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By Rolow On 2016.01.22 04:58
Hello all. Sorry for the following rant but I feel like I need to get all of these things off my chest. I apologize in advance if I seem all over the place because I feel a tiny bit mentally unstable with all the on-goings occurring as of late. First some background.

I live in New York just above New York City with my mother, 65, and my father, 70. My father was diagnosed with PD, I believe, at the age of 52. Things declined fairly slowly for a while. At around age 65 he began to use a walker for mobility. At age 68 he had a fall over the railing of our stairs to the second floor in our home and completely severed the arm bone just below the shoulder, resulting in surgery, a stroke, hospitalization and a short term rehab clinic stay to not only help improve his arm movement but his mobility from the PD as well.

This past November, his condition rapidly declined. For about 2 weeks he became nigh immobile and was more or less confined to his bed. On top of that, his right hand, although he can still feel, essentially became paralyzed and he is unable to move his fingers or grip anything(doctors aren't sure if it was from a stroke or not). After another hospitalization and stay at the rehab home again, we were "forced" to take him home from the clinic because after X amount of days, the stupidness that is Medicare won't pay for coverage anymore and the cost of keeping him there would have drained the family funds dry quick. He has been home now for almost 3 weeks.

His symptoms and problems are as follows:
-Depression.
-Off and on generic pain.
-Somewhat difficulty swallowing.
-Near complete loss of appetite for both food and drink for nearly 2 months now causing him to lose an extreme amount of weight.
-Immobile, nearly confined to bed.
-Almost near constant nausea.
-Dementia(hallucinations, trouble communicating, trouble thinking, etc.)
-Quiet, almost whisper-esque speech that can be slurred, garbled, and very difficult to comprehend.
-"Paralyzed" right hand(his dominant)
-Incontinence

My father's health also affects my own. On top of the overall cruddy feeling, I have practically developed insomnia and when I actually manage to fall asleep and wake up, I don't have the energy or drive to get out of bed.

He needs 24 hour a day care and monitoring but his medical insurance only covers it sporadically(about 3 days a week for 2 hours tops each day) and only for a period of about a month until it is completely cut off. His insurance will not cover any hospice or long term nursing home or care center and we cannot afford it on our own.

So that being said, practically all of his care for everything falls on my mother and I's shoulders. We try to get in home health aides but the cost for them in our area is staggering and we cannot afford so much of it so often. I have to do all the "heavy lifting" of my dad as he is more or less at this point "dead weight". My mother, only being 5'3" and weighing a bit over 105 pounds cannot move him or do anything that could be considered strenuous.

Me and my mother live in constant stress and hardship. It seems as if a black cloud is hovering over our house and we're being tormented everyday. Sometimes I feel incredibly sad, while others I feel extremely angry at the situation we have to deal with. Sometimes I feel as if it would be better off for not only myself and my mother, but also my father if he would peacefully leave us.

In the next few months I hopefully will be starting a new career, and while not extremely far away from where I live now would require a move closer by for convenience and I fear for not only the safety and care of my father, but the well being of my mother, who I cannot see being able to face the burden of my father's care alone.

I am at a loss. I cannot see myself, or my mother for that reason, being able to retain our sanity for much longer at this rate. Everything is just so hard and difficult. We are unsure of what to do. Should I just suck it up and try and move forward? Am I being selfish? Am I doomed to be miserable for years to come? How long does my father have left? All these questions constantly swirl around in my head. I am so confused and at a loss.

Does anyone have any advice, tips or comments? If I left any information out please ask. Thank you to whomever took the time to read my ramblings.

By VioletV On 2016.01.22 15:30
Hell Rolow,
First, I just want to commiserate on the incredibly difficult situation all of you find yourselves facing.

I'm not able to spend a lot of time writing at the moment, but suggest that you check in with your local agency on aging. If your father is a veteran, there MAY be some resources available through the VA. Are the family's resources protected so that Medicaid can begin to cover some of the expenses? It sounds so very difficult. If you are part of a faith community perhaps there is a chaplain, clergy person who could coordinate some volunteer people to offer your mom respite care. Can Medicare provide home health/OT/PT for your Mom or dad? That may help with some aids to make lifting him possible without injury to you or her.

I am sure others here may be able to suggest other strategies/resources.

Come back, ask for help here, or just plain support, or just rant. It's a rotten disease and we have a fractured health care systems to address it, so we have to give each other whatever support, caring, emotional space to vent that we can.

Best to you,

VV

By Rolow On 2016.01.23 00:26
He isn't a military veteran. He is a former NYPD officer and worker for the New York State unified court system. We've checked with our local community outreach program for the disabled/handicapped and they don't have many resources other than wheelchairs, of which we already have. Medicare will only give fully covered therapist support for a little over a month after discharge from a hospital or rehabilitation facility and then the entire cost is on you. The only way we could get more care paid for by insurance is if we paid more of a deductible into his supplemental insurance to cover more than the measly 20% they cover now. It took all this time for me to really open my eyes to how ridiculous the healthcare system is in this country forcing you to have Medicare as a primary that covers little.

A skilled long term nursing home is what I think he really needs but I know he would be even more so depressed and sad being away from home. It's either he's in a nursing facility and me and my mother are less burdened but he's in deeper depression, or he's at home and not as depressed but me and my mother are stressed out. It's a lose lose situation.

By dans316 On 2016.01.23 08:44
Have you ever checked into Hospice Pallative Care program. Medicare covered my wife's final care, but I never did get her into the pallative care program and now wonder if Medicare would have covered that?

