We in the USA seem to pay everything out of pocket. I have a very fine health insurance policy through the teachers union (at least I thought it was very good). Seems there is a fine line between Health Care at Home and Custodial Care at Home. At this point, my husband needs someone there to oversee his moves because of such a high fall risk and poor judgement. Yesterday afternoon I came home to find him with a split open elbow which needed stitches. Mind you, this happened at 9:30 a.m. and I was home for lunch and he didn't mention it until I saw the wound at 6 p.m. Should I be looking for non profit organizations that may have services that aren't too expensive. I have to work and time is telling that he shouldn't be left alone. Health Care at Home is covered in full but nothing is covered under the Custodial Care. Has anyone been able to work around any of this? Many thanks again for everyone's comments in the past. Joan
Help in the USA: We in the USA seem to pay... - PSP Association
Help in the USA
Joan , I am a fellow teacher (sped k-12 ; elementary, 1-6) here in the US. My method to deal with what you are going through? I just up and quit. Not recommended the way to go.. but I was at my wits end....not because of my husband, but because of my school.....I told a friend in the class next to me, "I go to school and it's hell , I come home and it's hell"..... Infact, one of the deciding factors was when I came home from school and we went shopping. I grabbed the basket he was holding and it was sticky , I looked at my hands to see what child's melted candy was all over the handle....and it was blood.... B had slammed the bathroom door on his thumb taking the tip almost all the way off.....that happened in the morning We didn't get to the hospital til 10 hours later(?) He didn't complain once about the pain!
However, I am now in need of a job but I do not want to teach right now.....and though my school insurance was good for me, I could not put my husband nor my family on it...just too expensive .....
So my advice to you , is look at what your husband did for a living and base needs off his income....now I don't really know how all that goes (my son got my husband on medicare) But the Area Agency on Aging can assist you in getting a better understanding of medicaid or medicare ....If he has a neurologist, ask him to refer an agency to help you...There are alot of agencies who do caregiving...simple housework and making sure your loved one is safe and comfortable.
I mostly fended for ourselves...the minimal drugs and dr visits were covered...this proved very useful as B slipped deeper into the grips of PSP.....call that agency.
Another entity you can call on is God Himself. He will help you get through all of this , Joan. If you are a praying person , then you know to pray daily for the strength and comfort that your husband but also that YOU will need while you and he go through this together. Joan, if I have shared my faith with you before .... ...well I gots more faith than memory and even my faith slips sometimes...(I hope I haven't offended you either) but let me leave you with verses from the Bible that got me through ...that get me through ....and good luck and Godspeed as you go through this horrid disease. And please know that we are always 'hear' for you to lean on.....
Sincerely and with many hugs...
AVB
Cast thy burden upon the Lord, and he shall sustain thee: he shall never suffer the righteousness to be moved. Psalm 55:22
...do not fear, for I am with you,
do not be afraid, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my victorious right hand. Isaiah 41:10
So do not worry about tomorrow, for tomorrow will bring worries of its own. Today’s trouble is enough for today. Matthew 6:34
My son died May 4, 2017, at the age of 55. He and I live in Los Angeles, Calif, USA. I gave/give thanks each day to President Obama for the ACA. My son's day job was with LAUSD as a secondary math teacher. He was required to stop working after 11 years with LAUSD, and put on Disability Retirement. With that, his health insurance ended. He would have needed over 20 years of active work service to have had the continuation of health coverage paid for .
Now, he had a deadly pre-exisitng health disorder and NO health insurance. Thro ACA we continued his Kaiser health insurance. My son paid out of pocket, $550 a month, and had a small stipend from ACA. Later Kaiser HOSPICE covered health care at home but no custodial. Together, he and I, paid privately for the home caretaker. He only had 24 hour care from Feb 4 - May 4th. The only insurance that covers home care is Long Term Care Ins (LTC). I have that insurance thro Cal PERS, but my son had none.
There is in the San Fernando Valley (I forget the name) an organization that will take at their facility, neurological disorders. My son needed home care and so we could not use it.
