For those who care for someone with Parkinson's disease
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I met a great guy in Feb. we instantly hit it off. About a month later he told me he has Parkinson's. I had no clue. He is 51 and has had it for about 10-11 years. It is now Sept. we are still going strong. I have fallen in love with him. I did not know what Parkinson's was. Now I have done research on Parkinson's. It seems tough. However, I have already made up in my mind that whatever comes, I will be there to see him through everything. He has shown me such love that I want to show him the same. Now, that being said. I really don't know what lies ahead for us. Will I become a care giver later? Will he start to have mental issues that could cause problems for us? I don't know. Right now his symptoms are very very mild. That's why for a month, I did not know. I thought he was just slightly fidgety. I just want to be prepared and aware. I am not running away from this. I just want to have as much knowledge and tools and support as I can get now before his symptoms get worse. Thank you so much for any advice! |
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Glad you found this forum! I encourage you to read as many posts as you can. Pay close attention to the emotional and psychological effects the disease entails. If your PWP has an ex, talk to her and find out why. This is not an easy life to cope with. We all love our PWP but the emotional effects alone are reasons to proceed with caution. Make sure you are aware of all the drugs and their side effects. Make sure you go to all the doctors appointments. Make sure you maintain all your friendships and family ties. You will need a tremendous amount of support as this disease progresses. "Eyes wide open" I know this is rather negative but I would hate to see you blindsided. Perhaps others will respond here and be more encouraging? As a side note, I have had a particularly bad week (not just with my PWP). All the other day to day stuff adds up and takes it toll. I wish you every bit of luck and hope that your journey is better than mine. |
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Hi Parkwithus, I'm going to tell you a story. About 7 years ago I met a lovely man. We hit it off right away. I felt "I wish I'd known you 20 years ago." I also knew that neither of us would have known what to do with each other then and that the timing was right for us to meet, and love each other. He came with history and baggage. He was recently widowed, with a pre teen kid. He told me "I have Parkinson's, and a good long-term care policy." We enjoyed each others' company so much. I told myself, "I grew up around people with disabilities. Part of my current work involves disability rights." and I wasn't scared. Within a year we married. We traveled a little, bought a house close to the water, pulled up stakes and began a new life, far from our old roots, far from friends and family. Within a year of moving to the house we loved, we discovered, that the lovely boat would sit in the boatyard, until years later she was ultimately donated to a maritime charity. Over the past five years my husband's Parkinson's has required increasing attention. I've learned to understand and manage his symptoms, address the medication changes, support his PT, LSVT Big exercises, accompany him to doctors' appointments, hire and oversee caregivers. I stepped away from a stimulating career in which I had national recognition ( middle sized fish in a very small pond), and which had given me a lot of satisfaction. In large part due to the effort and attention and caregiving I've given to him, his physical symptoms are not terribly worse today than they were five years ago. But today, his worsening Parkinson's dementia has led me, in just the past week, to thank my lucky stars that his LTC insurance covers an expensive and well-run memory care program near our house. He mostly remembers me, occasionally remembers one adult child more or less knows who the other is. It has been years since I felt that I had a husband who had much of anything to give back to me. Within a year of our move to the house I said to myself, because I would never have said it directly to him "I realize you have nothing to give me." About the same time a couple I've known since I was 16 came for a weekend visit. At one point the husband, a dear friend, gave me a hug of support and understanding. Unexpectedly, in response to the sense of stronger arms around me and someone who had 3 seconds of real emotional strength to offer me, I dissolved onto my other friend's shoulder in tears. It didn't last, and I pulled myself together, but that was the last time that I had a sense that someone I knew that well had something to give me. I know that I have been a very good caregiver to my darling husband, and that he has been healthier than he could possibly have been without my love and care. But I am tired, tired to the bone. When I left the home on Friday and again on Saturday, and Sunday, and Monday (after spending much of the day with him there. I cried more deeply and sadly than, in my exhaustion, I expected that I would. I cried until