For those who care for someone with Parkinson's disease
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I've been thinking for a long time about finding a group such as this. Sometimes I think I just need to vent. My husband has PD for about 15 years. At first we thought, ok not anything we can't handle. Meds took care of the tremors. But yes, it has progressed to the point that he needs someone with him all the time. I'm stressed and overwhelmed. He is not the same man - mentally or in personality - that I married 30 years ago. I am not the same woman he married. I'm upset and angry and depressed and generally sad all the time. My mother passed away in January and that has contributed to my depression (father passed in 2008). I just want to say I'm glad I finally looked for and found all of you. I've read some of the threads and I think it helps just to see that others know what I'm dealing with. Thanks for listening... BTW, my husband is 75. I am 63. I guess it's a good thing that I'm a bit younger and can take care of I'm. |
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Yes, it does help to be able to come here and vent and discuss and know that we are going through the same. I'm beginning to hate myself for being so aggravated, angry, depressed and just plain bitchy to my honey. Every morning I wake up to aggravation. I just wish I could get one good nights sleep and get up out of bed when I felt like it, not have to pull him up out of bed with my aching body. Jane stated the other day that it's the PD we hate not our hubby. It's so true and I try to look at him and see how he's feeling not able to care for himself anymore. It's so sad that I find myself in tears almost every day. We all seem to have so much of the same but some have worse and it makes me thankful that my honey isn't worse. I try to count my blessings and be thankful for all we have. Big HUGS to you |
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Thank you flowers12. I know exactly how you feel about wanting just ONE full night of uninterrupted sleep. |
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Welcome Pinki, I think most of us are tired, aggravated, grumpy, and the list goes on. I didn't even like myself on some days b/c that isn't my true nature. My husband is a Veteran and about 3 weeks ago they approved me for 7 hours a week for a caregiver to come in to help. I knew I had been stressing out but didn't know how much until I have been able to leave the house with no worries about my husband. She has been finishing my wash, running the dustmop, has cleaned the bathrooms and more. This program linked me to another organization that will also help called the Midwest Agency on Aging. I had never heard of them. I would check your area for a similar program b/c they will be giving me a caregiver for even more hours if I need it. So far this has been a God send. Check with your state and county to see what might be provided free of charge for you and your husband. In the meantime, you have found your safe place to scream and vent. You will find that I have done it plenty of times. Blessing to you. |
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Thanks Trusting. I too really dislike myself at times. Especially at 4 am when he needs me to get up and I am not a morning person. I see such a difference in myself if I can sleep till 6 or 7.  DH is also a veteran. I saw something about a group that helps with in-home assistance. But I'm afraid he won't qualify. We applied for veterans benefits once before and were told our assets are too high. That's what we get for saving our pennies. So eventually I'll look into some help and pay out of pocket. We're not rich. It's won't last long. Then there will be nothing left to take care of me. |
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Pinkie, I have been a reader here for over a year as my dear hubby is in the early stages of Parkinson's and I learn a lot by reading this wonderful forum. But I registered to let you know that if your husband is Vietnam Veteran he IS eligible for a minimum 70% disability if he has an established Parkinson's diagnosis. There is a form called DBQ that your private doctor can fill out that establishes he has Parkinson's diagnosis and the degree he is affected- loss of smell, gait issues, dominant hand tremor, etc. If your husband stepped foot in Vietnam and can prove it with military orders or buddy letters, he is eligible with no income limits. I don't know when your husband applied, but get a service officer from the VFW or DAV or as in Texas, they have state service officers, to assist in reapplying for diability. The long term benefits to him and yourself, as spouse, are worth the efforts. As my husband had war injuries, and other agent orange medical manifestations, he is now a 100% disabled veteran. He is a retired executive and reserve officer, so income had no bearing on receipt of benefits. All Vietnam vets deserve to be supported by the VA when the terrible diseases associated with exposure to agent orange rear their savage heads. I wish you the best of luck in getting any benefits that your husband qualifies for. If you have any questions please just post them, and I will try to answer as best I can. |
