For those who care for someone with Parkinson's disease
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| My husband has Parkinson's Disease and the last few months he has verbally stated that he feels useless. He often is immobile, yet keeps trying and is 100% wheelchair bound. I didn't know what to respond when he said he felt useless. However, I do know what to answer now after searching my heart and prayer. I will tell him that as long as he returns my love, he is not useless. As long as he can be a role model for others, he is not useless. As long as he shows grace in the face of this horrible illness, he is not useless. As long as God has him on this earth, he is not useless, because he is here for a purpose. I believe the definition of "useful" has to change for those in a chronic illness. Something I say to myself, now, is that perhaps his "purpose," is to allow me to learn and display grace, and that while, I, too, feel much less than what I was as this disease takes more and more of both of our time, we are learning something together. I am learning to be more of in God's will and a servant in the moment to God by serving my husband as best as possible. I am learning patience. I am learning inner strength and wisdom. He is not useless by an means. |
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To the men, don't you think that an awfully lot of men feel their "usefulness' to themselves and their family is tied to their job? Once they no longer feel the urgency to perform at a job, to make quick decisions, to forge the family's future, they begin to feel this "uselessness? Also, when the body fails, don't you feel *you* are failing? It is so sad that our society would make you feel this way...through no fault of your own, you are forced to feel this way...Just my life experiences telling me this...once my Dad retired, he went downhill quickly...no PD, but he felt at odds without his daily work routine. My husband is facing some big decisions in the next few weeks, some will be life changing...he said to me that one of them would be devastating at this "early" age of almost 66. I think that that is tied to the useless feeling...but, he is able so far to combat those feelings, in part because we know to be prepared. Like I have said, no one can predict what the future holds, but we can do our best to face the trials with courage. PD stinks, but it is part of all of our lives. We caregivers have the added responsibility to keep up spirits, to make our PWP feel our love, to help them feel important. Consider this..if YOU were the PWP, wouldn't he/she do the same for you? It often helps to step back, take a deep breath, and just listen...no comment...sometimes (we women especially) we just want someone to listen, not "fix" us...maybe a PWP just wants the same... No matter how we face PD, there is no good solution when anxiety appears. It is remarkable that caregivers with no experience in caregiving rise to the challenges. Sounds like you have, Parkinit..may the new year bless you both. Jane |
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parkinit, thank you for your beautiful expression. Your thoughts remind me of the meditation of John Henry Newman: "...Therefore I will trust Him. Whatever, wherever I am, I can never be thrown away. If I am in sickness, my sickness may serve Him; in perplexity, my perplexity may serve Him; if I am in sorrow, my sorrow may serve Him...." My Mom is such an inspiration to me and to others, always so patient and kind, in spite of all the PD difficulties and frustrations she experiences day in and day out. She remains so strong and faithful. She cannot begin to imagine the important lessons she teaches us. God bless all PWPs and caregivers in the New Year. |
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Jane, yes. I do not always understand but have learned how important it is to my father to do all the physical things he does to take care of our family. He has an important place and we depend on him; that is the way it has always been. It is difficult for my father now as he gets older and cannot physically do everything he used to do. For a few years Dad has said that when he could not cut the grass by himself any more, he would sit in his chair and prepare to die. But his arthritis is so painful now, he can barely walk. At the beginning of this summer I found a little push reel mower and was able to get us by. Dad came around. He was happy. He survived. |
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Well that's a sexist remark, lol, but I'm not going to be politically correct either so you're excused  the job and not working may contribute to feeling useless but it goes much deeper. Let me give ya'll a peek inside P.D. from my perspective. It's all I can show you and everyone's different but it may give a clearer view. It's not pretty but you're caregivers so you're all tough and can more or less handle it right? Diagnosed and told you are going to have to take medication all your life to "manage" your Parkinson's. Okay We really don't know what that means then. We start on med's and most times We don't notice kicking in or cutting out so at times we're late for a dose no biggie. As time goes on We can tell our drugs are working and when they are waning it's time to take med's (we're mostly on time in this period). As the disease progresses and drug's become less effective in "managing" P.D. they cut out sooner and we look at the time ..damn..still got over an hour before next dose going to have to push our way through till then. With early cutting out and long times awaiting kick in We tend to miss or are late for doses. We're so useless we can't even take our medication right! We spend the days bouncing between stretches of dropping things, fumbling things, falling, bouncing off door casings etc. etc sprinkled with bits of time we may almost feel normal enough to try to do something...useless! Mornings are good at pointing out how useless we can be. We wake to an alarm alerting us it's time to take first round of medication, fumble with pill container (by the bedside with a glass of water to take pills with) Wrap our ten thumbs around the pills and take them wondering where our fingers went during the night. Flop back in bed and wait for med's to start working or bounce off the wall, lurch into bathroom to answer natures call. Lurch back into bedroom and crash on bed still hoping pills will