Helping Those Who Care for Parkinson's Patients
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Dear all, I am new to this forum and I would appreciate your advice. I am in my early 30s and I have fallen in love with someone who is quite a bit older and has been daignosed with PD two years ago. We dream of having a family, although he is worried that he would deprive me of an easy life and of the most productive career (which is really demanding). Am I too naive and idealistic wanting to take this on? I have read a lot about PD and really want to make his life easier... But I also know that I can not realistically estimate how hard it would be. Thank you in advance for any thoughts you would want to share with me. t. |
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You could go back and reread my thread from almost exactly a year ago (http://www.myparkinsons.org/cgi-bin/forum/topic_show.pl?id=1301) if you want to know the advice you'll get about willingly dipping your foot into the pool of a relationship with someone with a condition like PD. But before you do, let me say this: Don't give up hope when you're faced with all of the people in the world that will tell you that you're crazy. The reality is that there *are* a great many challenges. You would still face those challenges if your love was diagnosed two years *after* you got together and you hadn't known it from the start. Read, research and talk to as many people and sources as you can find about what the future of his diagnosis holds. There are a great deal of scary things that may or may not be upcoming for him. PD is very individual. There is a constellation of symptoms that are associated with the disease. Not every person has them all, has them at the same rate or degree, or in the same time frame. No one can predict how difficult or easy it will be. It will be both, sometimes at the same time. You will hear a lot of 'worst case scenarios', particularly from caregivers who went to the well of their love time and time and time again until they were worn to the bone, and still kept giving. There may come a day when you, too, suffer from burnout. These are the realities. If you are seeking a family with this man, prepare yourself for the eventuality that at some point you will be in essence a single parent. This may happen after the kids leave home (ideally), but in your case (and mine), more likely while they are still there for you to care for. I believe that children can live with and understand the complexities of having a parent with a chronic illness. Millions of families live with conditions like epilepsy, diabetes, Alzheimers, lupus, cancer and more, every single day. These families can be every bit as functional as families who are blessed enough to enjoy perfect health. But realize that you will have to be twice as strong, because he will come to rely on you as the children do. When your friends and families chide you about taking up with someone with a 'terminal disease', remind them this: LIFE is a terminal disease. At some point in life, we ALL will experience bodies and minds that don't function like they should, like they used to. For some it's worse than others. One would hope that their families and friends would not abandon them at that point, simply because it was too 'difficult'. I, and a couple of other posters out there (and many more who aren't on this board), am living the life that you are contemplating. A year ago, I moved in with my DH, who is 11 years into his YOPD diagnosis. I have older teenagers, so it makes it a little easier. They've come to understand some of his limitations, and though we make some accomodations, I don't believe we suffer any from a lack of enjoyment in life. I find comfort in talking to other spouses with partners with YOPD, who aren't to the 'caregiver' stage yet. I found that they are in a closer place to where we are, and aren't too burned out yet to offer hope. If you really, truly, wholeheartedly love this man, and you've done all the reading and the research and know just what is and can be involved for both of your futures, please don't turn him away just because he's 'flawed'. That was the single most heartbreaking concept that was presented to me when I was in the searching for answers stage that you are in. We are all flawed. Make your decision based on love and information. Take in everything the long-time caregivers will tell you... the information is invaluable. Keep tuning into this board, so you can get some idea of where the rapids are ahead. And please keep in touch... those of us in this boat can use any additional perspective we can get, and we would welcome you to the community. |
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Mylove, can not thank you enough for your strong encouragement. I don't want to push him away. It is quite the opposite. He sometimes goes through phases of feeling that he is 'flawed' and all I ever feel is that I want to help him realize that no disease will take away from him who he really is. Essentially everyone around me tells me I am crazy... Some people don't say it as strongly as others... But I don't think anyone truly understands...with the upcoming decade being the most important for my career, with everydy's belif that I should have no trouble finding someone else to fall in love with and have an 'easier' love. I do realize that I simply can not truly appreciate how hard it may get. But I have this feeling inside that this is the right thing to do. Thank you for telling me to follow my heart. To be honest, what I am personally truly worried about is something other than any objective hardship I may face. He is a very good man and he deeply cares about me. And as a result he is very self-conscious about not being able to provide me with the life he feels I deserve. I tell him that I walking into this with my eyes wide open. But I can not chnage the fact that he feels bad. And the worrisome trend has been that in some circular way that makes him feel worse about his disease than he already does... Same with the issue of kids. I am prepared to essentially deal with them myself. I don't mind. He wants to have kids with me very much. At the same time though, he is tormented by the thought that he wouldn't be able to contribute equally. So what I am struggling with is figuring out whether in an ironic twist whereas I am hoping that my love for him would give hiom strength what I am in fact accomplishing is making him feel worse about himself. Is my relative youth, energy and ability to handle a lerager share of the needs of a young family would be too much in his face? I deeply love this man and the last thing I want is to make him feel worse.... I am not sure how coherent I was... There are a lot of thoughts that I have going through my mind. I am very determined to take this on in life... But with everyone else telling me I am nuts, I started to wonder... I also felt it was my responsibility to him to make sure I think about this as much as I can sso that he doesn't feel responsible in any way for how tough my life gets later and so that I don't get 'surprised' as much by things being harder than I imagined. |
