Does anyone have experience dealing with a loved one who has Parkinson's and can offer any tips/advice for caregivers?
My mother has had it for a few years now, and while it was initially under control with meds, as a progressive disease, both the physical and perhaps more noticeable the cognitive/emotional impacts are starting to manifest (in combination with her diabetes).
My sister and I have tried raising concerns with our dad in based on things we've seen in terms of extreme anxiety and possible depression & withdrawal from social engagement but he's very protective and doesn't want to upset her more (he's also very mild and gentle and she's more of the stubborn/strong type). She refuses to go to any Parkinson's association group meetings or to sign up for activities. Just stays at home and goes to the odd lunch or dinner out, but otherwise has no ongoing retirement activities and basically eats, sleeps and watches TV most days unless she has an appointment. My dad is battling early stage cancer, so it's likely in the near future, I'm going to have to step up with a more active role in their care (which is challenging because I don't live close by, have my own young family etc)
It's a helpless feeling as they struggle, because you realize it's their will to survive that takes over every fiber of their being, every minute of their daily existence. I wasn't able to do much except listen and try to help them keep their spirits up, try to occupy them for brief periods of time where perhaps they forget the disease and think about other things.
Ultimately, they spend their waking hours preoccupied with the fight to survive. It's awful to watch, I'm sorry there's not much I could offer beyond suggesting activities and perhaps Parkinsons groups as you mentioned.
Whats the living situation house wise? is it an apartment? multi-levls?
Whats the living situation house wise? is it an apartment? multi-levls?
thanks to you and Jon for the feedback.
Whats the living situation house wise? is it an apartment? multi-levls?
I often hear people gripe about BBI. This post shows how helpful the community really is.
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and as an Occupational Therapist I see the affects of it a lot. Definitely get involved with support groups it is a big help. Also really keep an eye out for safety as her walking gait will definitely deteriorate. Throw/space rugs are really not good as they can slide and be a slip and fall hazard. Emotionally it can be tough on the patient and the caregivers. Speech therapy was a big help especially if its getting tougher for her to talk and chew. Just realize its going to take more time for her to move in terms of planning things out. I had big problems with my step father crummbling to the floor a lot and he not being able to get up.
Whats the living situation house wise? is it an apartment? multi-levls?
I often hear people gripe about BBI. This post shows how helpful the community really is.
Agreed. I am sorry for your mother and everyone else in your family Les. Prayers to everyone. God bless.
She was very unsteady on her feet and would shake uncontrollably when she sat still. We basically had to remove all sharp objects and edges from her house and we put a few cushions around certain areas.
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and as an Occupational Therapist I see the affects of it a lot. Definitely get involved with support groups it is a big help. Also really keep an eye out for safety as her walking gait will definitely deteriorate. Throw/space rugs are really not good as they can slide and be a slip and fall hazard. Emotionally it can be tough on the patient and the caregivers. Speech therapy was a big help especially if its getting tougher for her to talk and chew. Just realize its going to take more time for her to move in terms of planning things out. I had big problems with my step father crummbling to the floor a lot and he not being able to get up.
Whats the living situation house wise? is it an apartment? multi-levls?
multi-level house. good point on the area rugs, they have a couple. she had a fall while going down the stairs at a theatre a year ago and her gait has definitely deteriorated so it's a risk. between her gait, fatigue and new meds that are causing her to frequently urinate, she doesn't want to go outside of her comfort zone.
thanks to you and Jon for the feedback.
Yea depending on how bad her situation gets a multi-level place will be a real problem as you've already seen with the steps. The tricky thing with Parkinson's patients is that though they have difficulty with walking, a walker doesn't work out well a lot because of the coordination it takes to manipulate one. A good PT will be really helpful.
If your mom is experiencing hallucinations, ask her neurologist about Lewy Body Syndrome. It mimics Parkinson’s in many ways, but its psychotic effects are much more pronounced. I would also look into CBD, as it appears to have positive effects on Park/LBS patients.
I wish I could tell you it will be easy, but it won’t. The last 18 months of his life were extremely difficult and taxing. Best of luck.
Also mentioned is fool proofing your home. This includes putting protections over stove knobs to ensure that the patient doesn't accidentally get burned. This is critical if the patient did significant cooking previously.
Finally see a true parkinsons specialist.For example I live in Florida but take my wife to Mercer Medical Hospital in Atlanta several times a year. The advances they're making with clinical trials and brain massage techniques are amazing. Unfortunately, most primary care and local neurologists will not be as familiar with them as true Parkinson specialist facilities.
