Helping Those Who Care for Parkinson's Patients
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My husband of 27 years is 67 y/o and was diagnosed with PD 4 years ago. Our relationship was not wonderful before his diagnosis, but now it is really strained all the time. I work 3 jobs trying to keep us from losing our home and everything else we have worked hard for all of our lives. Joe has not worked in 4 years and has not driven a car in over a year. We have absolutley no help or compassion from Joe's Neurologist who, when he sees us once every 6 months, acts as if everything is perfect. Joe wrote an email to him recently and concerned that his tremors in both hands were much worse lately and maybe it was time to increase his medications (he takes Sinemet and Mirapex), and his doc wrote back saying he should lower the stress in his life and his tremors would be better!!!!!! Isn't that the most ludicrous thing you have ever heard???? I just don't know what to do..... There are no support groups in our area, so I am alone with all of this. Everyone seems to feel sorry for Joe, and no one ever thinks about how it has affected me. I am 61, and feel young still. I am healthy despite the stress in my life. Joe has not incentive to do anything. He never remembers to even take a shower or shave or change clothes unless I remind him. Even then he does not always do it. I am gone working a lot (I now work at night so I can be home most of the day), but I never know what I will find when I arrive home. I read that most of you care for your Dad's or other relative.....is there anyone out there that cares for their husband? I really need someone to talk to about my life......can't afford a therapist.....maybe someone who could offer suggestions or just listen. I sometimes feel like I can't go on.....anyway - thanks for this forum and glad someone cares about we who are caregivers. I know all of this sounds so selfish on my part.....I know Joe is suffering......I just know I take care of all of his needs, our needs -everything and feel so used up most of the time. Sincerely, Donna in North Carolina |
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| I am the caregiver for my husband and I can hear what you are saying. I'm not sure I will be able to give you advice but I can listen. It is important to be able to "unload" sometime. My son and his wife life next to me so I go to them and it has been a big help to me. Even when it seems like a small thing to others it is huge to us when we have to live with it day after day. |
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| Donna, have you considered putting your husband in a facility that can care for him? I don't know how you can do ALL of this without any support. It would be too much for anyone. Being a caregiver is something people have absolutely no idea of until they walk in a caregiver's shoes. I sure didn't know what I was getting into. Please look into options where your husband's needs can be met but yours as well. Hang in there! Keep writing this forum for help and venting. God bless, Mary |
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Hi, Donna Welcome to our board and I know that we can be of some emotional support to you. My husband died last year after 17 yrs with PD. The last 3 yrs were total care because of the advanced stage of his disease and the dementia. I wanted to hit people who kept saying "poor man" and there I was doing everything. If I complained or got angry I was a witch. You expressed very well what many of us have or are going through with our husbands. It is so very hard and you do begin to wear down quickly when it is all on your shoulders and there is no help. The financial pressures certainly do not help. If you email me at annwoodln@aol.com I will send my paper on caregiving to you. It really has no answers but does let you know that you are not alone. At this point you need some help. Check into daycare facilities for individuals like your husband. Many communities have these. Call the Dept on Aging for your area. Contact Catholic Charities to see if they have sitters or any type of help for you - you don't have to be Catholic to avail yourself of the services. I am not terribly surprised at the attitude of the neurologist - it seems to be a common problem with many of us. He sees the patient every 6 months and has absolutely no conception of what you are living with on a day to day basis. I had a wonderful experience last Sept. when I gave a talk on caregivers to a large group. Sitting in the front row was my husband's neurologist. At the conclusion of my talk he was not happy - doubt that I will be invited back. You can change neurologists but that may not be any better. I wonder if your husband shouldn't be on an anti depressant since his attitude seems to be that of a depressed person. You will never be alone as long as you are here. We tend to understand and will support you in any way we can. |
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Hi Donna, I too have been caring for my husband for over 10 years now, he is going to be 80 in June and I am only 62. Being a caregiver is one of the hardest things you can do. You are supposed to take care of someone you love, watch them die a slow death, put up with the bs from drs and others, including your husband, and all of this with a smile. Everything is on your shoulders and sometimes you just colapse from the weight. We are here for you, we all know what it's like and just knowing that you aren't alone in this helps. It's a rollercoaster ride, one I didn't want to get on but now that I'm on, there is no getting off. |
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Hi Donna and welcome. I also have a husband with young onset PD, dx'd three years ago. He was 43 then. It is a difficult path made much harder with the two very young kids we have. Children add a whole layer of difficulty and emotional torment to this disease. I hope you do not have kids at home, it sounds like you have enough on your plate already. I echo that you need to take care of yourself. I don't know how you fit that into your already insane schedule, but somehow you must or you will lose it completely. If there is a facility in your area that can offer you a break, contact them and set it up. If not, and you can afford it (and really, you can't afford NOT to) hire a sitter so that you can get a break. Sometimes you have to be selfish (ie, making sure you take care of yourself) so that you can be selfless (ie, caring for your husband). Don't feel guilty about it and realize it is necessary in order to continue as you are. So easy to say, I know. Also, don't forget to give yourself a pat on the back for everything you do. A huge number of spouses leave the marriage due to the stress of PD, and you are sticking it out. There is a lot to be said for that, and you should at least get some warm fuzzies for all that you do. I also take comfort in being as proactive as I can. I nag my husband to exercise, stretch, take his vitamins, eat right, nag, nag, nag. I have no control over so many things, but the few things I feel I can influence do make me feel a bit better. This may help you as well. And never feel uncomfortable coming here. As we all know, someone here has been there, done that, and there's nothing we can say that is too gross, embarrassing, or ackward. That, in and of itself, is comforting. |