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I am married to a wonderful man who was dx's coming up three years ago, and we have two very young children. Here are my comments, and I apologize if they sound a bit cruel: 1. First, I would NEVER knowingly have children with someone with Parkinson's. This has nothing to do with how much you love each other, but everything to do with whether that innocent child might also be afflicted with PD. They are finding more and more genetic links to PD and if you don't believe me, go to places like Young Onset Parkinson's Association and Patientslikeme.com and you will see a HUGE number of those posters have inherited PD. If I had known my husband was going to have PD, I really do not think I would have had children. We would have adopted maybe, but I would not have deliberately risked bringing another person into the world who might suffer as much as my husband is suffering now and will suffer in the future. Think about the child here. You cannot assume modern medicine will find a cure in time for that child, either, because, well, look at where we still are today. I won't even go down that road. Every time your child was tired, nervous, or sick, you would wonder in the back of your mind whether it might be the beginning of PD. I could never live with myself if I took the risk that the child would not get PD and lost. 2. IF you have kids anyway, be prepared to be a single mom. My husband is barely three years into this journey and I can tell you he cannot help at all. Be prepared to do ALL of the following ALL of the time (unless you have tons of money and can afford a nanny, maid, etc.): dress your kids, bathe them, help them with their homework, take them to every activity they are in, prepare all meals (including lunches they take to school), drive them to and from school, read to them at night, and put them to bed. Oh, I forgot shopping for all the birthday gifts they have to have for the parties they are invited to. Do not expect your husband to be able to take the kids to the park on the weekend to give you a break, or anywhere for that matter. You will be it. And if you still have friends yourself, forget about getting together with them in the evening or weekend because unless you get a sitter, your husband will not be able to take the kids so you can get a break. This is reality for many, many spouses of parents with PD. 3. Another issue that is very hard for me: children need BOTH parents! I cannot count the number of times I have watched my young son beg his dad to play with him, read to him, watch a movie with him, and he simply cannot. The disappointment on my son's face is unbearable to see. Telling or reminding a child his parent is sick only goes so far when that little child simply needs his parent to love him and spend time with him. While it may help that child, down the road, be more compassionate, and kind to others, etc., because he or she grew up with an ill parent, I think if given a choice ALL children would have preferred growing up with healthy parents who could be there for them. There are a million ways to teach a child compassion and empathy, kindness and understanding, without imposing such a situation upon them. And unfortunately, there are lots of kids who don't grow up more compassionate having grown up in this situation, but are resentful, angry, and pissed off at the childhood they missed out on. Keep in mind that every soccer game, play, piano recital, choir concert, you in all likelihood with be the only parent there. 4. You will also be the one who grocery shops, plans and prepares meals, cleans the house, does all the laundry, manages all the finances because the PD meds can wreck your savings if you have any or worse, put into into financial ruin with crazy debt he may run up (or not crazy debt-have you looked into how much it costs to have and treat PD? It is a small fortune and that is if you are lucky enough to have insurance). I could go on and on but you get the idea. It is one thing to marry someone with PD and live together for the rest of the journey, and if you have found someone you are madly in love with, great! Many healthy people never find that. But children are another matter entirely. Sorry if this post is a rant, or sounds mean-spirited, but I truly mean well and hope that you do not take offense. I know it must be hard to be in your situation, and I wish you all the best. |
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AMEN! my hubby was dx'd with PD 15 yrs ago, when our kids were 10,9 & 3. he could not do many of the things you mentioned. I have raised them. THEY always wondered what was wrong with THEM that Dad didn't want to do things with them or be a part of their lives. it is getting better as they get older...but it does affect them greatly. Pat |
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Dear all, Thank you very much for sharing your thoughts. It is a tough realization that kids may be truly damaged by growing up in a family like that and there will be some really hard decisions for me to make early on. t. |
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I have attempted to stay out of this thread because I made my thoughts well know earlier in the year. Lurkingforce, you are right on the money with your comments. Personally, I would never marry someone that I knew had PD. Perhaps that is because I know the pain,exhaustion, stress, grief, sorrow and loss that would result. I have been there!!! I also believe that knowingly bringing children into that situation is very selfish and not well thought out. I have been in love and I know how that can cloud your judgement. PD is not something that is going to get better and thing will not be rosy ever after. At the very least get some couples counseling before you do this. |
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Tatyana, For what it's worth, Parkinson's Disease has robbed my daughters of the kind of loving father-daughter relationship they deserve. I would never have knowingly subjected them to the kinds of things they've had to endure as teenagers because of his PD for the last 7 years. Before he was diagnosed with PD, he was their hero. Since the diagnosis, on many occasions, his behavior has caused tears, heartbreak, embarrassment and hatred. It's often seemed as though he were a stranger to all of us. While he was taking the Parkinson's drug Mirapex, he secretly lost hundreds of thousands of dollars due to internet gambling. This was before the drug came with a warning about the possibility of gambling compulsions. His loneliness and desparation because of PD led him to start up several internet romances which crushed me and our daughters when they came to light. His anger caused him to chase our 20-year old daughter screaming down the street two Sunday mornings in a row. He's had memory issues and at times seriously confused our oldest daughter for me. He has clinical depression, which many PD patients also encounter. Thank goodness, we're in a good period right now, but we never know how long it might last and whether the disease or the medications he takes for it will cause a problem. While our daughters have tried to have compassion and understanding for what he's going through, they're young and they're human. And, they've often found it hard to see that it's the disease, not their dad, that's responsible for all this turmoil. It's turned our lives upside down, although we continue to deal with it as best we can. Having a child under these conditions won't help you or the man you love and it will be very, very tough on the child. YOU may be able to deal with it as an adult, but a child deserves to have as much stability as a parent can provide. Unfortunately, PD can rob a family of stability on many levels. |