I couldn't cry any more. Mind you, my husband earned very well, invested very prudently and purchased the best LTC insurance he could find. We have no money worries, and finances have never been an obstacle to his well-being or mine. I do not know how different things could have been without a full time housekeeper and agency caregivers in addition. I do know that this has been hard. Much harder than I expected when we met and married. While I can only say to my husband, as I have when he asked today (his dementia is mostly memory, with executive function relatively intract, so that he can still ask) that it was no mistake to marry him. And I do love him to pieces. But should I have? I truly cannot say. Parkwithus -- I have no advice for you, other than to look inside at your own emotional resources. Ask yourself how it will be for you to be with him for years, when he, because of dementia and disability, has left you, in many of the ways you, today, anticipate being together. Should you stay with him? I truly cannot say. Having written all of this, I undoubtedly will question whether to leave it up here for more than a couple of days. Once you've responded, I may well alter it, or take it down all together. I wish you good luck, but even more, I wish you good discernment and the restraint to avoid an impulsive decision. VV |
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Parkwithus, I also hate to give you a negative point of view. Love does not conquer all. My hubby and I have had 40 good years. I love him with my all. He's been my rock and I couldn't have asked for a better, loving husband. He was diagnosed in 2008 and now he has progressing Parkinsons and Dementia. He seldom talks, is incontinent, can't lift his legs in or out of bed or get up out of a chair. He has some terrible nights and days. My love for him has been long and lasting. Even with all that love I find myself depressed and wondering how I will get through this with him. I pray constantly for patience and compassion. I won't quit, I'll keep fighting the fight with him but I shed many tears of sadness for him and frustration and shame for myself that I'm not strong enough to deal with this horrible disease. No one is prepared for being a caregiver to the extent it can become. I guess when you're in love you can't really see the dark side of the future. Good luck in your decision. |
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I was where you are now when I came to this board ten years ago, parkwithus. In fact, it might be interesting for you to read my very first post - linked just a couple of posts below this one. The board was a very much more bitter and angry place then. There were a lot of very ugly things said when I came in and said I was choosing life with a PWP by choice. Many people told me "if I'd known he was sick I wouldn't have married him." Well, Dear Reader - I married him. It's ten years later. It hasn't been perfect. The kids I came with are grown and raised and he's had to retire early on disability. We have had our challenges. But his disease has moved blessedly slowly. He can drive, putter on hobbies, do the grocery shopping, etc, with some care paid to how many 'spoons' he is expending in available energy. We aren't to full blown caregiving yet, and I still work full time. We are making a point of doing the things we want to do because we understand so keenly the scarcity of time. Sometimes I think that alone makes the time we have sweeter. I know what's coming. I have spent a lot of time looking into the road ahead to try to prepare for it. I also know probably nothing can prepare me for reality. Sometimes I feel like I might die if I lose him. And then...I remember he's still here, and I need to not borrow tomorrow's troubles today. Any one of us could lose our lives in a moments time. Nothing is guaranteed. At least there's a roadmap for PD, and good friends like those in this group to help you get through. I wish you the best of luck. Make your own decision, with your eyes wide open. That's my best advice. |
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Wow! I had NO clue. First I want to thank VV and say please don't take your message down. I read everyone's messages, every word and I want to thank all of you who responded. However, I was completely unaware of any of this. I mean I have read the medical side of things of what 'could' lie ahead. I went to a Parkinson's symposium with him and looked around the room at some of the others and thought, could I take care of him if he was 'that bad'. However, nothing made me look at the caregivers and everything they had to go through. I did not know what responses I was looking for. I am glad you all wrote what you did. I don't see any of it as particularly negative, I see it has real. I appreciate all of you being real with me. I had not read any other topics on here yet. I saw the forum, signed up and made a post. I will now go and read topics from others. Please, others continue to post to me. I had not really thought of what would happen if he can't 'xyz'. I do love him. Right now things are very good with him. I am 38 and divorced. He has been there for me. He has