Helping Those Who Care for Parkinson's Patients
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| My husband has PD, and we have known for 4 1/2 years. I think the hardest part - the part that makes me want to run out of the house screaming and never come back - is the Dementia. One minute Joe is lucid, beating me at cards - the next he cannot remember that he said he would take the dog outside. He is stunned when I ask him if he took the dog out....."what are you talking about" he says.....and on and on and on it goes all day long. What are those lucid moments or minutes that happen? Sometimes he is focused for part of a day - actually accomplishes a task he says he wants and will do. Other times, he goes days without doing much of anything. I guess it gets to me because I work so many hours and because Joe no longer drives, and we don't really have anyone I can share this responsibility with.......so - I want all of you to know that YOU are a God-send to me. You reaffirm my sanity. You help me see what is happening in your lives as you deal with various stages of this AWFUL disease. So much worse than cancer or Alzheimers Disease. With Alzheimer's Disease the person who has it eventually won't remember anything. Cancer - they may be a cure you can work toward and hope for. PD - it just slowly takes the person away, piece by small piece. We get to watch and try to pick up the pieces and still handle all the MANY balls that are in the air. I don't know about any of you, but I am ill-equip for this. My sister is a nurse - I NEVER wanted to be a nurse. I am the creative one, the energetic one, the one who could do 3 things at once. But this - PD - it has taken so much out of me...........My husband does not appreciate me at all - or so it seems. He is withdrawn, and if I ask him to help with something I know he can do he is annoyed with me. He leaves things laying all over the place.....toothpicks, kleenex, sox - whatever. That annoys me so much. I get so tired of picking up after him. I ask him to please put those things in the trash, plates in the dishwasher, on and on - he only is annoyed with me. I never expected that at age 61 I would be a nurse/caregiver. I am still healthy and don't feel old when I am not at home. But when I am here - cleaning up so many things, doing all the many loads of laundry, cooking, taking care of everything - I feel old. What do we do? I too, as one of you said in another post I read - become so upset when people say "Poor thing" and "Bless his heart" for Joe. They NEVER ask about me - how am I or do I need anything......it is always poor Joe.....I know this sounds selfish, and I have never been a selfish person. Just lately I have really begun to feel deprived. Deprived of a social life, deprived of all the things we used to do with other couples, going to the theater, recreational activities, on and on. Joe cannot participate and does not even want to, so we stay home except for going to the movies and maybe out to eat once in awhile. Money is so tight since Joe has not worked, and I work my jobs, that there is no longer money for fun things or disposable cash as there used to be. Enough of the pity party.....thanks for listening. YOU ARE SO WONDERFUL - all of you - for all you GIVE to me and all of us here! God Bless YOU! |
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For whatever reason I am still awake and not sleepy. Maybe I was supposed to read your post at this hour. I do know what your saying and I believe many on this forum will also know. It is so very hard and the fatigue, anger, hurt and overall stress do take a toll on we caregivers. I think the lack of understanding that often takes place among family member, friends and associates is also hard to deal with. Many people don't want to wittness or deal with the decline so they quit coming around. It does hurt to see life going on around you and you are no longer a part of it. The dementia, for me, was the hardest part of my husband's illness. You can deal with the physical limitation but never knowing where they are mentally makes you feel like Alice in Wonderland. My husband would be in never never land for a week and then suddenly there would be a day of lucid behavior. Just enough to give you some hope and then away they go again. As aggravating as it is I think much of his behavior is common with dementia. There will be a time for you again and when it happens you will be so much more appreciative of the things we took for granted - like a full nights sleep, freedom from stress and the ability to go where you want and when you want. You will have changed and you will be a better person for all of this. I am your age and I never wanted to be a caregiver. We had great plans for the future before PD took all of that away. Don't ever worry about a pity party - it sounds to me as if you are doing all you can and it is very hard. Your feelings are very normal in your situation. I am also glad you found us - we are always here to listen and help in anyway possible. By the way, we also want to know how you are doing. Hang in there! |
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I haven't posted much, but lately I find myself coming to this site every day. It's my own private support group. I have a lot of supportive friends and family. But only you folks really now what each day is like. Thank you for your posts. Dkleinart...I could have written an identical post..each morning I get and go clean his nighttime snacks up...dishes in the sink and on the table next to his tv chair. This morning he must have burned whatever he cooked in the toaster oven. The whole house smelled like burned toast...crumbs all over the counter, etc. etc. He spends days (literally) 'cleaning' up the basement. He tells me nothing he does is good enough for me. If a way he's right...he doesn't finish anything he starts. I'm always the cleanup crew after his projects.There are boxes everywhere ...mostly filled with a year's worth of useless eBay purchases. Those were the product of his Requip, which now has been reduced, and thankfully the compulsive shopping has pretty much stopped. I tell him before we go out to change his shirt, which is covered with cat hair, and I get an annoyed look. The sloppiness is really hard for me. With 4 kids, our house is never immaculate. But now he will throw away nothing! He's sure he can fix anything. Trash day is now my favorite day of the week...he sleeps in and I can fit a lot of junk in that can! The past few months have been very difficult...the economy, the holidays, and winter in New England is such a down time in the best of circumstances. I'm starting a much needed job this week and while it will be great to get out of the house, I'm worried about how I'll get it all done (I'm the only driver, and like the rest of you, I'm now responsible for mostly everything to do with the household). I'm worried about school vacations when the kids are home and have to deal with him. He is clueless with them and is often so incredibly impatient and unkind. I figure we'll see how it goes, but I know enough to realize that his behavior will not likely improve. I feel his meds are all working fairly well for now...as long as I make sure he takes them on a timely basis, but it is just so so hard on me, but more so on the kids. They are each different, but one of my sons said this week that he is just so tired of his dad's crap...the moods, the comments, the questions, the necessary repetition, etc. I sympathized with him, but just wonder how they will handle all this as time passes. Well, as you all know, I could write volumes, but I won't. I just wanted to thank all who contribute for their supportive posts. And thanks for letting me vent a bit tonight. Reading these posts reminds me that we are all doing the best we can in very difficult circumstances. Thanks. |
