August 9, 2021 at 7:03 pm #21586kathleen provorseParticipant
I also am a full time caregiver for my husband of 46 years. I am also a nurse who had to give up my job to maintain his level of care in our home. It certainly is overwhelming to not only see the level of care he requires,but how he seems to be a different person all together. It not only changes your life,but it seems to require me as the caregiver to maintain my level of calm which is nearly impossible.
I ask myself how do other caregivers cope with this? I have seen this disease and treated residents at nursing homes for 35 years. It is so different when it is in your own family and one person is totally responsible for day to day life.
God Bless each and every caregiver and hope we all stay strong
August 10, 2021 at 2:21 pm #21590DianaParticipant
Thank you for this honest post. My husband was diagnosed about a year and a half ago. He is now 64. I have already noticed many physical changes. He used to be full of energy and now he must rest a lot. He also shuffles and almost loses his balance quite a bit, but the thing I worry about the most right now is when he starts to choke. I have also noticed personality changes. I understand that he must be angry and frustrated, but he sometimes takes it out on me, saying I don’t understand and won’t be able to “deal” with him as he worsens.
I will do whatever I must for him, however I am honestly quite scared. As a nurse, you already have the temperament, experience and skills to deal with such a condition. I do not. I wonder how he will become and what life will be like. I hope that he will stay as he is, but I know that is unlikely.
I am afraid, and I often feel guilty for feeling afraid.
Thank you again for sharing honestly what it is like for a caregiver.
G-D bless you.
August 11, 2021 at 6:49 pm #21614Lorella HowardParticipant
I hear you all! I am a nurse educator who went to half time the year covid hit, then retired to just doing a couple online courses so I could be home full time as he is now needing constant supervision. My husband was diagnosed in 2000, retired in 2014, disease was slow in progression until last few years. His Duopa pump helps smooth the dose levels some, but he still has many times of dyskinesia or crashing low. We are trying different adjustments to try to get on a better track. This year, illusions and delusions have started, which are challenging, they were helped some by adding Aricept. Yes, I see personality and mood changes. I sometimes think they are more upsetting and harder to deal with than the physical challenges. I try to explain that what he sees is not really there, etc. He gets angry at times with his disabilities or how long it takes medication to work. He doesn’t want reminders, but gets distracted and forgets to eat, needs physical help with clothes, etc. I find my frustration level high, fatigue and sleep deprivation severe. I constantly remind myself that I’m not angry at him, but at the disease. When there are moments of clarity, and I see him being more himself, I try to savor it. It’s scary, and I try not to think that I may look back on these moments as “the good old days”! I don’t know how I would keep my sanity if we didn’t have 3 grown children nearby who pitch in and stay with him while I take another extended family member to multiple health appointments. Watching our children and young grandchildren have to deal with these changes in their dad and grandpa is both heart-wrenching and rewarding.
Is there any way you could have any home health help for a few hours a week? If you could get out a little, it would help you mentally and emotionally. If a friend could visit and talk, you would feel less alone. Try to keep up old friendships and as many connections as are comfortable. You need to take some “minute vacations!” Keep sharing.
August 11, 2021 at 9:30 pm #21615
I feel for you. What a roller coaster you are on. My husband improved with Mannitol First it was his non motor problems, apathy in particular, then many other symptoms.
He has just started using the Infrared coronet and Therapad.
I’ve had problems sleeping. My husband doesn’t have any issues at night most of the time. But, because I’m so stressed, I didn’t sleep well. Melatonin has solved that problem to a great degree.
I don’t know if any of this helps, but I thought I’d pass it on, just in case.
August 10, 2021 at 6:02 pm #21597
Hi Kathy (and Diana),
My husband was on the Neupro patch (Rotigotine) for a few years with great results. His major symptom was extreme apathy, as in not being interested in anything or doing anything. When it stopped working in 2019, we tried mannitol, after looking at the research and getting our pharmacist to check it out. At this point he was on the bed about 20 hours a day. He was also choking on food, had a PD mask, a soft voice and more. Within a week his apathy started to disappear and as time went by the choking disappeared and his mask almost disappeared. His voice also got stronger. The other thing that disappeared was his foggiest and dizziness in the mornings, which meant he could start PD exercise classes, which he does twice a week.
When my husband was in hospital and I mentioned the mannitol ( as I didn’t want him not having it), the doctor told me they’d been using mannitol in hospitals for head injuries and operations since at least the 1970s. Until now, there’s been no further research into it because (as our neurologist says) you can’t patient a vitamin or supplement, so there’s no money in it. It’s not just a diabetic sweetener. He takes 1tbs. a day in coffee, as suggested.
