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Topic Some random thoughts on caregiving Go to previous topic Go to next topic Go to higher level

By Emma On 2010.04.29 18:03
As I read these posts I am often struck by how dedicated caregivers are, but also by how exhausted, confused, alone and in need of support we are. Often our posts address issues that are difficult for us, that have us tearing our hair out, that cause us to feel frustrated, even hopeless. In this forum we have found a place to vent. And the reality is that for many of us this is the only place where our voice can be heard. Make no mistake, we are doing the best we can but we are not perfect. Sometimes we are less patient than we should be, sometimes we snap and say or do things we shouldn't. We're human. In spite of that I believe that most of us are loving, caring and compassionate to the person we care for. We see the struggle, we know how hard it is for the person with PD, we really do. And we try our best to make it easier.

Many of us spend a lot of time researching Parkinson's. How many of us research caregiving (and that includes the patients on this board)? Caregiver stress is very real. The impact on our lives and health is real. Yes, we understand that Parkinson's is harder for the patient than it is for us. Yes, we understand that the PD patient didn't ask for this disease. But you know what? Neither did we. And failing to acknowledge or respect the the impact that caregiving has on the caregiver is to do us a disservice. Study after study shows that caregiving takes a huge toll on the caregiver. Maybe when we complain on this board about things like messy houses or not getting enough sleep or unplugging toilets it sounds trite. It's not. I've said it before and I'll say it again, sometimes the whole is greater than the sum of the parts. We have a 24 hour a day job. We have taken on all of the responsibility. We cook, we clean, we do the banking and the yardwork. We deal with household repairs. we do all of the shopping. We take our loved one to appointments, we take blood pressures, we manage medications, we deal with insurance companies and various agencies. We bathe, dress and groom our parkie. We clean up bathroom accidents. We change the sheets sometimes several times a day. We try to calm down the panic and confusion that crops up from time to time. We lift our spouse or parent out of their bed, out of their chair. We cut up food and clean up vomit, drool, urine and feces. We do endless loads of laundry. We search the internet for adaptive devices that will make things easier for our loved one. We worry about money. In fact we worry about a lot of things but we reassure our person with PD that everything is just fine because we don't want them to worry about things they can't do anything about. Did I forget anything? I'm sure I did. We do whatever needs to be done and we keep doing it because we love this person with PD and we are standing by them. If we weren't we wouldn't be on this board.

So if we sometimes sound crabby it's because we are and we have a right to be. The things that are expressed on this board are things that are normal and typical for someone who is doing caregiving. We're tired and we're scared and we don't feel that great ourselves. We are victims of this disease too. In a different way than the patient, but in my mind a no less significant way. There is new research regarding the life expectancy of people with PD based on age at onset. In my husband's case his life expectancy is reduced by three years. As a caregiver mine is reduced by seven years. Just saying. Do not diminish the importance of the caregiver, or the toll that it takes.

So to all of the caregivers out there who need to vent, who need to cry, who need to have their voice heard, who need to be recognized and who have no one who sees what they do on a daily basis, no one who sees their struggle, I will be your witness. I hear you and I care about you. We need to take care of ourselves and we need to take care of each other. Bless you all for what you do.

By hubb On 2010.04.29 23:42
Emma, you write so succinctly and so clearly what I am feeling so much of the time. Even though we have been going thru this PD travail for so many years, the past 2 have become nightmares at time - my PD spouse and I are both 80 and have been married for 52 years, so have a long history together, but sometimes I don't know if it's PD or old age or a combination of both, but being a caregiver is the very hardest thing I've ever done in my whole life and if I didn't have this forum to vent to ever now & then, don't know what I'd do -- you don't want to tell family or friends what you go thru with cleaning up messes because they knew my husband back when he was functional so you just grit your teeth and go ahead and clean up all the messes and if you ever get around to taking your own blood pressure after taking his, yours will be sky high and then you realize you forgot your own meds while giving him his on time - sometimes it's just such a thankless job that you want to scream and wonder how you got to this place in your lives. But then my spouse will tell me how much he appreciates all I do for him and tht he knows he wouldn't be alive today if I wasn't taking such good cae of him and that helps a little, but then the chores begin all over again - never have time to read a book, never have time to sit down & watch a TV program you want to see, because as they get deeper and deeper into PD, it really is 24 hours a day with no let up even during the night. He has to have help getting up but we have learned to keep a big pitcher by the bed so he doesn't have to try to rush to the bathroom and the big pitcher works better than a regular urine bottle available at most drug stores. Also have learned not to put bedspread on bed any more as he likes to take a nap on top of the bed with electric blanket on high as that helps his aching back - so you learn to make do with different methods and keep on going, but it sure isn't easy. I'm so thankful we had so many years together which were great because that's what keeps me going now - when I look at old pictures - even those taken just 2 years ago, I almost cry, because he was himself then and this person today is so different most of the time and yet now and then, the old guy shows up and that keeps me going a little longer - such a yo-yo life and it is tough and there's now two ways about that. I have read and researched so much about Parkinsons that sometimes I think I don't want to hear that word again. So that's my vent for today - it's been a rough one, but maybe tomorrow will be better - we can only hope.