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Tatyana, I too don't know where to begin as I would have never ventured down this path willingly. I have two boys who are now 18 & 14. Their dad was diagnosed at the age of 40 and they were 3 & 7.........I almost fell apart right then and there when he was in the office with the neurologist and it has been a downhill slide since then. Hubbie is still fairly high functioning and continues to work three days/week but that takes everything out of him just to keep that going so I have had to look after everything else. Somedays it is more than I can manage as I too work full-time and work on the side as well just to keep up with the growing needs of our financial situation and the financial needs of the children.........sporting fees, music fees, school fees, new clothing etc. It really is tough somtimes. I have seen my boys grow up fairly well adjusted but my 18 yo went through a very difficult time between 15 & 17. He was angry all the time and began hanging out with a bad crowd and doing things not in his normal nature. It has been very difficult dealing with that knowing that my husband's illness and "not" being "there" has dramatically affected him. It really has been tough. My youngest has yet to experience some of that ..............but I am afraid it will come with the change of hormones very soon. I truly don't want to scare you away from the joy the children can bring to a relationship; however, I want you to be realistic..........It will be very very difficult. Living with parkinson's is like having another child in the house. Getting them dressed, putting on their shoes, cutting their food, not eating out because of embarrassment, loss of friends because they can't handle the changes in your spouse. Loss of a relationship because of the physical changes for the parkie including drooling, walking, unable to write, hand-eye coordination,etc. This is in now way to scare you off your decision. You came to a board that offers genuine advice and tells it like "it" is. My other concern is: my husband's father has had parkinson's, my husband has parkinson's..........what about my two boys........now that statement really scares me....... Take care and weight your decision very very carefully. Good luck to you. Decisions of this magnitude need to be considered from all angles. Noteasy2beehear |
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It seems you have two questions to answer: 1) What is best for your children 2) Is it really better to have loved and lost than never to have loved at all for yourself A child has needs. Will your partner be able to be a parent financially, physically and emotionally so that your child grows up healthy, happy, well-adjusted and loved? If your partner can't, are you willing and able to be both mother and father so that the child is healthy, happy, well-adjusted and loved? If your partner is emotionally abusive to a child it is just as bad as being physically abusive. Think what is best for the child and not yourself when thinking about having children regardless of who you are thinking about having children with. Do what is best for them regardless of what it means for you or your partner. As for him, if you love him and he makes you happy then take God's gift and take pleasure in it and enjoy today. God never promised you tomorrow. You could be killed in a car accident long before Parkinsons ever takes his life. A lot of people go through life never having fallen in love or knowing what real love is. Love is unconditional. It's not what so many people have made it which is "I will love you--but only if you.......fill in the blank". If you have that kind of love, enjoy every single minute of it. I fell in love with someone who had heart disease. We had a wonderful 6 years together before he died. We didn't get to fulfill a lot of dreams together, but I know now that I wouldn't have traded one minute we had together for anything. When I lost him my world fell apart for awhile and I knew a kind of pain that was unimaginable. Doctors can give you pills to ease your body's pain, but no doctor can give you a pill to cure a hole in your soul. Love while you can, have faith in God, pray not for what you want, but for what is best and trust that even when you do have to part that you'll be with him again one day. Good luck and happiness in whatever you decide.... |
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hi tatyana, please do notgive up on yourlove just because of pd. it helps if one has pd to have some one to take care. may be your love will be there for you when you are in problems. yrs peter |
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Tatyana, I know all too well the apprehension and trepidation of entering into a relationship with a man who has PD. My dh is 23 years my senior. We each have a child from previous marriages, and have decide to start a family of our own. We have a two year old and are trying for another. The nay'sayers and flame-throwers are limitless. You have to develop a thick skin to be in our shoes. I have to agree with pretty much everything mylove said. I couldn't have said it better myself. The best advice I can give at this point is to base your decision on what you DO know, not on what you DON'T know. What you DON'T know is regarding what lurkingforacure addressed - children. 1. Yes, your innocent children may be afflicted with PD. It is no secret that PD can be and in many cases IS, inherited. But so can a slew of other illnesses. No one wants to risk passing on such a horrible disease to their children. And it is a huge risk, no doubt. But you don't know that you will pass it on. If we based our decision to have children on what we could potentially pass on to them, no one would have kids. Alcoholism, mental illness, cancer, diabetes, alzheimers, down's syndrome - the list goes on and on. You could try to adopt, yes, but that could prove to be very challenging. There are not many agencies out there willing to give a child to a family with PD. The decision to have children with this man will be a hard one to make, but base it on what you know will happen, not what 'could' happen. 2. You will essentially have to be a single mom at some point. Because you don't know how the disease will progress, you don't know when that time will come. Hopefully, not until the children are grown, or at least up in size. But you do need to be prepared for the possibility that you will be the sole provider, financially, emotionally, physically. Having said that, again I have to say that you don't know what will happen. Your loved one may be perfectly capable of helping you with the kids. It's not an all or nothing thing either. If you are able to think outside the box and be a little creative, you should be able to work around many of the PD issues. Example - I make sure to purchase clothing and shoes my dh can put on my daughter. Elastic waists, loose tops, lots of dresses, velcro shoes. And we co-sleep, which gives him a ton of close, physical bonding time with her each day that he would otherwise not be able to do. Also, because PD affects his voice and facial expressions, singing and reading to our daughter with great expression and exaggerated emphasis is a good way to incorporate voice exercises into a normal play routine. So you see, there are many creative ways to work around these issues. 3. Yes, children need both parents. No one is going to argue that. But a disabled parent is not an absent parent. Yes, all children would prefer to have both parents healthy, and yes there are a million ways to teach compassion, empathy, kindness and understanding without imposing this situation on them. BUT, each child's reaction to PD has much more to do with their own personality than anything else. How else to you account for the parents who raise their kids to be persons of strong character, yet the child ends up in jail? Or the parents who are total losers and abuse the kids, but one grows up to be president? You can only raise your child in the best way you know how - the rest is up to them. That is true whether you have PD in the family or not. Yes, this does present a special challenge to children. I see it everyday in my own home. I am not blind to the fact that PD affects children. But the fact is, kids grow up to be angry, resentful and pissed off for a lot of other reasons besides having a father with PD. As I said, base your decision on what you DO know. You DO know that PD is a progessive, degenerative, neurological disorder. You do know the symptoms and how they can affect your loved one. Get as much information as possible. Join online support communities, as you have done here. Network, network, network - join local support groups, make friends with PD patients and their carepartners. Surround yourself with a group of individuals