his house, I have mine we talk of how it would be if we were married. He came into my life at a wonderful time. He has shown me love, attention, great sex and very caring of me. What happens to people with Parkinson's when others leave them? It would be so so sad to leave him because of it. I guess I really was clueless. He mentioned before the reason why he has been single for so long after his divorce was because when others heard he had Parkinson's, they would break it off. I thought, oh that is awful. I can't imagine him being alone and going through this. However, I can't imagine myself wishing I had not made the decision to stay and then my own health declining and feeling miserable. I got divorced because I was miserable (he cheated). I am looking forward to a good strong loving relationship. I thought I found it. I will spend the rest of my life wondering no matter which road I take. I am hoping early onset and very few symptoms means he will continue to be ok. Maybe I'm just being naïve. |
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Parkwithus: My wife also had a very slow progression of physical effects for 12 years (her tremors are still well controlled by Sinemet). However, as is quite common, she then began about 2 years ago to develop cognitive problems, dementia with hallucinations.. I'm confident that most caregivers will agree that the strain of dealing with the physical is trivial compared with that caused by mental issues. You should buy or borrow the book "Making the Connection between Brain and Behavior : Coping with PD" by Joseph Friedman. I am concerned that you and your potential spouse's relatively young ages might point to a very long period of high-stress coping. As you suggest, I would scan through almost all of the previous Forum postings. The best of luck to you, whatever you decide! |
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I am reading through this thread and thinking that a compilation of it could be added to the Forum on this site as a resource for people who, like parkwithus, are wondering about starting a relationship with a person with PD. It summarizes what would otherwise be found in years worth of postings. Also, I wish every young MDS or neurologist, every geriatrician, every family practitioner and every PT/OT and other helping-professional could read it. I know my husband's MDS, who is clinically very good, has no clue about all of this. None. In all the years only one doctor (a female geriatrician-in-training) said to me "you are doing a good job." Jim, other posters, is that possible, wise? VV |
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I concur with what has already been shared. May I add a few other things to consider. The lion's share of dealing with doctors will sooner or later fall on you. This includes: - ever increasing number of appointments to be scheduled, driven to, and when with the doctor listening hard to understand and be able to follow through. You must muster up patience dealing with paperwork, staff and computer systems that seem designed to impede progress and frustrate you. - keeping track of ever increasing medications. Ordering refills on time so you don't run out, dispensing on a demanding schedule (my PWP takes 19 pills a day spread across 5 dosage times), ensuring the pills ARE taken, planning meals/snacks that don't interfere with absorption (this includes both what is eaten and when it is eaten). - laundry, laundry, laundry. - reprioritizing household budget so handymen, craftsmen, lawn care, etc. can be hired and paid. This happens slowly, but one day you realize he can't handle any of the honey-dos he once cheerfully took care of for you. - gradual loss of daily skills beyond bathing, shaving, etc. He can't deal with phones: either dialing or taking accurate messages if he should answer the phone. The tv remote is a challenge. My guy will sit for an hour scrolling one channel at a time never stopping to see what's showing. The manipulation of the remote to use lists, record, fast forward, rewind...all beyond him. - the loss of his driving ability. This has a huge impact on his self image and adds huge demands on your time. - Then there is the daily "Easter egg hunt." That's our way of laughing about his misplacing things. Spatulas in the refrigerator drawer, juice pitcher in the trash and trash in cabinet. - Keep in mind that as his abilities decline, the same amount (or more) of work remains and it's up to you to pick up the slack. Offsetting these comments is the commitment to help the person you love. We were married 48 years ago. We had a very good marriage. But he doesn't bring me flowers any more. |