By karolinakitty On 2010.04.30 07:54
Thanx both emma and hubb for your insight .....

As most of you have come to realize that i get over-analytical and research the word 'boo" if i have to.....

I actually did a lot of research on caregiving, it's affects on families and the caregiver themselves. Divorce, seperation, abandonment were the more surprising aspects to me. But as Al said in a previous post, that doesn't seem to be the case here. Everyone that is a regular here, seem to be stronger in their marriages and relationships than the norm. I think that has a lot to do with our outlook at this disease and the strength that comes with dealing with it.

Depression, pychosis and just down right anger are other aspects that we need to be aware of. They happen even if we don't' want them to. We may try to put it away, for the sake of the caregiven, but it doesn't always work.

Having this board to release our thoughts and frustrations, could be one thing that keeps us sane. Being able to say what we think, good or bad, nice or nasty is in the eye of the reader or poster, but, still gives us the chance to get it out. I remember just crying my eyes out for months when finding out all the things associated with this disease. But when i found this board it made me realize that life isn't going to be pretty but i'll forge ahead.

Again thanx to Emma, hubb,Mary and annwood for they have been dealing with this so long and hard .........their wisdom and information is beyond compare.....

By caregivermary On 2010.04.30 10:24

Thank you!!!!!

By caregivermary On 2010.04.30 10:28

just read your post and I want to thank you also!

By LC On 2010.04.30 11:16
I'm am new to caregiving. I'm so glad to have found all of you. I feel better knowing that I can get angry and frustrated sometimes. Thank you for being there.

By parkinit On 2010.04.30 15:06
I, too, applaud this caregiver site. No, we are not planning on leaving. Yes, we want to take care of our Pder as best as possible. No, I don't need someone constantly telling me I shouldn't feel a certain way or shouldn't get angry or frustrated or "mumbly" sometimes. I feel so much empathy for my spouse; I'm literally, "parkin" my life to ensure he has the best possible life left with Parkinsons. I'm allowed to resent that occassionally. I'm allowed to get frustrated when I sit down for lunch with my parents (my own dad has cancer) whom I haven't seen in several weeks, and get a call telling my my hubby, at a meeting, just froze up and is insisting that I come get him. I'm allowed. So are all of you!

We don't turn off our own feelings because we care about someone else. We don't care less about someone else because we have these feelings. I love my spouse with all my heart. Allow us this time to vent, to go back hopefully a better person because we didn't vent on our Pder.

Blessings to all of you. You are all saints in my book!

By Mary On 2010.04.30 16:53
Emma, thank you for your post. I have often felt bad about my past vents because we have parkinson's patients on this forum and I always wonder how they must feel reading some of my posts. My journey with caring for Dad has ended but my heart goes out to you all still on that journey. During my care of Dad I would have never, ever, ever, ever thought in the end I'd feel like I do: blessed to have cared for him, willing to do it all over again, and missing him so terribly. Hugs and blessing to you all, you are a wonderful group of people and counted as a blessing in my life even though we've never hugged, Mary

By dkleinert On 2010.05.01 09:16
Dearest Emma - thank you for being who you are. Your email was needed by all of us. You clearly state our thoughts, needs, reflections and just life as it is with PD. Although the journey is different in some ways for all of us, there are so many common roads that we all travel so that what you say is so encouraging to ALL of us. Thank you for being on this forum and for always being there with your honest, insightful, candid posts. HUGS and Blessings to you Emma.

Hubb - thank you also. You state so clearly how I feel so many days, too. Today I am weary of how our lives are boomeranged around by my PD spouse's unpredictable behavior. One day or hour or minute - he appears seemingly "normal", the next - like a 2 year old who wants to be treated as a "normal" adult. Yes, all the cleaning and doing and redoing we handle day in and day out is most times overwhelming. Thank you for what you shared. We all can sing the same chorus. Hugs to you, too.

Donna in NC

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