who truly understands your situation. These are the people you will need to be able to fall back on to help you through, whether it be emotional support for you, helping you take care of your spouse and/or the kids, or helping you get some housework done. You will find that there are many people out there willing to help if you open up and let them in. If you venture into this relationship, keep in mind that most people are not going to be supportive, at least in the beginning. You may feel very much alone at times. But if you truly love him, then go for it. We all want someone to love us, even those with PD. And loving a man with PD is no cakewalk for sure. But you need to be able to find the good in it somehow. Take what is good, hold it close and run with it. Don't let PD dictate how you live your life. Prepare for the worst but hope for the best. If you need to make financial arrangements, then do so. You may need to move to a house more handicapped accessible, or downsize to a one-story. You may need to give up the extra vehicle to pay for extra insurance. Like most of us, I am sure you are not rich, so you will need to prepare for the future. But that doesn't mean you have to live your life as if you can't make a single move because of PD. PD can rob you of so much, so live your life to the fullest while you still can. My dh worries all the time about not being able to provide me with the kind of life that he feels I deserve. I think that is inevitable of anyone with PD - most feel at some point as if they are a burden. You will need to give him a ton of encouragement and support. What you say to him matters much more than you may realize. This is where you will need to get creative and think outside the box. If he is worried about not contributing equally, especially if you have kids, then this is the time to show him how he can contribute in ways that he may be unaccustomed to, things that may be unconventional. Go out of your way to prove to him that what he is able to do is very important to you and very helpful. Most of all, tell him every single day how much you love him, and why. Good luck in all you do! My prayers are with you and yours! |
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I think the last post which said most adoption agencies would not be willing to adopt to a family where one of the parents has PD says it all-you can argue around the finer points, but that pretty much sums it up. While we may strongly disagree on things, no one should judge here, just offer advice. So I would add that if I knowingly had a child with my PD spouse after dx, I would wait for the day I would hear these words from that child: "why, mom?" I am pretty sure that I would not be able to give adequate answer to a child brought into such known situation. |
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Tatyana; My DH and I go through some degree of what you're describing too. We don't talk a lot about the 'eventualities', because we're pretty darn busy living life while it's here, but he does go through some episodes of down times (usually when he's off his antidepressants) when he has those feelings of guilt for 'bringing me into his world'. It is that those times, or when he's overdone it the day before and the fatigue hits him pretty hard that he feels 'flawed'. Yes... it's hard for both of us when he's down. But he's secure in that knowledge that I love him, no matter what. I was very nervous in the beginning for many of the reasons you said in your original post. His own feelings of inadequacy, my sketchy knowledge of the disease and how to help him, and the fact that any new relationship is hard in the beginning. What was I expected to do now? What would I be expected to do later? What would he WANT me to do, and what would he want to do himself? Some of those questions are still up in the air. We don't know yet, because we aren't there yet. But through trial and error, we've come up with something that works for us. Some of it has required some candid and uncomfortable conversation. No one likes to be reminded that someone else may have to help us perform basic bodily functions one day, particularly when we're currently looking at that partner in a romantic light. But it's a reality. And I do believe that you can love someone just as much when you need to wipe their chin (or other areas) as when they're riding around on their white horse still able to change light bulbs for you. I have seen some subtle accomodation in the year we've spent together. He was pretty much used to doing everything himself. He was just out of an abusive and unsupportive relationship, and so he had a tendency to push me away when he needed help the most. But over the course of time, when he learned to have faith that I would be there, even in the darkest times, we've found some ways that make both our lives easier without making anyone feel dependent or denigrated. I agree with Life With Shaky's letter wholeheartedly - there are many ways to think outside of the box and even make it fun. You will have to make some accomodations, but they don't have to be painful. For example, when he needs to nap, look at that as time for you to do things that you wouldn't normally have time to do. Make his down-time ME-time. If you don't have a walk in shower and have to make do with a shower-tub combo (which can be slippery), use it to your advantage. Showering together is a wonderful way to start the day, and can keep your marriage healthy as well as preventing falls. Take up a tandem exercise program. Make him your partner in health. It's good for both of you, and exercise has shown to slow the progression of degeneration. There is a great poster on this board who has a spouse with PD that tandem-bikes. Don't look at PD as a death sentence. See it as a wake up call. We should all value every day of our lives as much as if we thought it may be taken away from us sometime soon. The 'life you deserve' that he thinks he's taking away from you by being sick is a thin shell of what life is really about. Life isn't about going on vacations and accumulating things and becoming important in the community. Life is about finding that person who makes you want to wake up every morning just to marvel at the fact that you're alive and that they love you. You will have to do some 're-adjusting' of the way he views the discrepancy between you.. the age factor, the illness.. but those things are so small in the grand scheme of things. Those things do not matter. You are his partner, and that is what counts. Make those accomodations to make your lives as easy as you can where you can, and have faith. Tell him, show him, make him understand that he's everything to you and that you support and love him, just as he is. And keep in touch. We wish you the very best. |
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WOW, lots of information for you to digest. I have to weigh in on the side that says be careful. My husb has had PD for 18 years and is 16 years older than me. We had a pretty normal life for about 13 of the 18 years. For those of us that have been experiencing some of the more difficult times, it is very difficult to say go for it. We both have grown children from previous marriages. I did not completely understand what was in store for us 5 or even 3 years ago. Many people ask me why I stay and my response is always the same. I can't imagine leaving. However, we have many difficult days, weeks, etc. and I am often stressed and sad. My husb has been too. I think we both thought we could beat this disease but we both now know it's impossible. I personnally cannot imagine having a child, caring for a child, and taking care of my husband at the same time. Multi-tasking is one of my strongest skills but just thinking about a small child and my husband at the same time makes me very nervous and I'm not that old. Now, if you have loads of money...I sure anything could be accomplished. Maybe just being married, enjoying your husband and your life together are enough. |
