For those who care for someone with Parkinson's disease
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My very good friends of over 50 years can not grasp the situation we are in...me as a caregiver and my husband as a PWP. They try to be nice and invite us from time to time but are clueless as to the sadness of this disease. I am not a complainer and try with all my might to have a positive attitude. She proceeds to tell me all their travel plans and how busy they are and how wonderful their life is and how lucky they are that they are healthy. I am happy for them but..... Now that we are in this situation I hardly want to answer the phone when they call |
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I am sorry your friend isn't very thoughtful. Maybe she just doesn't know how to talk to you and then just tells you what she's been doing, etc...I don't know. You say you don't complain, but maybe you should just tell her what you have been going through and just maybe it will sink in. At least she'll know that your life isn't the same as it used to be and maybe she'll be more sympathetic towards you. I know it's hard and I feel for you as my husband has PD and things are not the same for sure. |
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| I have mixed feelings on this topic. On one hand I want our friends to relay the joys in their lives just like always and on the other hand I feel the pain of all the things we no longer do because of this disease. Friends don't always know what to say or how to act so I try to appreciate any contact and I try not to be a Debbie downer telling them all our woes (unless they specifically ask). I do always ask them to keep us in their prayers. All our close friends are aware of the PD. |
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It is doubly hard when members of your own family don't understand...*I* am the one who exaggerates how he is doing, etc. I have said this before...Although we all should be grateful for the high profile that Michael J. Fox brings to PD, he often presents an unrealistic picture of our reality. Our own daughter said,"Mom, it isn't so bad...look at MJF, he's had it a LONG time." My latest battle is watching my husband exercising so much...he finally admitted why...we are flying back East and part of the time he wants to put a roof on his sister's house! Imagine a PWP on a roof, let alone the physical strain...HOW can his side of the family, whose Mom had PD for 22 years, ignore the disease and allow him to do this? I am bewildered... Like your friends do to you, I see this as self centered to the point of screaming...'WHAT is the matter with you?" But, we don't and won't...because, bottom line, if someone doesn't have to face the daily trials, it just simply easier to ignore the signs... One last thought...perhaps your husband prefers that others remain the same around him...going on with life, talking about the future...because he knows his future....just a thought... |
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it is not easy, never easy, and the friends who still express an interest in us are so precious. My husband is making contact with people through Rock Steady Boxing. The people are so kind and I think about them often between sessions. |
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First, I don't believe that any one who isn't also walking our path will ever "get it". No way. The things I now do and have to handle that I never, ever thought I would just boggle my mind. I would never understand how hard it is if I weren't actually doing it myself. Second, PD puts us in a very difficult position. If we say what we think, or what we need to say for therapy, we may run our friends off because it's just too depressing...that is, if our friend has even stayed around this long...so many seem to flee as soon as we tell them we have PD in our life. But then if we don't share how hard things are, people think our PWP is like MJF and "he's doing so great!". I also think a lot of people just flat don't know what to say, so they talk about what all they are doing, and of course to us that sounds incredible, because the last time we got to travel together was....or the last time we went to a nice restaurant was..... you get the idea. Anything they do sounds amazing, because we don't get to do any of those things and most of us probably haven't in a very long time. Our lives revolve not around concerts and cafes and travels, but around doctor appointments, therapy sessions, filling prescriptions, etc. I don't blame people for not "getting it", but I do get angry if they minimize how difficult it is ,because unless they have been a caregiver too, they have no clue. |
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| What annoys me is when family see that "More to Parkinson's" commercial and think that makes them an expert. Or they had an uncle one time they saw for 10 minutes a year, so they "know." I have an aunt whose mother is a retired nurse (in her 80s), and gets "advice" from her and then tells me what I should do. Good grief. |