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| Hi, I am new to this group and have never used a site like this before. My husband was diagnosed 1 year ago and the neurologist said probably has had it for at least ten years. I am 58 and he is 64. He is also so very different from the man I married over 20 years ago, life is very different. He is still able to work and does participate in family and friends when we get together which helps me to be able to get out. I am also fortunate that I am able to travel with my oldest daughter for a few weekends a year. The hardest part for me is the lack of expression and affection that he was always so open with. There is never any joy in his expressions and always flat with his responses. I am sad for him as well as our marriage wondering what the next 10 years will bring. |
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Hi everyone! Been a very hectic life here... not PD related, remodeling! After a six year drought, it rained here almost daily for months, so our outdoor room/pool/fireplace was delayed. Work is moving along now! So, I can get some of our life back to normal! To those of you new to this forum, welcome. I am Jane, be 69 in July and married to my PWP, Carl, for 50 years on June 10. He was diagnosed nine years ago, but is still very high functioning. He drives, walks daily, does Tai Chi, Rock Steady boxing, and is working with a contractor on the remodel. He is slower, has tremors on the left often and sometimes has them on his right. The main problem we face is he is quick to anger and loses patience. BUT, we handle it...and that is why I logged on tonight. While I agree there is sadness and loneliness with PD, you will never find me attacking my husband for actions or inactions because of PD. I get mad at the disease, but not him. Any more than he blamed me for my cancer or my stroke. I just want you to read a viewpoint from someone who is sad at times, but never angry with her husband. Sadly, we know what is coming, for his Mom had PD for over 22 years. We have been saving money and traveling while can, and preparing our home as an oasis for the time when he cannot travel. I wish I could drive PD from all our lives, but I can't. So, we do what we can and have learned to take life one day at a time. The caregivers here are often overburdened and rant. No one judges them. We all handle PD as best we can. Carl and I choose life and being as positive as we can for as long as possible. Good luck! |
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Thank you for the information. He did serve a short time in Vietnam. But he was not "in country". That's the distinction I understand they use for service related Parkinson's diagnosis. But we do have a local VA assistance center that I need to go check out. Thanks for reminding me. |
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They now have what are called blue water vets that were on ships at the bays, also if he even just landed in country for a few hours and can prove it with orders or an account of a fellow service man to vouch for him he can claim exposure. Good luck. |
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Jane, your comment reminds us that many of us have had loving, positive and well-engaged partners who treated us well over many years. That kind of history gives us a baseline of memories of love and support to draw on. But that's not everyone's story. Imagine that over the years your marriage was just marginally tolerable, but that you stayed together for any number of reasons (love, loyalty, kids, finances, religion, family, insurance, shared businesses etc etc etc). Then, after many years of it being barely ok (or even, just-not-bad-enough) he gets PD, and becomes hostile, indifferent, stubborn, demanding, unfaithful etc. etc. It would be hard, I think, under those circumstances, to sustain the kind of stable and loving relationship that you describe. Just suggesting that everyone's path is different. |
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Violet, While you are correct that everyone's journey is different, and I have always enjoyed your posts, I just wanted to let some of the new people know that there are many sides to PD. I cannot blame my husband, or anyone, for contracting and suffering through a disease over which they have no control. I prefer to give him/her dignity as long as possible. You are correct. We have an unusual relationship, especially since we were married so young (I was 18, he barely 19). We know it is unusual to remain together this long, heck two of our kids are divorced! But, perhaps a lot of this harkens back to our basic belief in "till death do us part". It also is a relationship built on respect and trust. This is not to say we have never had rough patches. We have. Again, I realize that many here have a different path and history, but I would rather that in that case the people involved would go their separate ways, rather than dwell on an increasingly horrific hatred. What I *am* suggesting is that any chronic, longterm disease requires a huge commitment that unless it is taken willingly will only degrade, humiliate, or worsen the quality of life for everyone involved. It is not noble to remain out of duty when the love is gone nor is it all right to constantly be negative about a situation over which no one has control. I said a long time ago, that I cannot blame my husband for PD, I can only be angry WITH PD. I just want others to know that not all caregivers are constantly distraught and angry. Many of us are overwhelming sad, want our lover and friend back, and are happy for every moment we have because we know this life can, and will, change at any moment. I wish no one had to face this beast, this PD, but I wish it more for the PWP...we caregivers have our own trials and face our own sorrows, but no one deserves to have PD... |