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As I did ten years ago, I'm going to leave a gentle reminder here. Those laundry lists of struggles can be found on nearly any "someone in my family has a chronic illness" board. Additionally, most of those issues happen to all of us in old age, PD or not. It's a crapshoot at best to gamble on getting into later life without challenges, and most couples cope with the chronic illness of one or both parties at some point. If we all stayed single because it will be hard at some point, the human race would die off! Here's the deal - everyone's PD is different. Some get bad quickly, and have all of the worst possible symptoms. Others have a long slow arc, and might never get dementia, etc. Because there is no way to predict that, I know you guys mean well but it's not an accurate picture to paint that everyone's experience will be like yours, and it does a disservice to PWP who want the same thing everyone else does: love, belonging, a family. Absolutely partners should thoroughly educate themselves. And yes - it's going to be difficult. Life is. But many spouses of PWP also agree that they wouldn't trade their husbands for anything. I'm against posting a reference for "here's how your life is guaranteed to stink soon". Let them search through the posts on this board and see the breadth of how PWP's disease presentations vary. I'm sorry to disagree with everyone. I just feel pretty strongly about this subject. |
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Marikvah, I had to laugh at your "Easter egg hunt" reference-what a great description! This morning I found the package of hotdog buns on the kitchen counter, ripped open like a rat had been in the house...and half of every single bun torn off (not cut) and missing! The sad remains of the leftover bun halves were still in the package, looking lonely  Oddly, all the hotdogs were still in the fridge, uneaten. Too bad we can't use the hotdog buns, unless we want to cut every hot dog in half! I'm going to remember your cute Easter egg hunt description the next time something goes missing, thanks
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I absolutely agree that every single case of Parkinson's and indeed ANY disease is different because every single individual has their own unique makeup of genetics, inclinations, opinions, well-being and anything else you can mention. If you read here, as I gather you have, you'll find stories of great positivity and hope and stories of challenge and frustration...and sometimes these can be from the same poster, because just like with any situation each day is a different day. When two young people meet, they do not tend to think way ahead and ponder what would happen if either of them developed a serious condition. Many of us, looking so far ahead, might see grandparents who have this or have that but it's so many years down the road, it doesn't...thankfully...stop us from living and loving and making families together. When two older people meet, perhaps they also are not looking too seriously ahead. We do all realize that age can bring challenges, but perhaps we are also comforted by the thought that together feels stronger than apart, so challenges could be faced and, if not conquered, at least handled. But when two people meet and one of them already has a challenge in place, the other person truly does need to consider all sides of the issue. Because the reality is that the time for facing something together is right then. There is not any other option. It is happening. My story? I am 55 and my dear husband is 65 and we have been married almost two years. Yes, a second marriage later in life. He was diagnosed earlier this year. I realized when I met him that there were what I considered quirks. And I was sure he found some in me! After all, being our ages and having lived on our own for some years, quirks happen! I did not think they were more until maybe six months after our marriage when the quirks become symptoms and the symptoms became more pronounced and ultimately the diagnosis was Parkinson's. Violet's post touched me because my darling husband is also slipping away from me more mentally and emotionally than physically. The progression has been startling. Our dynamic has changed. We still love each other, very much, but I am in a completely different position than I was nearly two years ago when we exchanged vows. I promised to love and honor and cherish in sickness and in health, and by golly I am keeping that promise. Would I have made that promise knowing he had Parkinson's? If I had met him later, if his diagnosis had happened before we were married, would I have made that promise? You know, I can't answer that. I can't answer it because I love him, because no matter what things are like now, somewhere in my heart are the dreams I created with him when we stood in front of our families and our grown children beaming happily and promised. But things have changed, and those dreams will not happen the way we thought. My lover can no longer connect with me physically. Our conversations are marked by his confusion and memory loss. We no longer sleep in the same bed because he also has RBD...REM Behavior Disorder. His posture and demeanor is that of a much older man. I care for him...in all ways. I care about him and I care for him. That's all I know for sure and that is what keeps me keeping on. The promise I made, the love we had, the love we still have. What should you do? I don't know. Blessings to you as you decide. |