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ATTENTION- This reply is from SHAAKY husband of Life with Shaky.... Tatanya If you would like a candid, blunt , but realistic, positive opinion ...click on Life with Shaky and respond directly to my e mail. I am sure that my comments would end up offending several who have posted but feel strongly that I can offer you some insight and help. You should also read several posts on www.lifewithshaky.blogspot.com Hope to hear from you. Shaaky PS Nice posts Mylove- you are so like my lovely wife !!! |
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Dear all, Happy New Year! Let 2009 bring you all more happiness and love. Thank you for all of your opinions- there is nothing more important than to listen to people who have been there and can tell you what you have to worry about. I can not tell you how much it means to me that you all took the time to write in response to my post... to share all the hardships and joys that you have encountered. It made me think even more critically whether I was about to embark on the right road for me. It was a tough time of soul searching and although I am choosing the road some of you are so strongly advising me against, it is through your advice that I am going to be able to plan ahead in a way that will hopefully make the hard times a little easier. I suspect this gives away the fact that I have decided to go forward. I know this will not be the easiest road, but I have never imagined loving anybody this way, and I simply do not want to walk away from it. As Life With Shaky suggested, I will plan for the worst and hope for the best- hope that we will have enough good years to get us through the bad. This was the easier half of the decision. But I think I will go ahead with trying to have kids as well. To those of you who feel this would be cruel because the kids could have PD as well... I know quite a bit about the biology of PD (I am, actually, a biologist). I doubt that my loved one's case is genetically linked, but I will probably do the DNA test for all of the known PD-associated mutations at amniocentesis. And as for the difficulty of raising kids when your partner can't contribute equally- thank you for both warnings and encouragments. I have a pretty good support system that I think will help me compensate for some of the difficulties and I will also make sure to do careful financial planning to be able to afford help when things get really rough. I hope that you will all know that each and every comment you made made a huge difference for me and will keep me on my toes and pragmatic/organized going forward. I know you all spoke from the heart and I took all advice very seriously. I hope that the fact that having looked at all of your opinions through the prism of the particulars of my own situation I am choosing to go forward will not be construed as disrespect or dismissal of your experiences and opinions. Having embarked on this road, I will need you all over and over again. I hope that I will still be welcome at this wonderful forum. tatyana |
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You will always be welcome on this forum. The key to our success on this board is the belief that everyone can express feelings and no judgements are made. The divergence of opinions on you situation demonstrates this fact. I believe all of us will be very honest with you but we all have experienced different situations. Only you can decide what is best for you. I wish you the very best and pray that you have very few problems. We are always here for you. Happy New Year! |
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sorry, apparently this topic is over but I just have to say....I know this is a *caregiver* forum but how come we never see posts from conflicted PD patients saying "hi i'm thinking about marrying this wonderful girl/guy but I'm afraid of ruining his/her life." ????? With all due respect to bandido, lohengr1n and all the other PWPs here (who I cherish and believe deserve all the happiness the world has to offer), I'm a little dumbfounded by these posts. I wish these potential spouses we hear about would read the forum. I've been caring for my dad for over 4 years. I'm so glad he divorced my mom because if he hadn't she'd be dead from caring for him by now (and even if she had somehow miraculously survived with her heart condition, she'd have no money left to live on). At least I will have one parent left when this is all over. I truly believe it is a privilege to care for others and that there is meaning in suffering and sacrifice. And yet, if I were in love and knew I had PD, the most loving thing I could do would be to NOT marry that person. And children??? I would never bring them into this environment. Do you think, especially considering the possible genetic factors of PD, that I have not thought about this quite a bit? I would never knowingly put someone I love through what I am going through now. They would never even get to the point of posting on this forum to ask "what do you advise?" Say what you will, young lovers...it just tells me that even with all your "research" you have no idea what lies ahead. |
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I wanted to add something to this thread but since it had fallen into the background I was just going to let it lie. People will do what they are going to do, at the end of the day...especially when emotions are involved. But now that the post has been resurrected today, I would add the following. Marrying someone with PD involves two people, both adults who know, relatively, what they are getting into. Your fellow is 11 years into this journey, I think you said, and from all accounts I have read, the really rough stuff is looming in the very near and immediate future. You can do the research and decide for yourself whether you are up for that. But to voluntarily bring a child into such a situation is another matter entirely. In addition to what I and others have already posted about the effects on the child, you need to seriously consider what in the world you would do if, heaven forbid, something happened to you. I hate to be morbid, but what if you died in a car crash, from cancer, or worse, did not die but were handicapped yourself? Your PD spouse would NOT be able to take over, and your child/children would be up a creek. You could find yourself with social services coming to take them if you and your husband could not adequately care for them. I have had to consider this myself and it kills me to think that if something happened to me, my kids would have to go live with relatives or, if those relatives decided they could not take that on or got tired of it, someone the court appointed as foster parents. The thought is unbearable, we all know NO ONE loves our children as we do and my kids would be so lost. As remote as this may seem, you must consider the possibility. We caregivers all want to think we will outlive our beloved PDer but the reality, as annwood has researched, is that 40% of caregivers die before the person they are caring for passes on. I hope I got that stat right, correct me if I am wrong. The point is, have you even thought about what would happen to your child if you died or became disabled when he was 2, 8, or 15? Who would care for him or her? For how long, and would he/she be happy in that environment? Where would he/she live, and how? If you already have a child/children, you will know the total torment this situation would cause everyone involved. If you don't, talk to a mother. Please think very carefully of all the possibilities before unilaterally bringing an innocent into such a difficult situation. |