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| Violet, you are very insightful. Thank you for your perspective. |
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Jane, of course. There can be loving relationships despite the crazy and exhausting hardships of PD. I'm lucky enough to be in one. I married my husband when he'd had PD for 15 years. He is a lovely man, and when we married I told him that it was clear to me that we should have met years before -- and if that had been so and he developed PD, I'd still be with him, so, marriage it was. (Funny that the other guy I was dating at the time ended up having a minor stroke and losing his speech the next year, so...). And my husband and I manage really well, tho he is father along than Carl, doesn't drive, can't remember who the daughter is who is getting married next winter (does not remember her adoption with his ex wife AT ALL--doesn't really know who she is despite frequent calls and visits several times a year). We still have good times, and it's manageable at worst, and loving and sweet at best. But, I just know I'm lucky. Still think I made the right decision to marry him. Just wish his PD hadn't gotten to be so tough for him or me. And, as a former clinician, I frankly have skills at dealing with difficult behavior and not taking it personally. I know I call on them at times when he is not himself, and they help me stay balanced when things are just going to hell in a hand basket. Not everyone has as many material advantages as I have had, nor as happy a family. PD is just a rotten rotten disease in its own way for everyone. |
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| Jane, you are extremely fortunate that your hubby is still able to function at such a normal level. Even though my hubby and I have been together for 41 years and we have had a loving marriage for the duration this disease has stretched my patience and capabilities to limits at times. I have to do everything for him now and I still love him as always but the frustration of not being able to do everything is extremely disheartening and makes me feel like I'm failing him. I don't blame anyone facing the total dependence of their PWP for being upset and sometimes angry at the disease. Caring for someone you love and watching them getting worse week after week, changing them, showering them, feeding them, trying to understand what they're trying to say, having to get up every couple hours during the night, wishing and praying that they didn't have to suffer with this disease, it's a lot to deal with. Coming here and venting may be all we can do to help alleviate our sadness and frustration. You are very fortunate and I pray you will have many more years of a pretty normal life. |
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Violet and Flowers, you are both amazing women and your PWPs are lucky to have you in their lives. Yes, we realize that we are lucky in many ways. I truly worry many times how/if he will handle the decline well or at all. However, as I have reiterated...in many ways we are "lucky" to know what is ahead for us. Carl's Mom was a gentle, loving Mom and Grandma, but she suffered with PD for over 22 years, and in the last four, his Dad, her husband, also suffered through radiation and cancer, the death of our daughter, and the sudden death of Cari's brother. Enough sadness in her final years that we didn't tell her about my or my son's cancers. I think that the several nights near the end he spent alone in a hospital room with his Mom was an eye opener and an extremely sobering time for Carl. He watched as she writhed in pain, grimaced, and cramped up so badly he thought for sure she would pass any minute. But, you see, that was enough to make him realize what was in his future, and he decided at that moment he was going to remain as close to normal as long as possible. Reading through the posts, I notice how some caregivers lose patience from depression and lack of sleep...I can empathize completely. But, in many ways, again, seeing his Mom's journey has helped us prepare for the future...Already,we have accepted that there will be times he needs to sleep downstairs or sitting up in a chair; that we cannot plan too far ahead for trips that may not happen because of illness; that he has much less patience than ever before and I need to simply walk away until he realizes he was not in his "normal" state of mind, etc... Flowers, YOU are FAR from failing your husband. You are a loving, kind woman who is exhausted and angry with PD. That is normal and, more importantly, human. Cut yourself some slack. You are dealing with a disease for which there is no cure and you have nothing on which to base your future. Trust me, although we know and saw what is coming, that knowledge does not make us more at ease with PD, but rather it makes us better able to handle the future. Thank you for your loving words. Both you and Violet are at the stage of PD which we know is coming, but have yet to face here at home. When the time comes, I hope I will have an ounce of the patience and sweetness you both exude. That you have the kindness and strength to reach out and help others speaks volumes. Bless you both and bless your husbands. |