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I've been giving a lot of thought to this post. When we have a relationship with someone it's now, today, the future is unknown. If that person has a disease when the relationship starts then you know what the future probably may bring. And not every person with Parkinsons get Dementia but a lot of people without Parkinsons get Alzheimers/Dementia. No one knows what the future holds for us. I've had 40 wonderful years with my honey and that certainly outweighs the difficult years we are now living. I guess I'm thinking that if we find that person who gives us happiness, warmth and love we shouldn't throw it away because of what might be. As with anything we do for the long term we just need to have our eyes wide open. |
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I just wanted to say that this thread has brought to the front some thoughts and feelings I struggle with . We met 16 years ago and married 11 years . He was dx at 68, now 70 this month . I'm 66 . Tony's tremors are ok now with Meds but cognitively he is going downhill . I also am a trained nurse and worked for many years in the geriatric field in both hospital and in home care. But this is different . Before I went home to a "normal life " When he was finally dx ( and I stopped crying ) and I knew for about 5/6 years something was wrong I thought " ok we will be fine , I know what to do and how to do it " but it's the 24 hours every single day that is scary . It's thinking I'm 66 , gee that's a long time ahead of me. And Tony is still pretty good in lots of ways but little things like his alarm will go off on his phone for his Meds, he will stand up and sit down again , or the latest thing... Out of the blue he will start singing nursery rhymes! He is word perfect but can't remember a conversation we had yesterday . Gotta say does my head in but cracks me up as well . I had breast cancer 5 years ago . Tony stood by me every single day . Never complained. Worked 6 days , came home and did the housework etc. listed to me cry ( endlessly !) held me at night for hours . 5 operations later , chemo , reconstruction .. It was 2 years out of our lives. So for me there was no question , I will care for him as long as I can . BUT we have talked about the what ifs.. What if I can't look after him any more. What if I get sick ? Just what if . I have POA now for both his medical needs and his finances. We have tightened up our wills . I just felt that the road ahead was going to get harder , I needed to have every thing in place that I could . We have a great team of neurologists, occ therapist , Physio, etc etc in place. I'm already getting the carers pension. People coming out next week to do more paperwork ( I'm in Australia) to get " my aged care" assessment done. So that we can get services in if needed or he could get a respite bed if needed on short notice. So I guess what I'm trying to say if you decide to stay , be pragmatic. Get everything organised, get as much help in that you can , get yourself educated about what is out there . Get yourself known to the social workers . Better now rather than later when your exhausted and he ( possibly) will be resistant to help/ers. |
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Michelle (MyLove), thank you for your comments. You know I agree with all you have said, but this time I decided to wait and see what others wrote before I commented. Here goes  To those of you new to the boards, my name is Jane and my PWP is my husband of fifty years, Carl. He was diagnosed ten years ago and is doing quite well. We live a normal life, in fact he is outside right now roofing the pool house he designed and built himself! Does he have bad days? Yep. He has tremors, but told his neuro not to increase his Sinemet yet. He prefers to live with the pain and tremors, rather than take on the side effects. He does still take Requip at a low dose, which makes his OCD worse, but he has always been one to shop and spend money..since we were frugal during our fifty years, we are doing just fine and living through his sometimes wild spending sprees! lol Have I noticed changes? Of course...he is almost 70, shouldn't we change as we grow older? I agree with Michelle, it would be wrong of anyone to tell any caregiver what their life will be like in the future. Each person is different. Carl's Mom had PD for 22+ years. but never a tremor! He is exhausted from his constant movement. But, then again, he simply has chosen to fight as long as he can and as realistically as possible. He walks, does Tai Chi, Rock Steady Boxing, and keeps planning and building our back into a Paradise...we put in a pool, etc...all of which he designed and monitored, if not did the actual work himself. Is that "normal" for a PWP? I don't know, but for us, it is our normal. We have had a great many illnesses plague our family, so we come prepared to deal with PD. We do our research, rely on his neuro, and know the future is uncertain. We have accepted PD because we know we cannot do anything about it. As Michelle has stated, we know life may not be as we planned, but we want to face the challenges together. I do agree that you need to make your own decisions as to what you can, or think you can, face knowing there is uncertainty ahead. However, some 34 years ago last week, no one could have prepared us to see our oldest, then 15, on life support for three days. We lost her, and our lives changed drastically. Again, uncertainty. I do hope that being part of a support group, planning ahead realistically, learning to ask for help if you find you need it, and accepting you cannot change that which is going to happen, will be part of your planning. As several have stated, NO ONE can predict your future lives, but *we* choose to live life to the fullest as long as possible and to be accepting of the limitations and changes that occur sometimes daily. No one has asked for this horrid disease, but no one should be blamed or shamed for having it, either. As Carl always says, "Onward and upward...it's life." Jane |
