all need a safe haven sometimes. And there is always this board. We can't physically hold or hug you, but we can reach out to you in spirit and hold you in our hearts.

By lvmymom On 2010.12.15 19:10
I'm so sorry you and your family are facing the worry of Parkinsons and how it will effect all of you in the future. It is a wait and see disease. Good luck.

I think we all have to respect the fact that each of our loved ones have fought off facing the disease from the moment they heard "parkinsons". It is human nature. Be on his side while he fights against 'accepting the disease'. When he is ready he will face it with you ... but in the meantime why use up your energy? You are already wondering how much more you can take and it has only just begun. Listen to your kids. Listen to your husband. Calm down. It doesn't get easier.

Your husband is acting normal over this news and so are you. But what do you do with your nerves and anxiety? Well, stop trying to be your husband "trainer" ... instead allow him to come to terms with his situation; then educate yourself, do your part and be the best you can be. Go to classes, join the local Parkinson's Society and meet with other caregivers. This will give you something to do with your energy. (I sympathize because I had to learn it the hard way as well.)

When he is ready you will be so prepared, calm and wise that you will actually be of some help and will know where to turn for help. He needs a rock of gibraltar not a rock that crumbles.

His unwillingness to participate right now may be a gift to you. Use the time to be the best, strongest and most understanding PD wife in the world.

Good luck ... I send you my very best. I loved it when someone wrote that your husband would be the person ready to hug you when you needed a sholder to cry on. She was correct. This takes team work.... it will happen. Allow time to be on your side. You'll both be helping each other eventually.

I think ... I hope.

By flagk On 2010.12.28 21:02
Wow -- Thank you all for your knowledge and support. I haven't logged in for a while busy with the Christmas stuff. We are working on it-- In a way we are closer today than 6 month ago and we are both learning as we go. My husband has started simenet and does not see it improving him -- I can see improvement in his ability to use his hands. but he has only been on full dose for a week and 1/2 -- We will see how much it helps -- The neoro assured us it will.
When he is ready I will look into moving from a regular neauraoligist to a movement specialist -- We are in a major Medical center area & I know there are some in the area but i am also waiting for better weather to schedule. I also want to contact a support group -- What I want most is a decent PT and OT person that is familiar with PD -- Our chropractor is great and has helped a lot but is not cover very well by insurance. While PT and OT would be better covered after our 1450 deductable is paid.

By care4loved1 On 2010.12.28 21:44
Karolinakitty
we are both in the same spot. My hubby was diagnosed just over 3yrs ago. it has been an emotional roller coaster. He has been on and off drugs, been on and off work. I read so much about the disease because i am the type of person that wants to be the best I can to take care of my husband. The more I know the better I feel I will be. I did not cry for a very long time, because we have teenage girls and I feel I need to be strong for them and for my husband. But sometimes the stress just gets to me. As of late it has gotten worse. I think becasue he is getting worse and it is very noticable. He no longer thinks the way he used to. His memory is very bad. I no longer feel like I know who he is anymore. He deffinately is not the man I married. He will not talk about what he wants for the future. His response to anything is there will be a cure and that is all there is too it. I know that a person has to be very positive as I am too, wishing and hoping for something to happen to find a cure. But at the same time i have to be realistic and know what he wants if there is no cure. I try and go to support group mtgs but they are just too painful for me to go to. The only ones that are available are for older people that have had PD for a very long time. It is just way to hard for me to listen to what my future holds. I am not trying to run from it but it is just to hard for me to cope with right now. One day I will beable to but I am not ready yet. I know that I am grieving my husband right now as I am very depressed and dont even want to leave the house. I just can not win with him in anything we do. He says one thing and does another. And gets very angry with me. I know most of this is due to him dealing with the PD and some is I am sure from the meds. I can not say I wouldn't be any different. You need to be strong for him and support him and go through the journey together. I know a huge part of my loss was all the dreams and all the things we were going to do when our kids left home, etc. Those things may or may not happen but it is all part of the grieving process. WHICH TAKES A VERY LONG TIME. All I can say is somehow find support to help you through each step of the way. That is why I am on here, even if it is just to read the posts and learn all I can. Also to see that I am not the only one going through this, because at times I do feel alone and this helps me.

you can also email me if you want to talk anytime. I have talked to a few others via email and it has helped me immensely.