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PD came in here about 17 yrs ago but the last 5 yrs have been the hell part so far. He is 84 this year and now is mostly incontinet, and a different person than I have kown. Today was a very heavy day--my business is not doing well at all and that is what we live on. PD took a lot of what we had, so now everything is up to me. Two of our children help when asked and one stops in, not to really help and would not take Dad for a ride to the store and one will not do anything. As someone else said it is always poor him--will I clean the urnal and the messed bed and pants and listen to him have a fit because he is in the car and has to pee and wants to go home--he was the one that wanted to go. I know some of what your dealing with and I feel for you. If you need to talk or yell or cry, feel free we will be here. This forum has been a BIG help to me, like today when I would like to just walk out the door but I don't have anything left and I can't just walk out on him even when I want to. |
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Donna, So glad you found this board and hope it helps you as much as it's helped me. My husband is 63 and was diagnosed with PD seven years ago. I strongly agree with annwood about the importance of checking to see if your husband would be helped by anti-depressants. My husband is on two different ones--and my understanding is that a lot of PD patients suffer from depression and can be greatly helped by anti-depressants. It's certainly helped our situation. As for the neurologist, we experienced a similar lack of compassion with the first one who treated my husband. Needless to say, we switched to another one who's far more caring, compassionate and responsive to patient concerns. Check around and see if another one might be a better fit for you. Best of luck and keep in touch! |
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| I would strongly encourage you to find another neurologist. Your current one is not meeting the needs of your husband. Second, check to see if you have a local jewish community center close by which offer day programs. They are very reasonable and offer activities to keep the clients busy. I think your husband may be just bored. My husband does so much better when he has someplace to go which offers mental stimulation. |
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| It took me along time to get my husband the Neurologist (specialized in movement disorders) that cares for him. I can call him anytime and get direction for the many issues that arise. My husband has had pd for 19 years and he is 55 now.I was dealing with my husband alone and it did make me go crazy. I was working full-time and he wasn't contributing anything to our life and I was overwhelmed with keeping everything together alone. I have found that pd effects a persons-so called executive functions, such as planning, organizing, abstract reasoning, problem solving, ... the individual's cognitive, language, behavioral and motor functions. PD stopped my husband from being able to do anything and he ended up watching tv all the time and sleeping, which made him weaker and fall more. If I maybe so bold to say, please look for the phone numbers of any "state or local social service office" "social security administration dept." and find out what services you qualify for and start getting help with your husband even if you don't know what help you need. Help will give you back some peace. |
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Donna, I'm in South Carolina and it took me a long time to find doctors and support. I did all the paperwork to get him disability and Medicare and Medicaid. I sleep in another room just so that I can get some rest, even though it's usually broken by sorrying about him. Please call the Parkinson Alliance of the Carolinas because they have been helpful to me: http://www.parkinsonassociation.org/ |
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Hi, You are not alone. My husband was diagnosed eight years ago at age 49. We lived in Alaska at the time and the speciality of neurology was fairly limited up there. We moved to a suburb of Chicago around five years ago because of his job transfer. We started to go to one well recognized hospital- but I too was dissatisfied with the neurologist. I did a great deal of work on the internet to find another neurologist- whom we both now love. She does not hurry him through appts. There are several Parkinson's research sites connected to hospitals around the country. I would recommend you surfing the net and not hesitating to change physicians. Also since with PD- you do not have monthly apts.- you might just have to take a long drive to get a cutting edge neurologist- many great neurologists/hospitals are associated with leading universities. As to your other concerns- I am resigned to the fact that I will be the primary caretaker during the final stages. I do kinda think that most people do not die quickly so we are not alone in that there are many caretakers out there. Sometimes I am in despair like you. Since we have been transferred a lot- I have made friends but they are not deep friendships. My kids have their own issues. Maybe there will be some hope with new medications or stem cell research. Take care of yourself exercise to relieve stress. Best Wishes, Michele of Naperville, IL |
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I suggest contacting a social worker. They can assist you on whatever road you decide to travel, be it moving your husband outside the home, having someone come in to help you or helping find you a counselor. Social workers are a God-send ... call today. They do the leg work to make your husband's life and your life better. And you can ask your primary doctor for another neurologist, one who cares. Don't be afraid to change. Sometimes that too can be a God-send. You deserve abd need TLC. I think asking and finding help can be difficult... there are some wonderful recommendations on this board, I see ... good luck with your forward movement. Joan |