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I really appreciate the discussion here. we had a bit of a blow up yesterday. I didn't sleep much last night trying to tell myself I have to just let go of these kinds of things. He gets very obsessed with what I call "little projects". The latest is trying to put a tiny piece of a military pin (it upsets me first that he has destroyed the pin to do this) on his watch chain. He does not have the dexterity to do any kind of fine motor things or the vision (double vision - tries to use magnifying glasses but still can't see) but he tries anyway. Example - he will literally try to put something through where he thinks there is a hole but there is no hole and gets angry at me when I try to tell him. He will sit for hours and hours in his man cave doing these things. Yesterday I couldn't get him to stop and get ready to go to the Derby party that we had planned to go to. After 2 hours of telling him the time and then getting friends to call him to ask him when he was coming, he finally let me get him dressed. This happens A LOT. It is frustrating and stressful to me. I MUST let it go. I MUST decide that if he won't let go of whatever he's obsessed with a the time, then I have to just forget about going. Or just go myself and leave him home alone which of course I'm scared to do. Unless of course he has a doctors appointment. Even those, he doesn't think we should be on time cause they make us wait anyway.  So I'm working on just letting go. I have to keep telling myself that he does not have control of so much because of the PD even tho I think he could try harder. Yes, sometimes I resent that everything in our lives revolves around him. It's always whatever he wants. I feel forced to always do what he wants. Thankfully we do enjoy doing some things together. We love going to yard sales and estate sales - but it's getting harder and harder as he has to use a walker and often stays in the van while I go look around. Maybe today we'll go to a little "spring festival" nearby. But maybe he'll get so involved in another project that I'll sit all day. You'd think my house would be spotless LOL but no. |
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Pinki I'm sitting here reading your post and saying to myself, yes, yes, yes, I know just what it's like. My hubby is beyond the point where he can do any kind of project but he sits at the table with the newspaper for long periods of time reading and sleeping and doesn't want to get up. I feel like I'm on-call continually and just as I start to do something he will call for me and sometimes when I ask what he needs he says nothing. So frustrating not to be able to get anything done. I've started telling myself constantly now that yes, everything is about him because the poor dear can't do anything for himself. I try to imagine just how that would feel and how would I want someone to care for me. It's so, so, hard at times but every once in a while he will have a few moments of clarity and tell me he loves me and smile. Brings tears to my eyes to get a little of him back. For many years we did flea markets and garage sales but then it was too difficult for him to stand and look. I feel like a prisoner not able to go anywhere. Yesterday he slept for a long time and our son was in the house with him so I got to do some gardening. It was so relaxing and I felt free. I hope you can enjoy an outing today. I'll keep you in my thoughts. HUGS |
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Yes flowers, we got out for a bit. Went to an estate sale where he moved very slowly but mostly people just stand by and wait - or move around him. He saw some DVD players - he's always wanting to buy DVD players or VHS players (he has a combo unit on the tv in his man cave) and I have to argue with him about buying something that #1 we already have and #2 it may not work anyway. He argued that it was a TVD player and called me stupid for not knowing there is a difference. I finally just tune him out (when driving I can't usually understand him anyway) and tell him I won't argue any more as he is always right. And yes, that about trying to start something and never getting to finish. I can't even make him something to eat without him calling me. He's always dropping something and calling me to find it. Or to help him do whatever he's trying to do, and later telling me I f'd it up and broke it. Deep breaths,,,,,deep breaths |