By parkinit On 2010.12.29 11:13
This board, this place, this "circle of friends" keeps me going. Thank you all. I don't have support outside of this board. You are my support - those who bolster and strengthen me in my lowest hours in dealing with this horrible disease.

My own father is terminally ill with cancer and my mom called today, frustrated because dad got water on his bandages. In a frustrated tone, she said, "I guess I'll have to bathe him now myself to make sure he doesn't get his bandages wet." I bit my tongue as I thought of all you here, doing so much more, day after day. Working through depression, working through the person you love changing and living with that "new" person for years to come, and yes, working at times, through the tears.

She mentioned that "You ought to go visit **** with your friend, ***. They have an outdoor skating rink." I thought, "You are so much in denial about my own situation and then dealing with your own." She thinks I actually have time to go to a nearby city with a dear friend to go ice skating. The luxury in that. The impossibility of that. The denial my own mom deals with in understanding what I'm dealing with is enormous. Do have I have family support? No. They like to think they are, but everyone is in denial about the level of care you give and that is needed. If you try to share it with them, you can see them shrink away. Thanks to one of my spouse's dear friends, I get away once a week while he is here with my spouse working on his "projects."

Thank you for opening your hearts and sharing your joys, your anguishes, your disappointments and your delights. It helps me make it through the day.

By lurkingforacure On 2010.12.29 11:38
parkinit,

I am sorry your family is clueless but can totally relate. My husband's mom cannot, willnot, refusese to, acknowledge , whatever you want to call it, that her son is ill. She sat by him Christmas Eve dinner AND Christmas Day dinner and said nothing, nothing at all, acting like everything is as it was years ago. It is beyond incredible to me.

I've told my husband that it pains me to no end to think that one of our kids could one day be ill as he is, so obviously not well, and I would act like that. To say nothing, and act like everything is perfect, in the face of such an obvious illness is truly spectacular. I know it really hurts my husband to know his own mother is either so entirely clueless that he is ill (and NO ONE is that dense, even he realizes that) or, tragically, she knows but is too self-centered/selfish to say anything, for fear of having to actually deal with something unpleasant. I think of Scarlet O'Hara when I think of her, denying anything unpleasant even when the soldiers are at the front door, refusing to grow up. I really don't care about her personal growth or lack thereof, except for the effect her behaviour has on my husband. It sucks and I've gotten to the point where I can barely speak to her, it is hard to be in the same room with her.

If it were only my husband, that would be hard enough. But her own husband last year had life-threatening heart surgery (experimental, no less) several hours away and she did not go to the hospital once. My FIL had to stay out of town at the facility where they operated for over a month for follow up and not once did she go visit him, instead, making her kids take turns to go up there to ensure things were going well. Imagine making my PD husband drive half a day one way and spend a couple nights at the hospital hotel to check on HER husband, when she has no health issues and could easily have spent the entire time up there at his side. She also did not go to help her own daughter after cancer surgery, even when the daughter bit the bullet and ASKED her to come. The mother's response? "I don't know what I could do to help". This is my MIL, and it is so sad. I feel bad that I feel the way I do, but now that I am a mom myself, I just cannot imagine treating your kids as I've seen her treat hers. I often wonder if my husband has PD because of the family dynamics, and of course, my husband was not nursed as a baby, something I firmly believe has significant effect on emotional physical health later on. We'll probably never know, but I do know that if my husband or child was having surgery out of town, anywhere, I would crawl on bloody knees to be there.

By rmshea On 2010.12.29 19:53
It truly is amazing that family members see it right under their noses and will not acknowledge it because they simply cannot deal with it. My MIL is in denial about how bad she is and so is the family. She is dehydrated again, the docs were all called and they say there is nothing they can do. Her primary asked me why she was still living alone and i said it's because I have no support of the family. Yet none of them are volunteering to go over 24/7. I went over tonight, she hadn't taken her suppertime meds, I stayed until she drank the last of the glasses of water. I guess I leave it all in God's hands and they all will have to deal with the consequences of this lack of prompt decision making.

By lurkingforacure On 2010.12.29 21:24
I'm not yet in many of your shoes here but I think what I am learning from you all is that we do the best we can with what we have at the time, so we have no regrets later. Family members who can't/won't help will have to deal with their guilt later, or even, ironically, if they themselves get sick and need help temselves. I learn so much from all of you here, it is so helpful that you share what you are going through with this awful disease.


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