In recent times I felt that his apathy may be returning and his mask was definitely more apparent. So, not waiting to see where it’s leading, he is now using the Infrared Coronet and Therapad. Recent research here in Australia was very encouraging. My husband’s neurologist said that a number of his patients are using it with good results.
I am exhausted mentally as with the apathy increasing again, I’m having to push to get him to exercise. I’m just hoping the Infrared coronet etc works for him (and me).
August 10, 2021 at 6:29 pm #21599DianaParticipant
Thank you so much for your insight. My husband is a functional medicine doctor and based on information he read, he started taking mannitol a few weeks ago. He said that he feels that his arm is less stiff and he will most certainly continue taking it. I’m very pleased that he is going to Rock Steady Boxing classes three times per week and he is very engaged in that. He definitely doesn’t have apathy at this point, which I can imagine is quite frustrating to deal with as a caretaker.
My challenge is to live every day and not to dwell on future possibilities of how this will play out. Of course, PD is a very individual disease and nobody knows how it will progress for any particular person. I am hoping that my husband’s progresses very slowly and we can do some of the traveling we were hoping to do. We have only been married for six years and with COVID have not had a chance to “see the world” together as we were hoping to do in later years.
I hear many stories of anger and outbursts in PD patients, but it is not something I have found much information about online. This is my greatest concern, since as the caretaker we must be the ones to remain calm and to understand that the disease is talking, not the person, but from what I have experienced so far, that is easier said than done.
I am very appreciate of this forum and the insight of others.
August 10, 2021 at 7:04 pm #21600
Hi again Diana, you somehow have to stop worrying about what might happen. It’s easier said than done, I know. As you say, everyone is different and progresses at a different pace. Your husband probably will never be difficult to deal with. My husband is very placid, but his apathy drives me mad. I never was a patient person. I have to do the driving. I am bossy, so that helps😆
My husband doesn’t have your “garden variety PD”, as our neurologist says…if there is such a thing. He doesn’t have a tremor, which made it hard to diagnose initially.
I have a friend with PD who is 96. His PD has progressed very slowly. He’s actually the carer for his wife, who has dementia.
We can be very thankful for these forums, as we can support one another and pass on our experiences.
August 13, 2021 at 12:05 am #21633MarieParticipant
it’s all overwhelming at times. Add myself with migraines (and lots of bad weather lately) and a senior dog with health issues that my husband absolutely loves but can no longer walk, or get on the floor to pet, ( she is a beagle, who had double ACL surgery legs and hip bother her so she likes to sit making it hard for my husband to pet her).
It is dizzying the apathy, the depression, the anger, the whole ball of wax as you say.. when he is on a rant, I let him rant,, like a two year old, you pick your battles. I set his meds for he day every day. He takes them or not, wether or not he is awake or not. Some days from not sleeping well for two or three days, he is sleeping really and if I wake him to take his meds, do I know when he last ate?? I have many issues not sleeping as well. A momma’s ears.. but occasionally I get an hour or two of deep sleep, usually in the mornings when I know my son has made it home from the night shift, and after letting the dog out, checking on my husband, and then taking another hour or so to fall back asleep. Covid and lockdown made everything so much worse.
As like you, I feel anger and resentment, guilt. All for what my husband and I should have had. We are 57 and 55 respectively, now he rarely goes anywhere. Although he did make two family parties this month, went to lunch with friends from his last job, and a childhood friend. But gone are the days of traveling in our retirement. And he makes sure I get out for lunch dates with friends, today I canceled a date, he got mad I did. But the high humidity has been irritating my asthma so I have stayed in with the ac. I generally take a long weekend getaway with my sister, but due to covid, no respite for two years.. so stress levels are very high.
I am going to look into this mannitol. If it’s a sweetener, he likes black coffee, I can use that instead of truvia once a day. we are all caregivers, and stressed, and here!!! I love to read to get away!! What do some of you like to do to getaway???
August 13, 2021 at 10:59 am #21638Lorella HowardParticipant
Does anyone have research articles or websites for the infrared coronet, therapad, or mannitol? My husband is a retired Internal Medicine physician and doesn’t want to try anything he can’t read research on!
August 13, 2021 at 6:33 pm #21645
Hi Lorella, if you google mannitol for Parkinson’s Disease, you’ll see plenty of information on the current research, including scholarly articles on the research being done in Israel. What also popped up was an article on this site dated July29,2020. What isn’t mentioned is that it’s been used in hospitals since at least the 1970s for brain injuries and brain surgery. I found this out when I mentioned mannitol to a doctor in ICU at one of our major hospitals here in Melbourne, Australia. This was confirmed by our GP, recently retired, who confirmed that it was used for brain surgery when he did his training in late 1970s. My husband’s neurologist and our pharmacist both checked out the research. The neurologist did this after seeing my husband’s amazing improvement, particularly the apathy, but many other symptoms.
