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Topic A Huge Responsibility Go to previous topic Go to next topic Go to higher level

By Freespirit On 2013.03.11 14:12
Hello, everyone. Just curious if any of you feel the way I do. I've been a caregiver for my husband who has had PD for 11 years now. As you know, it has gotten progressively worse, and during the past couple of years, the emotional side of the disease has come to the forefront.

My husband is very passive now and has so little ability to initiate. There is some memory loss, but not a lot, thank goodness (although I know it's coming). So, I initiate EVERY activity for him, such as okay, you need to take a shower today. I do EVERYTHING to maintain our household such as cooking, cleaning, grocery shopping, paying bills, etc. I make ALL decisons for not just myself, but for him as well. I decide what we eat, when we eat, etc I make all of his health-care decisions (he also has prostate cancer), all appointments, tell him what to do step-by-step each day.

It just occured to me (like I just woke up from a dream or something) that I am making ALL of these decisions for another human being and what a HUGE responsibility it is! In a way, it is like having a child, but yet, it's not the same thing.

My dear sweet husband is SO dependent upon me, and that is okay because I am his wife and companion, and I will care for him as long as we both shall live. . . The Good Lord sustains me in this. . . but it just hit me today about what a HUGE responsibility it is to be making decisions like this for another adult human being.

Anybody else feel this way?

By lilflower On 2013.03.11 17:15
I too am wife, lover, friend and fulltime caregiver to my husband. It's over 20 years since his diagnosis but I can honestly say this past year has been the most difficult. He is so dependent on me and at times it scares me because I worry that if something happens to me than what would happen. He still has days when he wants to get out in his shop and I try to let him hold onto that although I check on him every 10 minutes. I remember when he could spend hours out there and the pleasure he got from it so I try not to worry because usually he is ready to come back in after an hour or so, even if he doesn;'t get anything done I still see the joy he gets from being out there. We as wifes have our share of stress but we still have to let them try. And yes many times I feel overwhelmed but this is our life and he is my love.

By jcoff012 On 2013.03.11 22:16
Ladies, I am very proud of you both. And, am in awe. My husband and I are new in this journey, compared to you both, but we are not new to PD. We watched my husband's mom and dad live with this disease for over 22 years. They did so with dignity and grace, compassion, but, mostly with great love!

I realize caregivers, spouses in particular, face a great many, never ending challenges. However, I would like to think the love we give, all the decisions we must make, are appreciated and would be returned if necessary. I also know that my husband of almost 46 years has gone above and beyond for me, now it's my turn!

I went into this marriage as an independent person who has always done our taxes, balanced the checkbook, etc. my parents raised us all to be self sufficient...I can change a tire and my brother is a good cook who still does his own laundry, even after 26 years and two sons...

I see more and more responsibility being shifted
my way, but that's ok. I am his responsibility, which he has fulfilled with an outstanding pension, financial security, medical, dental, and vision care. He is mine...I manage his health care issues, manage our finances, and help in any way needed...I agree, it's a lot of responsibility, but with love, it all comes together.

Thank you for posting. It really helps me to focus on the reality of PD. I wish you happiness, but it sounds like you already have the love!

By parkinit On 2013.03.16 11:52
Yes, more and more. However, my husband says one week, "I realize I really need help." Then, because of memory issues as well as stubborn male pride, the next week he says, "What are you doing all this for? Why are you doing everything now? I have to remind him gently that he ASKED me to do things for him (financials, etc.). It's a wicked and strange, twisted disease.

By dkleinert On 2013.03.20 21:11
Oh, how I relate.
I wish I was as "in awe" as you are. I feel tired - just really tired of being the one to make all of the decisions, do all of the chores, carry every single bag of groceries through the long parking lot of our rented apartment building (we rented out lovely home out because we could not live there any longer because of my husbands needs), then put each and every item away, cook almost all the meals from scratch, do all phases of the many laundry loads per week that need to be done for all of the urine accidents that happen, pick up after my dear husband who drops things and does not think to ever pick up anything he uses or touches, handle all of our finances, pay all the bills, hold down a full-time plus job as a real estate broker, take him to each and every doctor and hospital clinic visit, take him to his activity center when he does not think he can make it alone the 1 block from the bus stop to the apartment (which is increasing in frequency now), make sure he has a haircut, keep the inventory going of his paper underwear, make sure he takes his meds, brushes his teeth, remind him I want a kiss and a hug before he climbs into his bed at night, help him dress and undress every day, ready his bed and tuck him in each night, handle all of the problems that come up every day, and soooo many more things - all alone. I know it is a huge responsibility, however, one I would trade it all away in a heartbeat if it didn't involve my loved husband. Joe didn't ask for this awful disease, and it is the one and only reason I trudge onward with him. I miss having a little time just for me, having someone cherish me, having the intimacy that we have not been able to share for so many years now, just the feeling of being held as we go to sleep, how he used to make me feel so special and loved .... I know Joe loves me in the only way he can anymore, and I deeply love him, I just sometimes feel so used up by the enormous responsibility and feel so empty and hollowed out inside of me sometimes. It all seems too much sometimes - the large responsibility.....we have been at this for only 9 years, and to hear you say what you did ini your post after a 20 year dx - I can't even imagine.....sorry I have a different, and I know, more negative slant on it all.....

