For those who care for someone with Parkinson's disease
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Hi All! Does anyone experience their PDer to be two or more different people and the change happening from one personality to another overnight? Example: My PDbfriend is a sweet, kind and understanding guy for a couple of days. It seems that he makes sense and his mind works well. Then suddenly the next day he seems to be in another world, acts as if it is doomsday, says he can't continue with the relationship without providing any reasons that make sense. If I didn't know that something is wrong with him, I'd think he's a jerk who plays mind games... What is this? I have to walk away when he is in that dark mode because he tends to pull me down with him. He just looks on the floor, avoids eye contact and says mean things and at the same time admits he doesn't treat me well. He wants me to be in his life but takes me for granted. When I tell him that I can't do this, he tells me there is no future for us and then he acts like a helpless child, making me feel like a jerk if I walked away. Maybe he is playing games...or is it really that bad that he has some type of PD induced multiple personality disorder? Maybe I should leave. I don't know anymore. |
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| loola, You seem to be trying to rationalize things in an irrational situation. You've posted about your BF going to try to be in a new study then not being in it because of cognitive decline. The rules have all changed. This is again a baffling disease and reading mind games or malingering and "acting" child like into what's taking place doesn't work, unfortunately it probably isn't acting or playing games. As for multiple personality's I haven't heard of this in Parkinson's Disease. However what might be happening is that some of the "filters" in our brain might be breaking down. You know how a "normal" person might be feeling down or blue? They can remind themselves it will get better or it's just a phase I'm going through? With Parkinson's We know it won't get better, barring any medical breakthrough our brains continue lose those cell making dopamine, they are dying continuously. We need to try to perk ourselves up all the time and at times we can't and get gloomy. Stepping back and looking at this from a distance it is more understandable but up close trying to make sense of it from a normal person's view it is hard. In the midst of this disease many interpersonal relationship tools or skills we've developed over our life time won't work. It's a mess! It is constantly changing and needs continued revamping our understanding of the situation. That's where the forum helps we can compare notes and get different views of problems. We find ways others deal with things and try to fit solutions into workable ways for Us. You ask interesting questions, keep them coming we all pause, think and learn with them. Until the medico's invent the Lazarus pill to resurrect our dead and dying brain cells it's about the best we can do. Take care, best of luck and hang in there! |
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Hi, Loola - You ask a good question, but I must say that you must brace yourself for PD if you plan to stay with your bf. You have to constantly monitor the pills, because there will come a time when your BF cannot. You will have to wipe his chin when he drools, help bathe him and help him go to the toilet. You may have to hook up external catheters at night for him, and wake up 5-6 times a night just to help him turn, repair a catheter that mysteriously "just came off" when the Depends that were over the catheter lie at the bottom of the bed. You have to love your BF very much and consider all these things. Do you enjoy his company, love him, truly care for the best possible life for him (and maybe giving up the best possible life for yourself - or maybe not, on second thought) and wish to stay by his side throughout all this? You need to ask yourself these questions. We all have - even those of us that are married to the PDer. No one is here to judge the decision you make when you ask yourself these questions, but they need to be asked. Better sooner than later. |
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We have been together for about four years. He was already diagnosed when we met. I did not know much about PD at that time. I used to travel for months at the time and noticed changes every time I came back. It seems more obvious when you don't see the person every day. We have talked about health care proxy, power of attorney, some kind of life estate so that his family couldn't kick me out when he gets worse. I offered my sincere help should he get worse. His family won't help him to live at home. They will just find a nursing home for him and never visit. He hired lawyers and let me do all the paperwork. I spent so much time on research and putting it all together the best I could. It now happened for the second time that he copped out. He is scared to share anything. He has no one but me close and caring at this time but treats me as if he is entitled to all my time and care without securing our future in view of his illness. He has two houses and will probably loose everything because he has no long term care insurance. He likes to stick and keep his head in the sand. He really believes that he's going to go out there and build a successful company with employees. There are days when he can't even leave the house and his attention span is minimal and diminishing. Bottom line, he's in denial and undermines any of my attempts to plan for the future. I feel like I'm on the Titanic. I have been willing to keep the ship above water but with his sabotage, there is no chance. His sister is far away and