As our neurologist says, there’s been no research as “there’s no money it”. This also applies to vitamins and supplements.
As far as the Infrared Light therapy is concerned, there’s recently been research done here in Australia. The results will be published later this year, but in the meantime, if you google Professor Hosen Kiat and Parkinson’s, you will be able to see an interview on the subject. Our neurologist said Professor Kiat Hosen is highly respected. He also said that a number of his patients had tried the Infrared coronet with some very good results. There’s been quite a lot of discussion on the HealthUnlocked site and I’m assuming his patients got the details from there or maybe from here. The company that is most well known for the coronet and the pad (Therapad)is Wellred, again they are here in Australia and export worldwide. We have both, and will report on them at a later date.
I hope this helps.
August 14, 2021 at 4:32 pm #21648Blanche GlazierParticipant
I am a Board Certified Nurse Practitioner with 21 years experience as a Family NP, and 40 years experience on the General hospital floors, all kinds of ICU’s, OR’s, and Flight for Life. Am I prepared for the toll Parkinson’s has taken on my husband’s life and mine? NO! So I, like all of you, find my care-giver situation frustrating, and am extremely angry for all this disease has taken from us, as well as guilt for some of the feelings I have. I had all kinds of excuses for our dwindling sex life, his constant sleeping and apathy, and never recognized the signs, although I would bring up his symptoms to the doctors at every visit, and for 30 years they just blew it all off. Am I angry? You bet. At myself, and at the doctors, who were trusted friends. It all started with the apathy, and progressed to not wanting to participate in anything, although we have cruised around the world to wonderful places, including Australia, where I took many tours on my own. He used to be so neat and clean – now I have to beg, threaten, and cajole to get him to take showers and shave maybe 3 times a week. I bought a house, sold both of ours in California, and moved us 3,000 miles all on my own. He is a very placid person, so he is not aggressive, but on his good days is very resentful at how much control I have over his life. As a result, I have learned to back off, and on his good days, which are about 2 a week, if he wants to vacuum, or do things in ways he never would have before, I have to bite my tongue and fix any issues when he is sleeping, which can be 12 to 24 hours a day. He cannot process more than one step to complete tasks. I was used to him being able to do anything, run the house, take care of the kids and animals, maintain the cars, and plan for vacations, and anything we wanted to do. He was my rock, and the Wind Beneath My Wings. This is all so sad. So I understand what you are all feeling, and I am so grateful to know others have the same feelings I do. My husband has COPD, diabetes, Valley Fever, Leukemia, Anemia, Memory loss, and an Aortic valve replacement 2 years ago, so I had to retire at 78 to care for him. I resent these circumstances because I had been a nurse since I was 16 years old, and it has been my whole identity for all these years. I pray for the strength and fortitude for all of you to meet this monumental challenge we are facing. The Golden Years for all of us have sure presented the biggest hurdle of our lives. Keep sharing! It helps all of us.
August 14, 2021 at 4:54 pm #21649Corrie TrattnerParticipant
My heart goes out to all of you. My husband passed from Parkinson’s and Bipolar Disease on March 6, 2021. He was in assisted living facilities for 5 anf 1/2 years and progressively got worse as time went on. He also was getting sick for many years prior to his entering the assisted living when none of the doctors could diagnose what was wrong. In addition, which was really madening, the physical and psychiatric doctors refuse to talk to each other, which made things all that more complicated and difficult.
Many of you stated above that you are fearful of what the future will bring. I had the same feelings despite my being an occupational therapist and working with people with physical disabilities and mostly psychosocial issues and mental illness throughout my 50 year career. It’s different when it’s your family member whom you dearly love than when it’s a client of yours. I continued working the whole time so that we could stay on the health insurance and so I could have somewhat of a break from caretaking. However, being a college professor really didn’t give me much of a break. (I’ll be retiring at the end of this month).
I can miror your feelings of frustration, anger, exhaustion, and guilt. Sometimes, I still feel all of those. I think the hardest things for me were the worry about what was coming down the pike and how I would deal with it. Every day I would pray for the strength to see everything through until the end. Somehow, with G-d’s help, I did, and assuredly all of you will too. Some of the hardest things for me to deal with was accepting that I couldn’t do everything and had to get help as his condition worsened and that I couldn’t make everything better and go away like I would have liked to do despite all of my extreme efforts.
My heart goes out to all of you. Please try to remind yourselves that you are all strong and caring people and have more resources and reslience within yourselves than you realize. I send you all prayers of healing and comfort and quality of life for yourselves and for your loved ones.
I hope this is helpful. If not, hit the delete button.
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