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| I know, I absolutely agree. It's just tough all around. I listen to the few friends we have left talk about their lives, or...what even seems worse to me, is...seeing them, watching them...being invited to someone's house for, say, their child's birthday party and my kids and me seeing this family in all their "normalness", with the happy, bouncy mom and strong, fun, sharp dad, working together as the parental team, and the happy kids with the security they feel from their parents, and all the joy their home life brings them...my kids and I feel like the chasm between their house and ours is more like the Grand Canyon, and it is almost a slap in the face of how shockingly different "things are" at our house. It makes it all the more depressing to go home. I try my best to keep life upbeat for my kids, but there's really no hiding the truth of the situation. I REALLY HATE that this is my children's childhood, spent this way. I REALLY HATE this disease. |
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Busymom, that is why I posted that link to the article about raising kids when you are also dealing with dementia of a parent in the home. What I got out of that article is that it is not healthy for kids to spend much time at home, because it isn't a representation of "normal" (whatever that really is), and it is depressing. Kids that are busy with outside activities do best, which sadly means time spent away from the dementia parent. I also have found that there is another hidden danger, if you want to call it that, with having your kids spend a lot of time around the dementia parent: it can distort their perception of what a healthy emotional relationship is, and damage their ability to have those in future relationships themselves. I'm not saying ignore the dementia parent, that would be cruel and unfair, but what I am saying is that kids don't have the tools to understand the nuances of dementia. When my husband tells our son to stay away from him and stay out of his stuff (yes, he really said this), my son is hurt, angry, and by golly, he will stay away from his dad just like his dad said to do. He doesn't have the emotional maturity, yet, to see that his dad can't really be held responsible for everything he says and does. Our oldest has been in counseling for awhile now because of the damage her father has done-much of it long before dementia came into the picture. I worry about her ability to have meaningful, healthy relationships with guys because of her childhood. Despite everything we do, our kids will be scarred from growing up in a PD household. I hate that more than anything, and just hope that one day they will understand more than they are able to now. |
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I'm a teacher in Washington State, and my principal asked me to go to a training in Florida this summer. I told him I can't because I have to look after mom. He told me it was only 3 days (!!!). I then had to explain that she takes medications every 3 hours, dad doesn't know how to do it, etc. (I didn't go into how she's weaning off lorazepam, I have to mix it with water to get the correct dose each day, dad would never do this in a million years and even if he did it wouldn't be done correctly, if mom happens to spill it, or miss one of the pill doses, she'll end up in the ER again where they will just give her more and we'll have to start all over again, yada, yada, yada). I'm a 44 year old man living at home with his parents (I'm an only child), and people really don't understand that *I'm* the parent now. I've been thinking over the past few months that I need to come up with an emergency plan if I end up in the hospital for whatever reason, but I honestly have no idea what that plan would be. There is virtually no one in the family who I would trust capable enough or responsible enough as even a stop-gap measure. So far I have thought of leaving detailed instructions for her daily med cups, lorazepam weaning, etc, and just hope for the best. In regard to children in a PD household, my life experience is slightly analogous. I know what dealing with mom's PD has been like as an adult, and I know what dealing with dad's severe Post Traumatic Stress Disorder from Vietnam has been like for my entire life. I was always a fairly emotionally mature child, but still, there were many positives that came from my experience (none that I would have recognized as a child). I'm generally more patient with people, my emotional intelligence is higher, and I'm more aware of my own emotions (and more in control of them) than many others. I became a teacher in part because of these traits, and I've been thinking over the past year that I'm not sure I would have been so successful (thus far) in taking care of mom (and myself and dad) if I hadn't had those childhood experiences. But definitely the kids need time AWAY. Mom used to take me to movies from the time I could walk to get away from dad for a while. Often we'd just go to grandma's house. I didn't understand it then, but I can still remember the intense RELIEF of knowing the next two hours would be "normal". Loving movies lead me to loving stories...to loving reading (which I also loved because it relaxed me)...to becoming a high school English teacher...which is why I've written too much again, so I'll stop. |