only calls when she needs money. Like I mentioned before, once he can't live independently any more and without someone like me around, the family will just sell his property, put him in some far away nursing home and leave. Maybe it's better if I don't take on this responsibility of caring for him because he has enough cognitive function left to understand that I am helping him but does not support me. People are telling him how he looks better and happier since I'm around, but he just doesn't care about making things easier and in some way taking care of me too so that I can help him. I have always been someone who helps but maybe it's not my job to help him and as it has been suggested it is time for me to reflect on my future and to make a decision. Otherwise he just drags me along downward with his aversion to responsibility and denial of how bad things are and are going to be when he keeps ignoring them. His mental problems are not bad enough yet to justify his selfishness. He seems to be a stubborn narcissist thinking he is entitled to my time and care. It would be easier if he was appreciative. It doesn't matter to him if he imposes on my time and then just throws all my work in the garbage without any explanation. He admits that he's not being fair to me but then it turns out to be superficial talk. He actually doesn't feel in his heart what he says. Here is another question I have. Are your PD husbands/wives appreciative of all that you are doing for them? Sure, I assume most of you do what you do out of love, care and compassion, but everyone needs some positive feedback for what they do in order to stay emotionally and psychologically healthy and strong... |
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You have made some very heartfelt comments, Loola, and I can tell you have done some very serious thinking lately. You are in a bad position, because you have no legal status and your BF's family is likely to go against what you would like for him, and maybe what he would prefer for himself. There are alternatives to nursing homes. For my dad, we have done well so far with having him stay in his home with a live-in health aide. I go over several times a week and do the grocery shopping, get his prescriptions, take him to the doctor, and pay his bills. As well as just sit and talk with him. But this is not cheap and it's not covered by Medicare or insurance. (Cheaper than a nursing home, though, and you can't beat having 1 on 1 attention.) It's also possible to get an aide to come in on an hourly basis. Honestly, it only gets harder from here. MUCH harder. You will probably not get much appreciation from him for what you do. It's part of the disease. If you're not sure about whether you want to do this, it might be better not to commit to it. Sue |
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loola, there are folks in similar situations who have come here asking for similar advice. You may want to search past posts and see some of the candid responses given. It is not pretty, dealing with this disease, whether you are in a legal relationship with the person or not. I would think not being in a legal relationship, which does afford some protections at least financially, would be disastrous in your situation. As soon as things get tougher, which they will, you say the family will get rid of you. You have no legal protections right now which would allow you to stay in this man's home or share in his estate. You say they will put him in a home, which dispenses with your caretaking of him, and this will drain his finances until there is nothing left. Do you plan to go see this man daily for the rest of his life if he were in a nursing home? If not, that should tell you something. Even if he stays in his home for many more years, those years will get progressively harder. Can you lift him, turn him over, get him on and off a toilet, in and out of a bath or shower (all the while not getting to shower yourself) all those things that are physically difficult even for a big strong man? I could not possibly lift my husband much less help much in turning him over in bed. I know that when that stage comes, I will have to have help and it will be very expensive. As for "appreciation", it does not sound like you are getting much now and that will only get worse as well. Imagine how you will feel, waking up 5 and 6 times a night to help him, only to have him bark and snap at you in your sleep-deprived state. This is the disease, of course, but can you handle that, day after day after day, knowing it will not change? Can you handle doing every single thing to run the household, from grocery shopping to cooking and cleaning and doing the laundry and scheduling any repairs, and on and on and on? Not many people are up to such a thankless task, which is why the divorce rate among PWP is so high. Finally, you do need to think of yourself here. I don't know how old you are, but caregiving is a full-time job and you cannot imagine all the sacrifices caregivers make. If you are younger, it could be very hard staying as caregiver to a man who will not commit to you, because when he is gone, it may well be too late for you to do things you postponed to care for him. The level of resentment could be very high. There are no "do overs" in life, no dress rehearsals. |
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| I am so grateful for all of your sincere advice! I'm still young and it is true that since I have been with him, who is 28 years older, my career and painting has suffered. At first he offered me his house to create a gallery for my work but due to the increasing problems and my lack of legal status with him and in his house, nothing moves forward. I see this is a crossroad in my life. Thank you for being so supportive and honest with me. |