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Hi, Pick & Lurkingforce As you have probably read I could not agree with you more but as you said we are dealing with emotions. I can't understand why a PD person who is 11 yrs out would even consider putting that burden on a wife but then we three have been there. As much as I loved my husband there is no way in hell I would volunteer to go through that again. This is not some romantic movie where the loved one dies peacefully in your arms. You are correct - my statictics from the National Family Caregivers Assoc show that 40% of caregivers die of stress related diseases before the patient. Mortality is 60% higher in spousal caregivers than in non caregivers. Since the symposium is dragging their feet in getting all of the talks online I would be happy to email a copy of my talk to anyone interested. You that contributed made it possible. The address is: www.annwoodln@aol.com. |
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I just have to ask: If your lives are so bad, if it really is so difficult and you would do it all differently if given the chance, then WHY are you still married to a PWP?? If you are so against it, why are you still in the caregiver position? Is it because you feel trapped financially? Do you feel obligated to stay? Or could it be, dare I say, love? If you are, in fact, choosing to stay in a relationship where you are the caregiver because you love that person, then you are really no different than those of us choosing to love a man with PD. I don't normally speak for others, but due to the nature of these posts, I do feel the need to at least defend Mylove and Tatyana alongside myself. I hope that's okay. I think the fundamental difference between all of you and us is that you all were apparently blindsided by a PD diagnosis. My take on it is that this came to you completely unexpected and you were devastated by it, and have spent the years since holding your breath, waiting for the shoe to drop, mourning the loss of the spouse you once knew. We, on the other hand, have been fortunate enough to know ahead of time what to expect. We are not love sick teenagers. We are educated, intelligent grown women, perfectly capable of doing the research and looking at ALL sides of the spectrum. Because we know what to expect in advance, we are able to properly prepare for what is to come. We have time to make financial arrangements, get as many resources into place as we can, surround ourselves with people we know will help us and support us, put into place people we know and trust to take care of our children should something happen. From what I gather, most of you were unable to do all of that, so it stands to reason that you would be in such a difficult position now. I have to specifically comment about Pick's remark regarding potential husbands with PD. My dh does read this forum, regularly. It was not so long ago that he himself was a potential PD husband. Perhaps you should be reminded that as difficult as it is for those of us that are caregivers, it is far, far more difficult to actually have PD. I PROMISE you this - it is far more difficult for a man with PD to enter a relationship than it is for the woman on the other side. And by the way, they have enough guilt to deal with on their own without coming to this board to be flamed for "ruining our lives." I have not read the statistics from the NFCA, but I have to wonder exactly how accurate that is. Was this exclusive to caregivers of PD, or does it encompass all caregivers? You said yourself that these individuals die of stress related diseases. Again, in our situation, knowing ahead of time and being able to prepare for such stresses, we have a much higher probability of survival than the rest of you do. Sorry to be so blunt about that. This is supposed to be support group. Telling someone who is here for support that they have a 40% chance of death simply by way of a relationship is cruel. It is nothing more than a scare tactic, and it has no place on this board. You might at well tell her not to marry at all, becaue the divorce rate in this country is 50%. Why don't you flame her (us) for that, and all the horrible things we call put our kids through by risking divorce? It would have been just as effective but much nicer. At least then she would have a chance to be alive. If you really care about supporting Tatyana, or the rest of us for that matter, why don't you gather together some useful resources and actually offer meaningful support, something she can actually use? It is very disappointing to me that a support group would resort to such low standards of "caring." |
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Well, thank you for sharing your thoughts. I personally believe that is what this forum has been about....sharing information. This is a very informative, supportive, and as positive forum as it can be. I thank everyone who participates and shares including shakey.(the good & the bad) However, with all due respect, I detect a bit of anger. Again, that is what this forum is about. Getting the anger out. Everyone has a choice to join this forum or not to. Anyone can read and not participate. If it doesn't work for anyone one person, that's ok. I'm sure there are other outlets available in the local community that might better suit specific needs. Everyone has the right to gather as much information as they need and then make their own decision. Hopefully, that is what everyone is doing here. Just my opinion |
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I am so sorry that we seemed to have caused such an uproar. You are right in saying that the decision is each individual's but if you come to the board asking for information I believe that those of us who have experienced what you haven't are only going to attempt to tell you the truth. It is the old "Don't ask a question if you don't want to know the answer". I don't care how educated and informed you are or how many resources you might line up in advance you will NEVER be prepared for what may occur. It is one thing to read about it and another to live with it 24 hrs a day. I can't speak for the others, but I think I am right, when I say that I loved my husband very much. I actually "lost" my husband 2 yrs before he died. I took care of someone that in no way resembled my husband and it was terrible. I often thought of leaving but knew that I could not live with myself if I did. The thought that I COULD leave often kept me going. I did not need my husband financially - in fact, I sold my company to care for him. I don't think anyone would elect to stay because of finances. I personally would have lived in a cardboard box under the bridge to get away from it. I also lived with the knowledge that my husband would never have done the same thing for me had the tables been turned. As a rule men just aren't wired for that. I took my wedding vows very seriously and "for better or for worse, in sickness and in health" took on a new meaning. We all have our own experiences and in sharing on this forum we merely hope to help. I don't think any of us mean to be judgemental. |
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Wow, those are tough words. This lady asked for input, and we gave what we know. We cannot help it if there are those who do not like the answers being given. I felt very defensive reading your post. This is a fabulous forum and even though someone may disagree with me I know the reason we are all here is because we care, want to help as we can, and may/will need to dip into the well of help ourselves at times. Why someone stays with someone with PD is very personal but should be obvious: love. I dearly love my husband. We also have kids, and I could never bail on him when the going got tough- what kind of message would that send to them? I guess there are those that stay for money but I made good money, all on my own, before I had kids and plan to do so again when they are old enough to head off to school. If someone wants to marry a PWP, that is fine, their business, and they are adults and responsible for themselves. My point is that a child is entirely another matter. ALL of the possibilities for ensuring that child's needs will be met should be considered, however grim or remote. I am sorry if mentioning these things offended anyone, but PD is what it is. It wrecks the lives of everyone it touches, and to sugar-coat that and make it sound otherwise does no one any good. Are there ANY books out there proclaiming how fun, lucky, wonderful someone felt to have PD in their life? Let me know if anyone finds any. We are all very open and honest here but I have to say that posts like this last one are not beneficial to the forum. We should be able to disagree without attacking each other. |