My son, with his Law degree, his UCLA music degree, his full secondary math credential, is a PERFECT EXAMPLE of being a tax payer/good citizen and suddenly faced with a pre-exisitng condition and health insurance being denied thro his work place. After his experience I yearn for the day when within the USA every person is covered with health coverage.
BTW Pres Obama also implement several billions of $$$ for brain research.
Who would have predicted that my son would get this horrible disease, and have his health care stopped??????
He sounds amazing. And with such a brilliant brain, it is a terrible shame. Now that we have this new president, things are only getting worse. take care.
Looking at the people near me tab I am told you are 54 miles away. I'm in Philadelphia. Only thing I would suggest is to be in touch with your neurologist office to see if you have a social worker assigned to your case. I doubt there is any financial support for custodial care but one never knows. You may get some sort of information.
Really, a social worker assigned to my case☀️That would help. Our doc is Dr. Golbe who is very involved in cure psp. He's been researching this disease for 38 years. But I actually spoke to him yesterday and all I can say is , I felt flat and even worse when I hung up. Not much reaction to all I said.
The last visit to Larry's neurologist was a waste of time. He seemed detached. Said there was no change. There was. His therapists mentioned the change. I don't think doctors like to be so very useless.
I suppose.
I felt worse after the last neuro visit - I wish she would have had the decency to pretend she cared. We all do it - tell everyone their grandchild looks just like them - "You aren't old enough to be a grandmother" and on and on - lie to us, we're vulnerable - we would have bought it!!!! We never had the old- fashioned family Dr. We were health, busy, went to work everyday, took care of others, and now you can't even pretend to care for a minute or two???? bummer. I mentioned a social worker and she laughed. I didn't laugh. I was P.O.ed
Thank you for validating my feelings. I felt like slapping that little guys face if I was in person. Lol
GP's almost seem to know how to give a feeling of humanness. But neurologists....they are like the autistic children they are deplete of social skills. I have dealt with Neurologists long before B's illness and my experience precedes all of his visits.... those particular doctors have no social skills ..... I remember in a post here telling my fellow PSP carers, that I would give Klonopin to my neurologist the next time we see him so he doesn't tell us "man you've really gone downhill since I last saw you!" B , in his apathy did not care (that I know of) but it hurt the stuffin out of me and pissed me off , indeed.....
Well I'm slipping backward ...but I say this to let you know you are not the only one with a N who had very little Heart...Take no care what they say or do....do what is best for you and your loved one....you know way much more than the DRS,,,,and Especially do not depend on them for emotional support....
Hi Lacey,
Agree with what you said re: Dr Golbe. At first I thought that we just caught him on a bad day, but it seems as if what you experienced is the 'real' Dr Golbe ! It appears that he is focused on pure research . PSP as a very human and devastating affliction appears to be of no particular importance in his world ! Not the Dr I wanted for my sister ! I'd already had my fill of similar encounters involving doctors who had no clue as to how to deal with pts as people who deserve the same respect accorded to him !
In the past we have used an volunteer organization for my elderly mother called the Village to Village Network. vtvnetwork.org/ It is a great organization whose goal is to keep seniors in their home. There are also adult day care centers, though costly. In our area (Los Angeles,CA) home care services are around $20/hour with a 4 hour minimum. You may find a college with students who do this for credit. We have also used one of the medical alert call services. May not help (he has to push the call button) but it gives me peace of mind. Though my husband can walk assisted, around the house he uses a wheel chair to prevent falls. Does wonders for his upper body strength as well. You also can his ask his doctor to meet with a nurse practioner/case manager or social worker. They can give you guidance on what may be available.
Thanks. A lot of good leads. I'm feeling a little more hopeful.