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Dkleinart, Your post sounds SO familiar to me as well. My sister & I are trying to take care of our 69 year old mom & we have absolutely no life for ourselves. Mom doesn't think all we're trying to do is necessary. In her mind, she should be able to stay alone & do whatever she wants. If she can manage to walk anywhere alone she leaves trash & food everywhere & drawers & cabinets hanging open. Her pants are rarely pulled up all the way & she wears shirts backward &/or inside out. The only thing she seems concerned with is her hair & it's a mess even when she combs it. She constantly complains that we won't let her do anything except sit in a chair but she has no appreciation for the fact that the only places we go are to the grocery store, work or ER when she takes one of her bad falls. In many ways my sister is better at dealing with mom but I can't use that as an excuse for letting her do the majority of the work. My immediate family is very co-dependent & I spent years trying to help mom deal with my brother's drug abuse. I took care of my husband who died of cancer & raised our son alone from the time he was 2 yrs. old. I never tried to have a life of my own because I thought once my son was grown I would have be able to make a life for myself. I will turn 50 in a few weeks & now find myself once again responsible for taking care of someone else. I feel guilty that I have such resentment toward this situation. Most days I wish I could move somewhere where no one even knows who I am. I'm so tired of listening to mom babble & not be able to understand her, help her get to the other end of the house where she can't remember what she got up for, standing behind her to keep her from falling while she makes a mess doing something I could have done in 10% of the time, etc. I'm sorry that others are experiencing the same feelings I am but it helps alleviate some of the guilt I feel about those feelings. I too appreciate all the support & advice this forum offers. |
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I often wonder how I would feel if my PDer were a parent and not my husband. It has to be so different. In a way, and this may help those of you caring for parents, I think I would try to remember that my mom/dad spent years running after me, wiping my butt, feeding me, etc., when I was a baby and unable to do any of that myself. Then later, driving me everywhere I wanted to go, needed to go, making sure I did my homework, practiced my piano, etc. You see where I am going with this, I would feel, personally, that I was helping them as they had helped me. PD makes it damn near impossible though, since this is not a situation where you merely help someone take care of themselves. But this general line of thinking might help. The grass is always greener, though, huh? I bet those taking care of parents often think it'd be "easier" if their loved one were a spouse. It sucks big time no matter what your situation is. One more thing: on the son tired of his dad's crap: if he's a teenager, keep that in mind. They are hard to deal with even in an ideal situation. I am trying to read "The Sweet Potato Queen's Quide to Raising Babies for Fun and Profit" which is a hilarious take on raising kids (obviously written by a deep southerner!). She has a portion of the book on teenagers and it was a great perspective: that baby/toddler/child you so love is trapped in that obnoxious teenager's body, and if you can just keep from killing him/her when they roll their eyes for the umpteenth time, they will emerge at some point, the child you love, normal again. It is really funny and good if you have kids of any age. Hope this helps. |
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I am taking care of both parents, a mother with Lewy Body Dementia and a father with PD. Take it from me---it is totally different taking care of parents rather a spouse. I too, never wanted to be a nurse but here I am nursing and believe me I am not cut out for this. I do it because I love my parents. Yes they took care of me when I was a child, but who ever though at this time of my life I would be caring for them like children. I liken it to having a set of twins---BIG ones... With a spouse it's your house, your finances, your bed, ETC. Get the picture? Neither is easy. The stress slowly sucks the life out of you. This is not a good time....I can't even remember how it feels to be free to do as I please. God bless you all---I feel your pain! |
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Number1, I have been wondering how you and your parents are doing. Good to see you here today. Lorraine |
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| I second that. I really don't know how you no it - you are a wonderful, compassionate daughter and at some level they know that. I often think of you because you have double the problems. I pray for you. |
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| number1daughter, wow, both parents = you really have a lot on your shoulders. I take care of my Dad and it is extremely time consuming. I'm in your corner, have an idea of how you feel, and sometimes only a good night sleep helps. I hope you at least get that once and a while. Caregiving is exhausting. I think caring for a spouse would be easier for me because I could be more honest with my husband than my father with how I was feeling and working out tasks in a way that would be easier for me and not exactly how my Dad wants to do things. It is hard for me to say "NO" to my Dad but not my husband! God bless, Mary |
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Thanks to all for your understanding. I agree with Mary. I think it would be easier with your spouse. (Of course EASY is not a word in the vocabulary of a caregiver.) You can be yourself with your spouse versus a parent. It is quite a job with 2 to care for. 1 is worse than the other. Daddy fell day before yesterday ( not the 1st & won't be the last time ). I haven't posted for a while but have been with y'all everyday. I read what y'all have written 1st chance I get in the morning. It means so much to touch with those who live the life.Usually I just read and don't post because I sound sour and furious most of the time. Thank you Annwood for answering my request for your talk on care giving. It was exellent! |