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    • #22699
      Mary Beth Skylis
      Moderator

      I recently had the chance to see how my mom is caring for my dad (a PWP), as his symptoms worsen. On most days, he is able to complete most tasks on his own. But she still likes to cook for him, and make his coffee. How much time do you spend caregiving? And has the amount of time you spend changed drastically over the last few years?

    • #23041
      Marla Klein
      Participant

      I am Caring for my husband most days he does pretty well but he is no longer driving for past 7 months so I now spend a great deal of time managing his drs appointments ensuring he takes meds on time his meals and driving him to therapies boxing and speech. He stays home much more than he did a year ago and I try to be his social connection to outside world. Invite couples over take him to market which he loves to do and encourage him to have a name friend come over or go to there house a bit too. He can still dress on his own but sometimes needs help with zippers buttons shoes and I have put a calendar so day to day he knows what is needed where we are going and when I leave where I am going. He was asking the same things to many times in a day so this has been helpful.  Seems to help keep him less stressed if he knows plan and what is happening. I feel I have gone from being his wife to more being his caregiver. Not fun the change but in it for the long haul. Some days harder than others. He has had parkinson for sometime just wasn’t diagnosed till he began to fall shuffle more and have trouble dressing now that he is with the right neurologist motion dr things are better but he still likes  me close by. Hard part our kids Live far away and he doesn’t want to travel to east coast says to hard for him. We live in Calif. grateful fir the good weather abs we got a dog first time for both of us that brings him a lot of joy and he walks him in the front of the house twice a day  and lives having Oscar by his side. The dog emotional has been great for him abs I actually derive pleasure from our Shitzu too. I k ow as time goes in there will be more caregiving needed abs I will get help we need to maneuver through Parkinson. I just never thought I would be doing this at 67 but I find peace when I get out when he naps with a girlfriend for a walk chat or whatever. Blessed to have good friends

      • #23045
        Ally
        Keymaster

        Thanks for sharing your experience, Marla. It’s good to hear that you’re both enjoying the dog and that you’re able to make time for yourself or to spend time with your friends. Have you and your husband discussed hiring professional support – maybe not now,  but in the future – to help you manage everything?

        • #23056
          Marla Klein
          Participant

          He is not ready for that I have to pick my battles but I have tried to find sone resources a lot of caregivers are expensive and until i can’t do stuff for him I don’t want to spend a lot as I fear the day will come when he will need a lot of help as Will I need the help so I’m trying to wait. The volunteer groups have long lists of wait time too and since  he will not even do an assessment to see who would be a good fit I have backed off for time being. It took a month of arguing that I need to see our kids more and I hope he comes but he feels to much commotion mouse and just to hard to travel to east coast. He finally gave in and said I should try to go . I said it would only work if we have d as I sone stay here to make sure he is ok with friends checking in too. He agreed I think I have someone who works from home a perfect set up as right now he is dreading eating etc on his own so just needs someone here and meal prep and make sure he takes meds walks dog and gets to gis therapy. I’ll look into hiring someone to drive him days I’m gone. So I am planning it. I had him sign a contract that I could go and he agrees to help bec he is somewhat forgetful at times so I wanted that paper signed so he goes to say he didn’t agree lol my daughter thought of that. But as far as long term help I want to save spending till absolutely necessary.

    • #23051
      Roy
      Participant

      This is Roy’s wife, his caregiver. Roy was diagnosed in early 2017, although we had been working with a team of doctors since 2015. I retired in February, 2019 to assist him with his daily living tasks. Our days vary, some days are great and others are exhausting. I have seen some deterioration lately, so we are seeing the neurologist on Friday.

      In general, Roy on a good day walks, independently bathes/dresses, and is independent with quiet-day activities. He may even walk and feed the dog. Other days, he needs help with almost everything he does during the day.

      Roy is no longer able to manipulate buttons, snaps, and longer zippers(jacket). He can’t tie his sneakers any longer. He has difficulty with using any knives except butter knives or spreaders. He is easily confused with the microwave, his flip cell phone, and the TV remote. I administer and order all medications and schedule/accompany him to doctors. Roy no longer drives and it isn’t safe for him to be left alone on days when his blood pressure is very low.

      My days and nights are caregiver, chef, cleaning lady and laundress. Keeping his bathroom clean and washing soiled clothes are daily tasks that must be done for sanitary reasons.