Hope this helps and good luck
Daily exercise and movement are critically important, as is having a good movement disorder specialist.
Life really kicks you in the ass sometimes, having a loved one with a degenerative disease is a real ass kicker-
To be able to share the difficulties with a friend or support group can help.
Best of luck to you.
CBD may be a viable option soon since Canada's legalization of recreational cannabis is now set for October 17th.
Section 331 - thanks for sharing about your Dad and I'm sorry for your loss. sounds like the end was particularly hard.
DoctorT - 52 is super young for Parkinson's... glad to hear she is focusing on movement and exercise and hopefully that will slow progression as well as boost her mood.
I can see if I can find out what that medication is.
I can see if I can find out what that medication is.
We would come home to visit (all her kids live in different states) and find her with new bruises and so on. We also found she'd downplay her doctor's visits and what they said.
The following seemed helpful:
1) Going with her to doctor's visits, gave a chance to give the real scoop to the doctor and hear what they actually said as opposed to my mom's BS version. I was the one who told my mom's doctor that she was still driving and the doctor immediately talked her out of it
2) Her long-term care insurance has been very helpful at paying for help. Not sure if your folks have it, but it's very useful if they do.
3) Get in touch with a social worker for her county, find out what the resources are. My mom ended up on Hospice and even though she's on it longer than normal (it's a long glide slope of degeneration for her), it's been VERY helpful. Docs come to the house, they pay for a lot of things, etc. But they also know the groups, and other things that might help.
4) There are -- if resources allow -- home nursing agencies like Home Instead, or others. They can do a lot of the care for both your parents, potentially. Quick note on using them - you have to manage them, and that can be a PIA, too. My advice is if a caregiver isn't working out, nip it in the bud fast, it won't get better.
5) There are also things like "respite care," which is just a place they go for a short term where they are attended to, but giving home care people (kids, wives, etc.) a break from the care for a while.
6) Of course, there are residential living places. My mom did not (and does not) want to go there.
7) It may help to go to support groups or conferences yourself. My sister went to a conference and found it helpful as far as learning more about what this particular disease - progressive supra nuclear palsy - does. She learned more about the personality changes to expect.
8) CVS (among other pharmacies) will do something called "mutlipacks" of medicine. They put multiple pills into a packet marked with the date and time to take it. They come on a big roll for the month and the caregivers just need to pull the AM pack and they have all the meds right there. This way, you don't have to manage all the meds individually which gets hard and requires a nurse (most caregivers can't touch medicines as far as distributing them into pill boxes or whatever, they can only give the pre-set doses out). These pill packs have made our lives MUCH easier.
It costs nothing and you only have to talk to them 1x per month to tell them about any changes.
+++ Great post. If you can get her to go to therapy, the LSVT BIG (PT) and LOUD (SPEECH) can make a big difference but it takes work. I would look for a therapy place that Has LSVT or PWR trained therapists and ideally has an aftercare program. It is also becoming more popular with homecare therapists. Home mods are very important. Besides the home mods, the CDC has a lot of information on fall prevention that can be helpful it is part of their Steadi program.
Just got home from vacationing with my Father-in-Law who has battled the disease for about 12 years. He's 76 now and is starting to show signs of dementia. Physically, he is doing well. Very few tremors, but when sitting, he continually rotates his feet, even while sleeping. He now walks with a cane and will likely need a walker soon. The meds are working well for him, but it is a constant cycle. He's taking pills probably 5 times a day. My Mother-in-law gets the meds ready every morning, and then he carries them throughout the day.
As a caregiver, she's there to do that kind of thing. Get the meds ready. Help him stay active. Keep him mentally sharp by doing puzzles and things like that. My wife and I live 2 miles away and the other kids are within 30 minutes, so we help out frequently.
Not everyone can do it, but we make sure he's active as much as possible. He takes a boxing class meant for Parkinson's sufferers. We take him out walking a few times a week. He insists out getting up from the chair or couch by himself so we let him.
Stages of Parkinson's can have drastically different symptoms. If he progresses to a next stage, the discussions will have to be made on whether to put him in an assisted care facility.
Sorry for your situation
Obviously a persons age and general physical shape has a bearing one how active one can be but all relatively speaking I get the impression inactivity should be avoided or it will progress faster.
Les, I'm sorry to read about you mom. If you can try and convince her to do more than just sit and watch television she may feel better in the long run. At least a daily walk would probably help a little. And maybe a hobby that involved some movement.