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| Very well said, Lurkingforce. |
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I agree, we should. But which bit first? The initial discussion ended on a 'live and let live' note. Why resurrect it only to be hurtful? I've read all the posts about caregivers who have family members and friends who come in without knowing what the situation is and pass some bitter judgment on how the caregiver is handling their life and their situation with their PWP. I've seen how much pain that you all feel when that happens. After all, you're making the best decisions you can with the particular circumstances of your life, aren't you? When you asked for help, all you were asking for was help. How dare they come in and sit as judge and jury of the choices you're making! You say you feel lonely and isolated, because you can't talk to anyone about the life you're living and any challenges you may be having, because if you do, people chastise you. You feel angry at the people who bite you, when all you asked for was a hand. I've seen this whole board reach out their hands and offer support to those people who are being excoriated by the people that surround them. I've felt proud to be here when that happens... proud that the community can become a support system that helps out when someone is in need. So.... why is this situation any different? Twice within a year you've had a member who came to this board and asked for information. I agree that the reality can be not pretty. But there's been some personal condemnations made that weren't purely informational, but more of an attack on personal choices. Everyone has their own opinion and we are all entitled to one, but it would serve the community better if, rather than evict people who aren't members of the 'club', we could offer that same kind of support to everyone, regardless of their choices. To some of those who have made cruel remarks: aren't you ashamed to have the members of this board who ARE PWP's believe that we think they have less value to society than healthy people? My husband is not 'damaged goods', before OR after his diagnosis. It would be a grievous shame upon me if he ever believed that I considered him so. (By the bye... I would have let him give you his perspective on the issue, but I was ashamed to let him read some of the posts) I'm very disappointed that such a legitimate question has descended to this judgmental level. The only 'sugar-coating' I've seen here has been in defense of the offensive comments. That's not helping anyone. If this board is to be therapy and information for all, it needs to work for all. |
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| No one is judging. This lady asked for our input on a very very serious issue. The concern here is for the child she says she is thinking of having, who, unlike the adults who can "live and let live", has no say whatsoever in the matter and worse, may inherit PD him or herself. |
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I think that we have reached a stalemate on this topic. This forum is for everyone and if you don't like the comments you don't have to participate. I don't believe any of us are bitter, disgruntled, judgemental people but we have experienced things that are yet to come for some of you. That is where the information comes in and I too am sorry if it is not what you are wanting to hear. I don't think you are going to find an honest post that tells you life with PD will be wonderful, it will not interfer with your happiness, there will be no financial burdens and bringing children into the situation is a fantastic idea. My point has been that many of us have experienced the pain and hardship of PD and yes we may have been blindsided by the diagnosis but we continue to take care of our loved ones. You, on the otherhand, have the opportunity to choose that life. Given all of the information the decision is your. Mylove, I well remember this discussion with you a year ago and I am glad that you are happy right now. The discussions were very much the same at that time as I recall. You made your decision after taking into account our comments and I applaud you for that. You have made some great contributions to our forum and I hope that you will stay with us. You can be the person who changes our minds and I hope that the future allows you to do that. I am sorry if our comments offend any PD pts but I feel certain that we are not telling them anything they haven't thought of themselves. This is an informational forum and we are trying to honest and forthright. |
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| Yes annwood, thank you. |
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If I seem angry, it's because the nature of this particular thread. The overwhelming majority of the posts here have been negative, hurtful and judgemental. I was not the original poster asking the question, but because I have been in that position I felt justified offering my two cents. I am a member of several in-person support groups, both young-onset and "typical" onset. I head the local PD Fundraising Committee and have served as vice president of our local chapter APDA. I have a family member and several close friends in the very late stages of PD. I have lived PD morning, noon and night for almost 10 years. My own spouse may not be as far along as some of you, and true, I will never really know what it's like until I am there, but I think I have enough personal experience to give a thorough, well-informed reply to the first question posted by Tatyana. It is one thing to give a clear, precise description of what life as a caretaker is all about. It is another thing entirely to post horror story after horror story and place judgement against one's personal choices. For instance, what if a PWP actually did come onto this board and tell you that he wanted to start a relationship? Would you flame him and accuse him of ruining his loved one's life, as Pick mentioned? Those are the types of negative responses/questions/information that are better left unsaid. There is no value to that at all. Thank you, Pick, for pointing out that my husband, along with Mylove's husband and Tatyana's soon-to-husband, is ruining my life. That is a very incorrect assumption on your part, and way out of line. Lurkingforacure - you made my point for me. You stay out of love. So are you saying that even though YOU have stayed out of love, we should not, just because we are not as far along in our relationship as you? Are you telling us to get out now, while we still can, because our marriages are not as valuable as yours? Are our loved one's not as worthy of our love because they had PD in the beginning rather than several years in? Did you ever stop to think that perhaps WE would like to have several years with our husbands before things get bad? As for having children - I stand by my original comments on that. There are many, many diseases that are genetic. No one wants to willingly risk passing something on to their child. I won't argue that. But if it's not PD, it will be something else. I guess both parents could be tested and then choose not to have kids if they come up positive for any genetic illnesses, PD or otherwise. I would be very interested to know how many people are this board have done that. If you're looking for something happy, positive, and "I feel lucky" about PD, my blog address is www.lifewithshaky.blogspot.com. Feel free to visit anytime. The bottom line is that this thread crossed the line from being helpful and supportive to judgmental and harsh, which very personally offends me. |