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Loola, I have one last piece of perspective, and something to think about. If you go back a few years through the archives, you will see my posts from where I came to the site asking some of the same types of questions - should I get involved? What can I expect? Many of you might think I'm poking into this thread to 'play Pollyanna', as I have been suggested to have done. This time, you may be surprised. I think that there are a great deal of parallels between your situation and mine (and that of a few other couples that have previously posted on this board). We have spent a lot of time here saying that PD should not be an 'automatic out' for a relationship. I know it's a controversial concept, but I still do not believe that the prospect of a difficult time down the road means that someone should throw away the chance at a significant, mutually enjoyable relationship. The reality is that we all get sick, and most of the time, one of a couple will end up in the caregiver role for whatever disease or old age comes along to steal our abilities. My husband is 13 years older than I, and he's had Young Onset Parkinson's for approximately that long. We know of the road that's coming ahead, and I went in with my eyes fully open. He is a strong, quiet, loving man with a large extended family that have accepted and cared for my children and I as one of their own. He has been the gift that I waited for all my life, and yes - PD is a drag, but to me, the trade-off was worth it. However, your situation has many more red flags than I would have felt comfortable with. You do not have his family's support. You don't sound like you have a really secure footing to operate from, and you're being asked to give more than you feel comfortable giving. You are still fairly early in the relationship, and you are having serious doubts in your heart about staying. Those are red flags. Also, you say that you feel (and the doctors suspect) that he has mental health issues above and beyond PD. There is a tendency to take every symptom and ascribe it to PD once you have a diagnosis. It's a handy umbrella to lay everything under. You can search for ways to explain things by saying 'it's just the PD'. What you are really looking for is a way to say 'it isn't his fault - it's just the disease. It isn't really him.' That may be true. But then again, it may not. Chronic disease has a way of enhancing the most negative aspects of our personalities. In a way, it's a lot like alcohol. If you've ever noticed, many times the person who is self-secure and happy in their lives becomes the 'happy drunk' when they drink. In contrast, the person who is angry and critical becomes even more so when they have a cocktail or two. These things that you are seeing in him that are present now are not likely to go away as things get worse and his mental state deteriorates. If he has an underlying mental health issues, you are dealing with two separate conditions - that *and* PD. In the long run, you have to do some serious soul searching. You have good info here. You can learn more. If you choose to stay, have faith in yourself. You CAN do it. Many have. It's hard but not impossible. If you stay, though, stay because you've made the decision that you love that man so much that nothing could happen that would make you change your mind. Stay because you believe that one, two, five, however many good years you get are enough. That's the foundation you'll need to get you through the upcoming years. BUT - Don't stay because you feel a sense of duty, or you will spend those years feeling angry and bitter and regretting the choice you made. And both you, and he, will suffer for it. If you choose to leave, be kind. Do it now, before he comes to depend on you even more. Be good to yourself, and acknowledge that you made the best choice you possibly could with the tools you have to work with. Love yourself, and say that you did what you could for him when you could, and let someone else do for him what you cannot. Take your true self into the future... take back up your painting, and be grateful that you have your fingers, your balance, your senses, and your freedom to be who you are. It is what we are made for, free will. Take your experience of your time with him and see it for what it is - a precious memory of loving someone who may not have been able to be very lovable some of the time, and a reminder to live every single day to the best of your ability. If you go, that will be your legacy to him. A life well lived, with gratitude. You may think I'm goofy, but for what its worth, I'm an artist too. I've done much of the same soul-searching on your road. Good luck, fellow traveler. Keep us posted. |
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mylove - I don't think you're goofy at all  at least not in your response. Everything you wrote makes a lot of sense and is profoundly spiritual! I can see that you did deep soul searching yourself.The more I look at my situation, the less hope I have for it to work out for all the red flags as you mentioned. When his dementia gets worse and it seems to be happening fast, he won't even recognize me. Then I could say we had a couple of fairly good but problematic years and then who knows how many years with nothing but care taking for someone who was never concerned about the impact his disease would have on my life and with whom I don't have any significant history. Caretaking itself is hard, considering the negativity and attitude his family already expressed towards me and possible resulting wars with them about what is best for him or rather for them, scare me. I am a peaceful warrior trying to make the world a more beautiful place by being a light to others and with my