kick in soon or the G-d will take you if they don't! Useless. As the pills finally start to work you began to think clearer and the thought strikes you ..was I dreaming it or was the dog over by the bed stand lapping water out of the glass before you took your pills? With a bad taste in your mouth you lumber off to take the water thief out to answer natures call to her. Useless until pills kick in but as if that's not bad enough this dance is continued all day on schedule with our med's until time for bed. The ebb and flow of uselessness! Some People with P.D. add incontinence to the mix (useless!) Male and Female chores once done with confidence now done with trepidation ...uselessness. Young on set Mom's and Dads, Grams and Gramps not trusting their hands to change children. Shaking, wavering hands trying to guide thermometers to take babies temps...dancing Q-tips trying to clean little ears.....uselessness. I can't even imagine going through all this just to sit confined to a wheelchair. Add in all the daily tasks taken for granted but struggled with, because of this disease...uselessness! Then add in the questioning of what's wrong or how do you feel, why did you do that and the useless trying to answer with masked faces devoid of emotional cues misinterpreted and the questioners feelings or reactions substituted in place of the ones they don't see......useless. And that's just Me and things I see and run into daily others have Their own sets of problems and dilemmas they daily and hourly dance with over and over again. I know it is hard to watch and understand from a caregivers point of view. Sometimes We may question aloud what's the point or I feel useless but for some reason known only to the Creator we rise and dance again in the morning because it is the right thing to do...Useless? We know We're not, but sometimes, just sometime the question or statement slips out because at times it does seem pointless and useless. It's more than a gender role (both genders) it's more than a profession or job it's life, it isn't easy nor rosy it's hard but precious and full of lessons and miracles, learn and enjoy what you can. Be easy on one an other, My Parkie friends if you can help others understand, explain in you own words and situations, You will help Yourself, Your Caregivers and those who come behind Us tossed into this battle for no apparent reason. Take care, best of luck and hang in thereDoc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it. |
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Wow, Al, that was a wonderful post! Put me in my place again...lol...I guess it was a sexist remark about men...sorry...As always, those of us who are not the patient make simplistic statements meant to help, but that are just that...too simple...PD is far more complex and deserves a much wiser response than I gave...Well meaning, but you are correct...we can only guess...it takes someone who has to live with PD to really understand... And, you are never politically incorrect, My Friend...sometimes a bit crabby, but never harsh...lol...Jane, waiting for a quick response, but hoping NOT to have offended you...lol...crabbiness is in the eye of the beholder, I would guess...lololol |
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WADDA YOU MEAN CRABBY! lol, water off a ducks back my friend crabbiness is in the mind of the beholder he he he sticks out tongue and shuffles off! 
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| Parkinit: Thank you so much for your inspired words. I am going to copy them so I can remember them to help my husband when he feels useless and to help me also. As I ponder my goals for the new year I hope I can remember that I am serving God as I serve my husband with Parkinsons. This is a learning, growing experience for both of us. Again, thanks! |
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Thanks, Pootsie. As I said my thoughts were sprouted from a feeling of an inadequate answer, so I put more thought into it. Jane, my husband has been retired for many years and found many things more fulfilling than his career to him after his retirement. Yet his useless feeling is because he cannot engage in activities as in the past in his retirement. He can't roll over in bed, get out of bed, go to the bathroom,shave, dress, and many times feed himself. I understand his feelings because I know how active he used to be, and now he has to sit in a chair most of the day watching television or napping and has to ask for help for almost everything as he really can't do much more activity than this. We play cards and dominoes,but I really understand how difficult it is for him and I hurt with him because of his loss. Al, you nailed it, as usual. Thanks for sharing your perspective. I am hoping my words help others when their spouse says they feel useless as it is a difficult thing to hear from someone you love as you want to ensure they always feel useful and loved. |
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A very good friend of mine was an instructor at the airline I worked for, he tought whar we called "cockpit resource management", a.fancy term.for working well and sucessfully with other pilots, whether you were a captain or a first officer, or a better way of saying getting along and playing well with others. Anyway, before I retired at 54 because of health the mandatory retirement age was 60. He talked in one of our annual training sessions about a study done.on pilots. Seems that if a pilot made it to retirement, a 50/50 shot at best the average age of mortality was 68. If on the other hand a healthy pilot retired at 55, he on average only made it to 63. A medically retired pilot lived the longest, basically to normal life expectancy, discounting things like terminal cancers and other fatal conditions, whatever that meant. This was along time ago, but it seems that people who invest themselves in only one endevour, when that comes to an end find little usefullness in their lives, it was true of his father, and unfortunately him as well. I have other friends who I flew with who had other goals and drea mm s and lived much longer than expected. When I quit flying I became morose, I had defined myself as a pilot, now I was no longer one. Losing your medical for flying can happen for reasons that would not effect any other profession, so there really are a lot of other things a person can do, but your entire life is