By parkinit On 2013.03.21 00:18
dk -

I believe we all have at least "phases" of what you describe here. I know today, I just felt SPENT . . . USED UP. You want to rest and cannot. I'm in the middle of taking a bath this evening after helping hubby shower, dress, drive him to appointments, cook him breakfast, do his laundry (yes, we have those frequent accidents, too), work on taxes, talk to VA and remodelers for him, work part-time from home, and then I'm finally taking a bath in the evening when I have a chance to breath. He yells for me, so of course, wondering what has happened to him, I wrap a towel and run to find out what is going on. He is frozen and he wants me to check to see if the he left the water running outside. I ran out in the back yard with a towel around me after helping him into his power chair. I just wanted a few minutes to soak in the tub. Nope, didn't get it and I know these times will become less and less when I will even be able to get in the tub as his needs increase.

By Freespirit On 2013.03.21 09:23
I completely relate to the feeling of just being tired and feeling spent. There are days when I feel like I'm going to explode because I never have any time to myself. I feel overwhelmed on most days, but I just keep putting one foot in front of the other. I'm very organized and I think that helps, but still. . . sometimes I just want to stop and do nothing for one day.

Then I remember what my husband used to be like before this disease affected his life. He was always doing something to make my life easier. He would put gas in my car, carry in all the groceries, he did all the bills. I work full-time and he is retired, but he basically managed our home except for cooking and cleaning.

I grieve over what this disease has robbed us of. It has robbed me of the man I once knew; but he is still there. I see hints of him. And like someone already said, he didn't ask for this disease. The bottom line is that I LOVE my husband, PD and all. It is what it is.


By Lynnie2 On 2013.03.21 11:25
I can relate too. My husband was diagnosed at 59 and it going to be 65 this year and things aren't the same. I do most of the business now, but I let him do what he can. He pays some bills at the bank, gets out money if he needs it, and checks the books for debit and credits. Sometimes he gets mixed up or stressed about it, but I figure he needs to do it as long as he can.
He also gets the lunch most days or at least most of it. I was sick for a week lately, so he had to do more things for me. It certainly got him moving around more, so maybe I have been doing too much around here. You know how men are used to you getting meals, etc. and just sit and wait to be asked to the table.
He also helps clearing the table and drys the dishes. The dishwasher is another story as he never loads it properly (to my liking), but oh, well. He is better at unloading I think sometimes we tend to baby them too much.
He had to use the misrowave while I was sick, so I taught him to run it. So I guess I've been doing that too.
He also gets the garbage and paper ready on garbage day and the recyle papers and cans on that day. He still drives but tires easily so we take turns whenever we go together on a longer journey. He has excessive blinking which was interferring with the driving but now he has Botox injections which help that symptom. He has many symptoms, but his biggest challenge is fatigue or lack of energy and his lower back is weak. .
I know how you guys feel though as I was depressed at little in January. As I said, I do most of the business and I was stressing over that because I was thinking if anything happened to me, what would he do. I have power of attorney for some things so I can talk for him, which helps. I have made notes, so hopefully our kids could help or the financial places are good, so I shouldn't worry over something that might not happen.
I find if I start worrying about what is to come, it makes me feel helpless and stressed out, and sad, which isn't good for my body either. I
It isn't fun being a caregiver and I know things will get worse, but I try to take one day at at time, or one week at a time. We have a trailer which will go to in the Spring which he really enjoys, so we'll keep doing that for as long as we can.

I am thankful for this forum, plus another website called Daily Strength. If I have any questions, they are answeried and support given to me, so thanks for your input.