art. This man and his family could take away from my life's purpose. If he had been loving to me and set up something to provide for me so that I can provide for him, it would be different, but he turned out to be a taker concerned with accumulating and protecting his assets, scared that he may have to share rather than care for his health and the well being of his caregiver. He has always been proud of getting cheap deals and sometimes I feel that he treats my caregiving as a freebie and doesn't like the idea that I deserve something like security in return. The disease doesn't ask him permission to give. It takes whether he's agreeable or not and he will probably loose his assets to long term care payments to nursing homes...how ironic...when he had a caring friend who would help him to stay at home and live independently as possible at his fingertips, but his greed and denial are greater than any appreciation for me and my situation with him. It's not easy to make the move and to leave because I have feelings and my life invested in that relationship right now. I didn't plan on breaking up and thought this was for the long run. I agree that it is better for him to do it sooner than later. Still, I don't see how there will be anyone replacing me. His family definitely won't. I have had visions of him ending up in hospitals with no one there to pick him up and help him. The PDers who have you (people on the forum) are lucky. Most of them can stay at home semi incapacitated for many years. What about people with PD who don't have any one to take care of them...especially when cognitive and executive function is compromised. They can't even arrange for an aid themselves. I remember talks with my BF when he told me that he wants to stay at home at all costs even if he just stayed at his workshop all day long. Then again, maybe the nursing homes aren't that bad, but people with PD and dementia need special care I heard and that is probably also very expensive. Then again, why should I worry about that. He/his family has to pay for it. All they gotta do is sell his real estate. He thinks it won't happen that way...and that he will get the miracle cure before that happens. |
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Loola... my situation is one where my guy and i aren't married, the big difference is that we were together before the diagnosis, but only a few short years. I guess i could have walked away, but I choose not to. I also did not have the "mental" issues you are dealing with. As mylove said, you can not attribute every little problem to the disease, there are other physiological and psychological things that are going in a human body to just chalk everything up to the PD. Yes, we ask ourselves everyday, is it the drugs? is it the disease? or is it something else. Like mylove, some may think i'll say stay, but, if you have no support form anyone other than yourself, if his family is not willing to let you "take over" than it is quite possible that you will only "harm" yourself by staying. like so many others say, caregiving is hard, I quit working to take care of my guy, we are far away from my children and his family, well, they just don't care, so the only support I have are a few good friends, this website and friends i have met through this website who have the same view as my guy and myself. We have all the legalities in order with me having Power of attorney, the will, living will is all done, the attorney is well aware of my guy's desire to have me be conservator, guardian, whatever it's called,for when the time he becomes incompetent to make decisions on his own. WE've only been in this disease 3 years, but, he has progressed more even in the last year and I think it probably is harder on him than me, knowing I could really walk away anytime. Not that I would, he knows how i feel and I have no intentions of leaving...but you have to know...this is a hard road and the soul searching you've done and the comments you have posted.. my personal advice is leave now before it gets too wild. Again, like mylove, do it with love and firmness, let him have some dignity and respect, even though he might not deserve it, for it may be another illness driving him to do what he does..... I have a son who is manic depressive with violent tendencies and your description of your BF sure sounds similar to my son..... Good luck.. all of us here know how tough of a decision this is and i hope you do well by yourself..... |
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Thanks karolinakitty, I've been reading older posts about leaving or staying. Many have said they would have never gone into it knowing what awaited them. Going out or away from it isn't easy though either. I'm facing the unknown...I don't even know where to go. I was working on building my gallery. The space is huge and my large paintings can be displayed well. Sure, I'm not where I am for my paintings but this was all part of my life with him. If I go I have to start over from a new beginning, maybe another town or country. Leaving into the unknown is often harder than staying within the known no matter how difficult the known is, at least you know what you're dealing with...I feel like I believed in something that turned out as a failure, I didn't even have one art opening here  Too much stress with the PD situation. Then again this wouldn't be the first time that I make a huge step into the unknown. I'm strong I think. Maybe this life experience is making me stronger and hopefully wiser, too. Thank you for letting me express what I'm going through right now and helping with your thoughts. It really helps a lot. I'm putting together a website with my paintings...I will paint my feelings, maybe I will share that with you, but for now I'd like to stay incognito.