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| Once again I don't believe any one of us mean't to be judgemental. You are the one that seems to have the attitude right now. I am sorry for your anger and would ask you to look closely at it's roots. We can rationolize anything. I do believe the major issue is whether or not to bring children into this world with the odds stacked against them, not whether or not we would leave our husbands or why we chose to stay. |
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Yes, that is the issue, children. I never said don't fall in love with a PDer, don't get married, dump one if you have him already...I obviously love mine madly or I wouldn't even be here. But kids? I certainly didn't mean to offend, judge, ridicule, or however you want to characterize my comments, and I am sorry if they were taken that way. I hope that everyone here is happy and at peace with the decisions they have made in life, as well as those that were made for them by this damn disease. |
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FROM SHAAKY - PD PATIENT , HUSBAND AND FATHER For the life of me, I don't understand why this thread got started again after the first round. Was someone bored ? Yes, you can rationalize anything including your harsh, judgemental, self centered, negative comments. You can even assume that since I am in the earlier stages of PD that we just don't know what lies ahead... My oldest brother is in the end stages of PD+MSA and like one of you noted, my sister in law is caring for someone who in no way resembles the man she married. Yes, it is Ugly with a capital U, Yes, sometimes she is wishing to go live in a box under a bridge. But she swears she would not change anything if able to go back and choose again knowing there would be PD. So, we DO know whats coming. Statistics.....PD isn't even in the top 10 inherited genetic diseases.... Perfectly healthy folks die in car crashes every day and leave kids behind, young parents, young kids...the tragedy as I see it is simple. When you are born, you are born with a terminal disease, it's called LIFE. How come most of us ignore that until we are old, sick or faced with a horrible disease ? Read Mitch Albom - "Tuesdays with Morrie" - you can only start really living after you accept that you are going to die - someday - like the country song " live like you were dying" Being a PWP and reading some of these comments makes me sorry for people in your care. Is that blunt enough ? I am not angry at all. I choose each day to take that one day and live it , love it and not sweat the small stuff. I don't get angry much anymore , too busy cramming all the life in while I can. Stalemate ? No, I would say that this thread has sunken as low as it can get. Since we are sharing opinions and feelings I assume it's OK for me to post this as it is informational and is only my own personal perspective. Right ? Hopefully there is a moderator somewhere who put this one on ice .... SHAAKY |
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| Shaakey: Easy buddy! We should chat when we meet on the other side. Bob C |
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SHAAKY, You posted "When you are born, you are born with a terminal disease, it's called LIFE. How come most of us ignore that until we are old, sick or faced with a horrible disease ? Read Mitch Albom - "Tuesdays with Morrie" - you can only start really living after you accept that you are going to die - someday - like the country song " live like you were dying" Isn't it amazing? How it takes a disease like this (or one of the many other incurable one's) to put things into perspective? "Don't sweat the small stuff" is so right! I find myself shaking my head in bewilderment so many times and at so many things. Guess we're kindred spirits. As I always like to say "There's two kinds of people in the world, the terminally ill and the terminally well. Only difference is the latter don't realize it yet." Take care, best of luck and hang in there. |
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"flame"...what are you, 12?? Wow..YOU'RE offended? I'M offended...that's why I posted. We were asked a question and we answered as honestly as possible....and told our answers have "no value." The "yes but" responses ....in this thread and the last one....were filled with sanctimonious platitudes as if we who did not "choose" this life are somehow unable to comprehend concepts such as love, duty, honor and commitment. I feel like WE are the ones being judged, not you. I suggest to you we may understand those concepts better than you can imagine right now. Raising the specter of Mitch Albom, whose cringeworthy 'biography' is more a tribute to himself than to Morrie, speaks volumes. I was not blindsided, in the way that you assume, by PD, and I AM quite educated, tyvm. When my dad was diagnosed (only 8 years ago) he was asymptomatic and I was working on a PhD in biology at Cornell....what makes you think we did not do EVERYTHING we could to "prepare"? But as Annwood (a registered nurse, no less, but I guess she is not educated or "capable of doing research" either) said, you will never be prepared. How am I to "gather together some useful resources and actually offer meaningful support"? My dad spends well over $100,000 a year on caregiver services alone and will be broke in two years. I've never even MADE $100,000 a year, have you? I could quit work and school and stay home all day to care for him in which case it would only cost only $40,000 a year if I wanted to sleep at night (and for several years I did do it all on my own, averaging around 3-4 hours sleep/night). Perhaps you are quite wealthy but personally I don't know anyone who could afford to raise children given that financial burden. If I were to suggest that someone living below the poverty line should reconsider bringing children into the world, would you still chastise me for making them feel like they "have less value to society"? Sorry if this falls into the category of "horror story after horror story"....and isn't as helpful as the wonderfully useful advice about clothing with elastic waist bands and velcro. Everyone is free to love and marry whomever they want, but please let's be intellectually honest. Those who "marry in" to this lifestyle are not better prepared, more educated, more "positive" or loving or blah blah blah. They are not better caregivers (how dare you, sir... Ugh...just ugh....and now you want the moderators to close this thread b/c you don't like it? exactly who the hell do you think you are?). They are choosing this life simply because that is what they choose. Sorry if my answers are not as eloquent...I don't have time to hone my writing skills on a blog. You don't like the answer? You think I sound harsh, bitter, angry, resentful, etc? Welcome to your future. You're offended? Since you're so into preparing I suggest you prepare a thicker skin. If my posts so offend your delicate sensibilites you are in deep shiite. You wouldn't last a day in my world, and not a minute....not even a second... in my dad's. Is THAT blunt enough for YOU? I'm sorry if my posts over the years, which I had hoped were helpful suggestions ranging from everything from advanced directives to liquid poo, were not "useful". Making this journey a little easier for others is something that gives all this suffering some meaning and makes it a little bit more bearable for me. Rest assured I will no longer waste my time or yours. |