By jcoff012 On 2013.03.21 18:21
Donna, you misunderstood...I am in awe of all the caregivers who have gone so far and do it without praise or even a hug from a PWP who no longer CAN pass compliments...I meant I am in awe of that; I am resilient, but I do wonder if I will feel the same after ten years? I just meant, too, that handling our business affairs, medical appointments, taxes, etc. has always been what I do, so to me, it is everyday living, not added responsibilty...We also raised four children and have been our grandson's caregiver for over three years, while his parents work, so being a caregiver for someone who will be as needy as a child is also everyday living. We are retired, but our days are full with a three year old...remember potty training a boy? ;) Try it at 64-65 years old!

I don't know how some of these women (and Dan!) have the coping skills to do as well as they do, seemingly without support in many cases. I am in awe and amazement that so many are able to handle this horrid disease and do it without so much as a thank you everyday. As for the intimacy, I miss that more than you will ever know. My husband was and is my only male companion; unlike so many women, I have only been with him...we married at 18 and are 64 and 65 respectively. So, to me, that is the worst part. I miss "us"...

I realize in many ways we are "lucky", as if there is a possibilty of that with PD. We have great pensions, get SS, and have excellent Part B and Pharmacy coverage with Medicare. We were diligent years ago because of watching and learning from his parents' struggles with 22+ years of PD, and knowing what lies ahead, we got our "ducks" in a row early on.

That doesn't make us special...just better prepared than most for the financial part of this. I say that with great admiration and respect for anyone who had to hit this disease head on...unknowingly...

So, I am sorry if you misunderstood. I DO have great admiration for caregivers, as I am one...and have been many times...and hope to learn what to do firsthand with this awful thing called Parkinson's.

Hugs and love ALWAYS, Jane

By lurkingforacure On 2013.03.21 20:08
I deleted my prior post here...PD sucks for everyone.

By lilflower On 2013.03.23 21:57
It's not easy yes I am stressed and overwhelmed , but I love this man with all my heart it is the disease I don't like. I do everything and am exhausted most of the time, but this is our life and as difficult as it is at times I won't give up. When I have a bad day I give it to God in prayer. It has given me a peace and comfort and the ability to go another day.

By carman96 On 2013.03.24 09:11
Yes I feel overwhelmed much of the time. I have tons of things on my mind that I have to get done and he has very little to keep him occupied. I don't know how those of you who work and those that have kids at home do it all. I'm glad we have this forum to come to. Otherwise I'd probably think I was the only one in the world going through this!

By Freespirit On 2013.03.25 08:49
The point that I was feeling when I made this post was that it is it is a huge responsibility to be making all of the decisions for another ADULT human being.

When that adult human being, who used to be an equal in decision-making is no longer able to be part of that. . . and I have to do what I believe is best.

It is NOT the same as taking care of a child. I can't explain it, but it is different.

By LOHENGR1N On 2013.03.25 15:55
Freespirit, You are right it is not really like raising a child. Oh in many ways it might seem like it but I think what you were feeling and trying to put into words (please correct me if I'm wrong) is now deciding everything and making those decisions is an ever increasing role. Unlike raising a child, watching them gain independence. Growing to make choices on their own, now you're facing (as many caregivers/partners and spouses do with this disease) the reverse. A growing dependency and inability to make those choices anymore. You're right it is a huge reasonability and one that grows more over time. I don't have answers nor much advice I can give to help. We do our best and hope and trust that is enough. Take care, best of luck and hang in there.

By dkleinert On 2013.03.25 23:47
LOHENGR1N and Freespirit - you have it totally right.

That is the responsibility - taking on more and more everyday. No hope for the person you love to be able to be independent again (as they would love to be) is a huge responsibility. As I was telling someone the other day - if my dh wants a candy bar or wants a haircut or a magazine.....he can't just jump in his truck and get what he wants....he has to ask me or tell me or wait on me.....that is simplifying it - however those are real day to day things along with all the rest from clean clothes to food to drugs to everything......I love him, so I love doing it for him - even though I feel overwhelmed most of the time....I want to do the right thing by him all the time....he many times does not even see the danger in some of the choices he makes on his own.....he just can't process at the executive level anymore....G*d love him....

By Freespirit On 2013.03.26 13:30
You have it exactly. It is that failing of the executive functioning that I am talking about. Like Lohengrin says, it goes in "reverse." Everything is coming undone, and that is not only difficult to watch, but places enormous responsibilty on the caregiver. As you stated, sometimes the PWP does not even realize that their decision could put them in danger.

Yeah, so I was just putting this out there to get it off my chest. I wasn't necessarily looking for advice. I know it's part of the disease. It's all part of the "new normal," right? Which of course changes periodically. . . :)

Thanks everyone.

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