By Mary556 On 2016.01.25 01:27
Rolow, I've been thinking a lot about you and your parents the last couple of days since reading your message here. Hoping and praying that there will be an answer for your family soon. You are not being selfish. You and your mother are in a very difficult situation. How could anyone not feel depressed, angry, lost and confused when faced with all of these challenges. My heart aches for your father, for all the suffering he is experiencing.

This idea is a long-shot and perhaps naive: have you contacted the police department where your father worked to ask if there are any social services for former police officers? I'm wondering if they would know of any newly-retired NYPD officer who might be available part-time to assist with care of your Dad. A policeman is someone who always has a heart for helping others. There is a brotherhood. Knowing of your financial situation, maybe another former police officer would give your father a break on fees? If someone could come for an hour or two in the morning and someone else in the evening? along with other services, maybe that would help to keep your father at home?

Recently We had a live-in home health aide for my PWP when she started to get weaker; my mother needed someone to lift her occasionally and I was not strong enough. We thought that might last for several months or a year, but it was only four weeks before my Mom passed away.
I found an agency through this site: https://www.care.com/home-care
There are also listings for individuals in your area who are self-employed. But if you hire someone privately you need to consider insurance and liability issues.

It is a gamble when planning for long-term health care. Do you spend money on high premiums and perhaps not need to use the insurance, or do you save those funds for the rainy day. My parents chose to self-pay.

It might be a good idea for your mother to talk with an attorney who specializes in elder-care issues. If your parents own a home together, I believe your mother would keep that asset even if all of your father's funds were to be spent on medical bills.

Sometimes high school students do service projects to help others in their community. Maybe some would visit to wash dishes, shovel snow, run an errand or something to help to take some of the burden off of your mother and yourself.

It is a very difficult situation you are in. You need to try to take good care of yourself as well so that you do not get run down or burnt out. You want to do what is best for your Dad and to take good care of him as much as you can, but no caregiver is super-human.
Best wishes and prayers for your Dad and for your family.

By Mary556 On 2016.01.25 01:42
I like Dan's idea.
Maybe Medicare would paY?

https://getpalliativecare.org/whatis/faq/#will-my-insurance-cover-palliative-care

4. Will my insurance cover palliative care?
"Most insurance plans cover all or part of the palliative care treatment you receive, just as with other hospital and medical services. This is also true of Medicare and Medicaid. If costs concern you, a social worker or financial consultant from the palliative care team can help you with payment options."

Me Ke Aloha

By Rolow On 2016.01.25 04:32
Thanks for all the recommendations. We are looking into a bunch of things now.

By moonswife On 2016.01.30 06:58
Just wanted to tell you everyone that read your post is sitting in front of their computer thinking about you tonight. We all wish the best for you and will start asking just exactly who might be a possible resource. A hug to you and your mother

By brainstorm On 2016.02.07 22:33
Rolow,

I read your note and it brought back a lot of memories from almost three years ago when I was single handedly taking care of my Mum and going through the same frustrations, feelings of helplessness, anger, etc. You are not alone. You need practical help with lifting your Dad with the transfers. Believe me when I say it will ruin your back and that is the only backbone you have. I have already ruined mine from lifting my mother several times a day for almost 15 years. Please get a hoyer lift, Medicare may pay for it, but you will not get a choice of which one, they only pay for one type. You will need a precription from your Dad's doctor to get it paid by Medicare. Even turning someone in bed that is dead weight is hard on the back, so make sure your have something like a washable underpad for sliding and turning over so that you have to do less physical work. I used to use a piece of satin cloth to slide my mother in bed, or even a smooth twin bedsheet will do the trick.

There may be a long term care program offered through MEDICAID in NY state if you are able to get your Dad into the Medicaid program. The LTC program may provide a Home health aide to come in to help for so many hours a day to help your father with his ADLs. Even if he does NOT qualify for the full Medicaid program, they may cover him for the LTC program. See link ... https://www.health.ny.gov/health_care/medicaid/program/longterm/lthhc.htm ...

Of course Hospice care may also be warranted at this stage by the looks of his symptoms.

So those are two outlets to consider. But depending on logistics of your home, etc. the hoyer lift is an immediate need to relieve you from some of the physical aspects of caregiving.

If you decide to move away, I doubt your mother will be able to handle the care on her own based on what you have written. I am just being candid. Unless the void you leave is filled, your Dad may not be able to get appropriate care. It is a heavy burden on you and I know you are constantly thinking about the what ifs. And at the same time you just want to run away.

It is an insidious and diabolical disease that affects not only the patient but also the caregivers. Unfortunately nobody takes into consideration the caregiver's needs. Even his doctors may not take you and your Mum into consideration. But at least you and your Mum have each other to share some of the "lighter" responsibilities.

I understand where you are coming from with the insomnia. Even though my Mum passed away 2.5 years ago, my body still cannot go to sleep normally. I was so used to being up practically all night but for 3-4 hours and all day that I still cannot sleep naturally. IF nothing works, and you have some financial resources, I would try an get a night aide for say three days a week, every other day so you can get some rest.

I will keep you in my prayers and hope for the best for you all.

By brainstorm On 2016.02.07 22:43
I also forgot to ask if he has had recent blood work since he started going downhill in November? Sometimes metabolic disturbances in the body can really impact the Parkinson's symptoms. My mother had borderline to high levels of calcium which was enough to throw her PD symptoms into a critical situation but she was also much older at 91. So it is something to consider regardless in the case of PD symptoms.


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