working for just that goal. I then became sicker, and began to realize I started to just become a sick person, thats just who I was.After the sickness got a name I became a pwp, poor me. My wife still had to work, she couldn't wallow in my self pity pit, I had to do something, and I did. I found out there are many things that defined me. Many of those things Al talked about are a big part of my daily life, somedays just sleeping in till noon and taking a nap are the best I can do, other days I feel like I can work all day, the latter less and less, but I continue to try. I don't ever feel useless, or a burden, I am just me, like anyone else doing the best I can with what my life is.I think if I start to feel useless then that is what I will become. I have no illusions about what MAY be coming down the road, there will be a time when I may not produce as much, but I hope and pray that there is still a part of me that can try, dream, or at least pinch a nurses bottom once and a whi l e. |
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See, Al? Steve said the same as I---just more eloquently! Don't we all hate this disease... I am sitting here waiting to hear how Carl's latest doctor appointment is going....He is at the local doctor who is supposed to arrange for his referrals from Dr. Christine, his flu shot, etc...He didn't "need" me to go, and since he is very capable of driving the two miles there, I am relaxing here at home...But, DO caregivers relax when a doctor appointment is involved? Ha, I doubt it... Thank you for your thoughts, Steve. As always, I value your and Al's comments as Carl and I navigate through this disease. I wish you well, Jane |
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Al, my husband does get up every morning "just to sit in a wheelchair," and I know it drives him crazy to be so confined. He isn't able to stumble out of bed in the morning or feed the dog. We stretch him every morning just so he can start some type of movement. I feed the dog and cat. Caregivers help with his ADLS. He does have incontinence and urgency. He is insisting now that he is sick, but he is just having a bad PD episode, so I sit here helping as much as I can. First he's hot,then he's cold, now his catheter is off, now his head needs up as he is struggling to breath. I've taken his temp three times, his oximetry reading once and his blood pressure several times. All are normal, but he keeps thinking it must be something else..But it is just Mr. P. I'm sorry he feels useless. Today, I feel useless because I can't do anything to stop this disease from destroying him. |
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| parkinit my friend, I know the feeling, I wish I had words of wisdom to give or something, anything to tell You to make it easier but I don't right now. Parkinson's Disease is a dirty fighter and seems to delight in kicking Us when We're down both Patient and Spouse/caregiver/partner. All I can say is I feel your frustration and pain, your sense of helplessness at the hands of this damn disease. The only thing I can do is remind you, You are doing your best and We here know that, (it isn't much but maybe it helps to know others know you are and We know all the love and caring you are pouring into the situation you're both in) Hang in there my friend, hang in there |
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Parkinit, you are my role model for being such a loving caregiver, and having so much grace in such a difficult situation. Thank you for sharing. |
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I don't know if I'm in any position to be dispensing "advice", since my initial whiny contribution, but since that's never stopped me before, I won't let it this time lol. What sprang to mind was Maslow's Hierarchy, and the things we as sentient beings need, and how we progress up the pyramid http://www.simplypsychology.org/maslow.html of needs when each portion is achieved. When my first experience with PD happened, it was my MIL...who had dementia, macular degeneration...and she hated things like tv and the radio. They disoriented her. She had always been a vibrant person, and even through her brain-fogginess, she felt useless. We eventually hit on a response...folding washcloths and tea-towels. She was helping me with laundry. And she often did this (with the same load of items) three or four times a day. If you can use that idea and come up with goals and tasks that aren't make-do, that your PWP can genuinely accomplish, it might be worth the effort. My husband is still involved with my start-up. No, he can no longer be expected to run Quick Books or keep the records, but he still contributes with brainstorming sessions. He still does whatever household tasks he feels he can manage, and I try to remember to acknowledge them, even if I have to quietly go behind him and fix certain aspects. He mentioned once that the loss of self-esteem was a hard part of the disease, and that being "cared for" really drove it home to him how dependent he is. Go figure that being "too nice" would be a strike against me lol. I have to fight back the urge to help on a daily basis. I help when asked, and I compliment when a formerly simple task has taken on Herculean proportions, but still gets (mostly) done. My PWP is a list-maker and a documentation nut...so asking him to do my family tree was a stroke of genius. He loves (showing off) telling me the different things he's discovered. Asking him to research things also gives him a sense of responsibility, and frankly, he has the patience to chase down things that would have me saying "Oh look! A butterfly!" and going off in another direction out of sheer boredom. Feeling "necessary" is an important facet of being a fulfilled human. Feeling useful and necessary isn't just a want...it's a need, as honest and important as food and clothing and shelter and love. We stop being "us", and we flounder without it. I don't give my husband sympathy openly. That'd simply start WW3. I'm more likely to chuckle and say "Get off your butt and take care of it even if it takes you a bit longer than usual" than to sympathize with his struggles, because the latter will only result in us both bawling. (I'm SO not the person on this forum to emulate, I promise!) (And OMG...one of these days I will remember to NOT ask him to smell a new candle fragrance. You'd think after this many years, I'd have that one down.) |