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VioletV-- This discussion is best @ this thread. I'm afraid segregating (creating a separate place on the site) would have the opposite effect that you're looking for...folks would not find it easily. Jim |
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I don't post very often, I mostly read the threads both here and on a Parkinson's Caregiver Facebook page. My husband (pwp) and I have certainly had our ups and downs through his diagnosis 6 years ago, especially the last 2 years. It is hard being married to a person with Parkinson's. I am so lucky that we are not at the point where John needs constant care. His main issues involve freezing and balance. We had a bad scare about a month ago when he fell in the garage right after my daughter went to work and because of the hard fall he did not have the strength to get himself up. He was on the ground for 9 hours until we came home from work. He was in the hospital for a week and rehab for a week after that. We are so lucky that he did not suffer any lasting effects from the fall. What the fall did do is it opened my eyes, a lot! After 24 years I am so grateful to still have him by my side. I know at some point I will need to put him in assisted living. I know where I want him to go at that point and I know we will both be fine. Having the plans in place I now just focus on the present instead of worrying about our future or dwelling on what's happened in the past. Its healthier for me as well. My anxiety and depression symptoms are all but gone even without medicine. That said, of course you need to go into any relationship with eyes wide open. Only you can know what is right for both of you. I also suggest that you start going to a support group early on if you can. It makes a huge difference. |
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I have read every post here. Some I have reread over again. This is really not what I expected at all. I do know that some of you... when asked if you would do it all over again, are unsure. Maybe some would feel guilty if they said no because it would mean your loved one would be alone. That is how I feel right now and we are not even married nor are his symptoms bad. Or, maybe some are just kind of used to the way things are in a way. I don't want to get 'used' to being treated poorly even though I would know it was the Parkinson's. I am so glad for all the stories and comments. A whole lot of food for thought. Right now at 38, I want to have fun with him and live with excitement for the future. I want to travel and build something strong and loving. I enjoy intimacy and although I do understand that as men get older, things are not the same. But, this seems like it would be a different matter entirely. I just can't help but wonder if I go this way or if I go that way. I know our relationship is getting closer and stronger. I have no doubt at all that he will ask me to marry him maybe a little after our year mark of dating. I know it would be different if we were already married and he got this horrible news. My heart aches for him. It seems like a person with Parkinson's, if not married already, can pretty much give up on finding the right person that will understand and be there for them. Leaving them all alone with no advocate and at the mercy of paid caregivers. I wonder what would become of him. Before I knew anything about Parkinson's, I thought I could do it. The more I read the less I am sure. There does not even seem to be a middle ground or comprise. Either we will get to live our dreams, or we won't and I will take on caring for him. If it's not the physical, it's the emotional, well both in most cases. I know everyone is different and he may turn out to be one of the lucky ones. What do PWP who are alone do? Do they check themselves in somewhere before things get too bad? I would just hate that for him. Then again, it seems like caregivers live in their own kind loneliness. The nurturer in me would drive myself sick doing everything for him, taking care of him and then not looking after myself. I tend to do too much for others sometimes as it is. I am just taking a huge leap of faith that if I do stay, I can weather whatever comes. I pray his symptoms and effects can hold off and give us more time. He has few symptoms, very sharp minded and very loving. I found a great guy with just one curveball... Parkinson's. I just want to hold him and cry. |