Perhaps we don't realise how lucky we sometimes are here in the UK, even with all the frustrations..🐛
Although I do not work there are two things that have helped me a lot. I have a Nepali man who lives in our house. He pays a nominal rent as we live close to his work place (a restaurant) in exchange for helping around the house and with my husband. He is usually home in the morning and two days a week. If I need him to take a day off so I can go away he just needs a couple of weeks notice. He is able to pick John up when he falls and if I go out to dinner with friends he is happy to cook for 'Dad'.
If you can give a home to a student or refugee in exchange for assistance it may work for you as well as it has for us. A cheerful presence in the house adds much too.
The other thing I have found helpful is having a baby monitor in his room, which has an app on my phone so I can watch him when I am out.
He also has a life-line bracelet but has yet to use it. It gives me peace of mind though.
Good liuck. It is a terrible position for you to be in. How are you supposed to concentrate on your job when worrying about your husband?
Wow that sounds like a good idea Finoni....if we had an extra bath , we would have done the same.....I am still thinking of enlarging the room and making a private entrance to rent it out....I'd never make my money back I'm afraid....
AVB
We had a representative from Hospice stop by today. Our pcp suggested it. I had no idea about all they offer - and all covered by Medicare. We don't need a lot now, but good to have them in place and a relationship for when and as we need it. We will have a nurse visit once a week to begin and it will build as necessary. And volunteers to spend time with him, walk etc. Even respite is covered on occasion. Supposed to only have 6 months of life to go, but with PSP who can tell?
Thank you, Abirke, Amen................
Yes, I agree, we, in the USA, live in a capitalistic society. I understand where the bottom line exists, but isn't it wonderful that the ACA was implemented just prior to when my son would need it? Was that not a miracle? I try to give thanks wherever I can.
I am fortunate to have been born, raised, and residing in California. I do hope that we can pass a SINGLE PAYER HEALTH CARE system here. Massachusetts led the example for ACA and I hope we can be the example for a future national health SINGLE PAYER HEALTH system.
Never in a million years would my son and I have predicted him being stricken with PSP. He watched what he ate, he did his daily walk, he was a kind and compassionate person. PSP brings much anguish but also economic distress.
BTW, I never got past elementary algebra nor can I read a single note of music. I marvel at the talents my son was given. When my dad died in 2010, my son who was very close to his grandfather, in my grieving would tell me that his grandfather would often tell him, "Don't be sad that it's over. Be glad that it happened". My son died at a young age, but I am so grateful that I was his mom.
Thank you, what a beautiful letter, enjoysalud...and in those bad days remember the good ones....I was having a bad day yesterday, but today not so much....
AVB
ps I hope you don't mind, but I am going to delete my politically inflamed post.....that's not what this forum is about...
AVB, we each need to live with ourselves and I respect your decision.
I just finished a thank you letter to Senator John McCain. I outlined my son's story, education, the uninvited guest of PSP and how it tossed him into the PRE-EXISTING HEALTH pool.
We do not ask to be thrown into PSP, nor are we aware with medical research, what if any was our part.
You know much more about the ways of Senator MCcain and the few republicans who choose a better way than the the Cassidy Graham bill.....Maybe there is a better way than Obamacare...but idiotface (Trump) will not find it.....please excuse me to my friends who believe in the present American ...regime. My husband voted for him so there hahah...I'll probably delete this msg tomorrow....dont' want to make anyone mad.....even though thats what I feel.
I do love America and believe we need to allow the rich to be who they are and.....hey, to be encouraged...if one who is struggling financially, and is sick physically, mentally or psychologically, they should have the right to same form of care as anyone else....oh yah and those with preexisting conditions....like your son and my husband.....I must say we were taken care of financially through medicare...thanks to my son who fought that fight....
AVB
Hi AVB, my son was too young for medicare ( D.O.B. March 1962. He died a few weeks after turning 55) because of his fiscal responsibility he was too $$$ for medicaid. I give thanks to the Grace of God that help was given in the way of angels who guided me in filling out forms for CalSTRS disability. That ACA was in place, and the phones were answered by kind and patient people. I give thanks to Pres Obama for the $$$$ given for brain research and that we are slowly moving forward with a more equitable health system. I do NOT resent those who have $$$. As the Bible states it is THE LOVE of money that does us in, not the amount. It has been almost 5 months since my son's death. For me more days are good, but ..........