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Loola... i am going to respond to that with this, and by getting very personal here.... I was in a 25 year, abusive, both mentally and physically, marriage...i finally got up the courage as my children were older, to ask for a divorce, i even had my one son stand by in case anything happened in that process. After going through counseling and really letting, perhaps, some change, go on, i asked him to leave our house. I helped him find a place to live and helped him move as he totally went into a child-like state during this whole mess.... After he moved out, he started stalking me... I knew i couldn't stick around the only home I knew for 45 years, i was born in that town, i raised my boys in that town and now i was being stalked in that town.... I had to pack up what i could and move 500 miles away to make sure he couldn't come knocking at my door.....I had to move with me my youngest, who at that time was only 14.... I had to start over, in a strange town, with a new job, no family near and no one to really call if i was down and out. The great thing was...that is where i met my special guy... on a freak experience...because i certainly wasn't looking for any man to be in my life at that time..... You can get out there... you can move on ...it may seem like a mountain of what if's in front of you... but it can work and it can be done... staying in a relationship because it is comfortable, because it is what you know... can do more damage than good.... you said yourself you are strong....staying in our comfort zone is easy.....having things laid out just the way we want is cozy.....you are right in that it is hard to just go...but if you must...then......go |
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kk- wow, thanks for sharing. I see your point. Thank you for the empowering words. So far I felt that it's more than comfort zone living. I do care about him, we shared some special time together. Some psychic told me that we have a karmic connection. Sometimes it feels that way. Since the beginning of the relationship we both felt so familiar with each other as if we had been together for years in another life. He is not abusive in any scary way, he is just disappearing along with any normal human behavior and emotions. He does have some unpleasant personality traits and never really cared about my future. I am still figuring all of this out. A couple of days ago, before he trashed my health care proxy and power of attorney drafts, I still thought we would be together for a long time. Aaaaah life and it's complications. It's a roller coaster ride. I agree with you, when you close one door usually another door opens. It's not good to stay in a place or do things that don't feel right. If you do things against your intuition and not aligned with your soul's purpose, the universe finds a way to kick your butt. |
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Loola - There is one, very powerful "white elephant" that no one has mentioned here, that must be. MONEY. Do you have enough to carry you into your retirement? (I don't expect you to answer that, but to answer it to yourself) If not, and if your BF is not making any moves to help ensure that you will be secure after taking the best care of him as possible, you need to get out. If for nothing more than to ensure that you are not working into your 90s because you have been taking care of others and not taking care of yourself and your own future. Your BF should be taking care of you for taking care of him. Bottom line. If he balks and keeps putting this off, he doesn't really want to do it and you should move on - whatever it takes to do this, you've got to be able to support yourself in the future, because he is not going to do it. (I do hope he proves me wrong should you decide to stay.) |
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| Very good point - parkinit. Thank you. |