      Lately, he has been experiencing falls, usually due to low blood pressure, which makes him very loose, moving as though he is under the influence of copious amounts of alcohol. His common sense for his safety is sometimes compromised. When I leave him on his own for short periods to run errands, I worry about his safety. I try to bring him with me as much as possible, so I can keep an eye on him.

      He cycles through periods of insomnia due to restless legs. Then, his days and nights are flipped. These are very hard for me, as I have always required regular sleep. Last night, Roy woke me up every hour to help him get safely to the bathroom. He finally fell asleep at 5 AM and the dog had me up at 8:30. I am truly exhausted 5/7 days per week.

      I can’t imagine how things will be when he isn’t ambulatory. The future scares me and terrifies my sweet guy. He knows things have gotten difficult for me, as they have for him, this past year. He asks me if I’m going to leave him. This happened to a neighbor that had PD. I reassure him that I’m in it for better and for worse, that I despise PD but love and adore him, and that where I go he goes with me. I pray daily, at least, that I be given the strength to follow through on those reassurances.

    • #23055
      Marla Klein
      Participant

      To Roy’s wife

      Oh I so get it I just joined the forum I believe my hubby has had parkinson for about 6 to 7 years maybe bit longer it started with essential tremors so they thought. As time went on meds didn’t help he grew more aggitated and about 2 years ago began to have more problems as I described in my post but because of COvid took us awhile to get to right neurologist. Thankfully I got his regular dr to get us in big physical therapy and that helped a bit . Also he wears the guardian necklace that detects falls and he can push anytime. That allows me to get out a bit wout fear of him falling which seems to be under control right now since he is on the parkinson meds. He also does loud speech therapy as his voice soft goes in and out as of late. No one prepares us for what it is like the emotional and the physical and the oh my what’s to come things. I feel beeline many days.  His dad had it at his age and he saw how he progressed so that scares him a lot as it does me. But there are new meds new ways of treating that when we  embrace it all it does help. He has a pedal stationary thing that he uses while on a chair watching tv as he can’t ride a bike or drive any longer. He gets upset when I answer for him but he is so slow at times hard not to but I’m learning patience is everything. Some days actually a lot of days I feel like I’m taking care of a toddler. The change from husband to this at times so hard  I don’t think I anyone can get this unless they walk in our shoes. I never understood his moms anger toward her husband when he got sick and couldn’t do things. My husband was a kinder soul before this smart as could be now forgetful joy in his eyes dimmer. He had beautiful handwriting and was a neat person now writing small shaky even with heavy pen. We fight over taking showers over changing his clothes and it got real bad I wasn’t sure what was going to happen. But then a friend suggested a calendar wipe board  and it has  helped to have so many less arguments. For awhile we were both sad maybe a bit depressed and now that we have a system going with good therapists and  drs we are a bit more relaxed and accepting of all of this I had retired after him and I was hopeful of visits to my kids maybe few trips we always put off now I’m lucky if I can get back east to my kids. I am going to try in early summer but if he doesn’t come I have made it clear I need to go to see my family and I will bring someone in to stay here while I’m gone a week. My nieces wedding in April he doesn’t think he can make it beyond service so we are now going to go and spend a night in hotel even though less than hr. from our home as he can go and if he needs to go back he’ll be able to where my daughter from New York and her hubby and 2 kids will now stay there too. I got a sitter g For the two boys and hw m it’s the gal B so if he goes back early she will be there if he needs anything. I’m calling it a mini retreat. Not my idea of a European vacation or river cruise but heck I will not miss imp things if I can figure it out. Trying to be Creative,  trying to pick priorities and trying to be true to me in all this too.  It’s exhausting I love that he goes to sleep at 8 I stay up to watch Tv usually the silliest  shows that  I can find and just veg <span dir=”ltr”>till 10 ish</span> then sleep and  start our next day . He gets tired easily so I get a break <span dir=”ltr”>around 1 to 3:30</span> daily as he naps and I try to go out with a girlfriend for quick coffee or walk to keep me sane for an hour or two. Life is so diff than I ever thought it would be but we are trying to navigate and be Crestive along the way where we can be too and stay on a tight budget as I worry about future his needs and how it will impact us . It’s a lot and st the same time I try not to burden my family or friends with all that is happening. My kids saw  it when they were here and saw his behavior change over a  few years. They said they wondered why I stayed but now knowing part of the behavior was his parkinson they tell me they are happy I stayed happy I am trying and they are here if I need anything. I just feel they have alot on their  plates with  covid small kids so I try to just take it one day at a time.

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