I do believe that we ALL should have quick access to a universal health care, competent medical care. In the meantime I write letters and try to not waste precious time in anger. I thank you for the comfort and encouragement your words have given me.
Wow good for you enjoysalud, I am so sorry again about your son passing...Tell me what did he die of?
AVB
Hi abirke, on Jan 4, 2017 my son was re-diagnosed with PSP. Prior, Jan 2015 he had been DX with Parkinson's. I will say this, each time when given the PD DX we were told that he had ATYPICAL PD. Dumb me thought that was good...a benevolent PD. How naive is that???
The other, as we can all testify, was that I was so busy with his care, that I never got around to researching the steps to donating his brain for research...CUREPSP.
His California death certificate (May 4, 2017) states PSP. I have two big REGRETS: 1) not donating his brain 2) not hiring more help and forgetting about worrying that there might not be enough money.
Thank you for asking. Yesterday was a sad/happy day. The sermon at church was excellent. I know it was 100% intended for me.
It does not sound like your son was diagnosed very long when he succumbed....It was 4 years almost to the day when my husband died.
Well I am so glad you could glean something from the sermon....it's easy to go and not get anything...I have started trying to get one thing from the sermon and text it to my kids two of whom do not attend church even so far as saying there isn't any God.....I pray daily that their souls are taken care of as they walk into maturity and wisdom.
Do not regret a thing, Es. You did what you could do.....maybe you can donate your brain!.....I know I am going to try....this is my plan, donate all my organs for reuse or research...then let 'em throw me over bridge (after i been recycled and cremated) while they play Neil Youngs Down By the River and Cortez the Killer...ahahahaqha the lyrics have little to do with my reasoning....I just love the guitar solo's ......hahaha... Maybe I'll Fly Away....for that Christian reflection....I loved Georgepa's funeral he gave for his wife...tears and laughter and joy and sadness.....and sunflowers....my favorite...
well Keep the Faith , sister
AVB
AVB, I LOVED your note to me. It made me laugh....out loud!!! Thank you!!!
Yup, my son when they gave him the PD DX Jan of 2015, just kept getting worst, and yet doing everything right. Jan 2017 DX, it all made sense. Don't forget his first symptoms were March, 2014. So three years. I think my son's PSP was wicked. You name the symptom, he eventually got it, except his mind seemed to understand and continue to manage a way to communicate (though his speech was totally unintelligible)
My dad had dystonia of the neck and double vision in his mid-fifties. My son's father (divorced back in 1974) died of FTD as DX by UCLA. He was also well educated, a PhD in Sociology.
Until there is proof, I choose to believe that PSP is genetic. I think my son got it from both sides. How sad is that?
Too bad you don't live closer. You sound like somebody I'd probably pick as friend. I have friends that go back to the 2nd grade. Amazing that at such a young age we shared values that stayed with us.
The terrible thing about care in the states is how variable it is. I live in Massachusetts and had to move my mom down here bc the care in NH was nonexistent. For $10 a month (after "spending down" to qualify for the "frail elder waiver" and MassHealth) she can get up to 24-7 care in the home (as determined by a RN and dependent on her level of need of course). The minimum care, though, is 30 hours! Since I also have two small kids and work, this has been a life-saver! It also comes with cab rides to MD appointments and the lifeline fall alert. I know we are lucky to have this access. The PACE (program of all-inclusive care for the elderly) is also great, but not everywhere (definitely in CA bc started in SF). I also heard there's a "care contract" where carers can be paid, but not sure details (i.e. Can you also work, do you need to qualify for MassHealth, etc). It's cruel that we don't go better keeping people safe and sane in their homes (if they wish).
Corona Virus is in the Nursing Home
Palliative/Hospice Care
Do I need to see things from another perspective?
What to do? 
" No room at the Inn " ! 
