Anyone know about PSP

DiannaR

My DH aphas been diagnosed about three weeks ago with possible progressive Supranuclear Palsy Has anyone heard of it. My research shows it is a terrible disease. Would appreciate any help. Thank you.

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maifleur01

I was just looking because I had not heard of it before. My husband has some form of dementia. The first thing you need to do if you have not already done it is get a real POA. Not just a POA. We waited too long and it has been a nightmare. We thought we had time but a UTI pushed him over the edge quickly. Legally there are so many things that a spouse can not do without the legal POA. I had to become guardian/conservator for my husband but there are still things that I can not do without a court order. Please post again if you do not have the POA and I can give suggestions on how the process is done, things to protect you from becoming destitute, and where to look for the information.

Other than that the main things are to take care of yourself, try to get enough exercise to release your stress, try to find a group where you can actually talk about the frustrations of care as there will be many. When I first joined an Alzheimers group no one was talking about problems that many were facing. I was in the group for about 9 months before anyone spoke of actual problems beyond spilling food.

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maifleur01

I thought about this today. One of the things you need to ask each other is how much personal care can you give and how much he will be willing to receive. I had no problem cleaning DH when he had the stomach flu and before he went to the NH but another woman drew the line at even thinking of it. After my dad had a stroke he had to go to a nursing home for 24 hour care. However he would not have allowed me to bath him or do the other things necessary. A nurse was fine but he had a scar on his leg that he did not want a non-professional to see. When he becomes bedridden will you have the physical strength to turn him so that he will be comfortable and not develop bedsores. Be very strong because you are just starting a rocky road but be weak enough to vent when needed. Without venting you will bottle the anger about every thing and your body will suffer. Be will to talk about what the two of you are going through to others as they can provide solutions that you had not thought of.

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DiannaR

I am in the process of getting a POA for both financial matters and health matters. They should be finalized this week. I will not have the physical strength to take of my DH by myself. I will find help. I am also going to begin looking for a different, all one floor home and easily accessible for a wheelchair when it wii be needed. My husband is still in the denial stage that if he fights it, he can win. Boy, how I wish that were true....... I don't see many homes right now that would be suitable, so maybe in a couple months when spring arrives.

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DiannaR

Also, has anyone used anti depressants.?. I have ab appt with my doctor on 1/4/17. I'll see what she says,

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maifleur01

I used to have SAD a form of depression. They might help.

Beyond a one floor home look for extra wide doors. Bathrooms that are large enough to move a wheelchair around in. Especially to access the stool. Big mistake we made in this house. If not a second bedroom at least an area that you can sleep in if/when you need assistance so the aides can help your husband while you get some much needed rest.

Make yourself familiar with the Medicaid rules for both your state and federal. Knowing what is out there can help with making your decisions even if you think you may not need it. When the time comes and you can not care for him at home the nursing homes(NH) which were better all had some Medicaid beds. The worst ones were either no or all Medicaid. Check with your insurance company to see which nursing homes have doctors that are accepted by them. Most nursing homes have a on staff doctor(s) which may be included in the cost. Medicare and your insurance company may not allow for the use of doctors outside of the home without a referral. Start looking at what is available way before you think you will need it.

Talk to the attorney about the POA. You will need one that covers everything not just separate for financial and other one for medical as there will be things that do not fall in either one of those groups. Make wills for both of you. Some attorneys want everything to be put in a trust supposedly to protect the spouse and assets. You need to decide a couple of things before you do this because it is expensive. If you would need Medicaid within the first five years of establishing the trust it would no longer be valid. Are you saving the assets for you or any heirs? Certain assets are currently exempt from being used for Medicaid which is why you need to know the part about spousal impoverishment laws before you see the attorney.

Lots to think about and I know that there are others on here that have followed the same path for one health reason or another. I am hoping others can give you better information than I have attempted.

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CA Kate z9

Dianne, I cannot begin to tell you how sad I feel for you and you husband and the road you will travel between now and the inevitable.

My husband died of PSP almost two years ago.

Below is a forum that you need to attend. You can read as an outsider, but if you wish to post to comment or ask questions you will have to apply to belong... nothing onerous:

http://forum.curepsp.org/viewforum.php?f=1

This forum is directed at PSP and it's related diseases.


I cannot argue with the advice already given by the others on this forum. You didn't say how old your husband is, but if old enough for Medicare you are in luck.

We each had/have long-term care policy that was a blessing and allowed me to hire in-home care so DH could stay here. If you don't have help at night you'll get no sleep.... and you need to take care of yourself!


Last shot..... advisors are correct in saying that pneumonia is your husband's best friend... an Angel of Mercy. Don't be too quick to not take advantage of an early, easy death.


Do make every effort to get all those legals mentioned above done quickly; and old ones may need to be redone. I don't remember anyone mentioning a Holst Form. A Holst Form is filled out and then signed by your doctor... and possibly your husband, saying that no advanced medical care can be done to save his life. This is posted on the refrigerator - or the wall near his bed if he's bedridden. As hard as this decision may be, it is the best one.


If you wish you may contact me directly thru this forum.


A thought for you: "The only thing that's changed is everything."


I'll pray for strength for you. Kate


PS: I don't know if you meant the depression medicine for you or your husband, but be warned that PSP patients DO NOT stand medications well, so be watchful what prescriptions he's given. The PSP Forum will tell you more.

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maifleur01

That should be Molst form. Several states use that particular form but there are similar ones depending on your state. Mine does not. Mine just calls it a living will. The NY form: https://www.health.ny.gov/forms/doh-5003.pdf

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CA Kate z9

Oops! In California it's a Polst Form. And it is much easier for the Paramedics to see than a Living Will. It is one pink page that you hang in very visible sight. Our paramedics look for it when they answer a call.

Note: My Living Will is 6 pages long.

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maifleur01

One thing that everyone should know if they have a living will that states do not resuscitate is that paramedics here are not bound by that portion. When in group two women found this out. By law they must do everything possible to save a person's life. Only when that person is in the hospital can the DNR request be honored. One of the women when she told us about this, said that for most not to call would be impossible but knowing what her husband and our loved ones were facing not to call as it was kinder.

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maifleur01

Found out Saturday that the nursing home my husband is in does not honor the DNR portion of my husband's living will. They just told me that they must have their own form countersigned by the doctor approving it. Nothing was mentioned when I gave them a copy a year ago. If anyone has a loved one in a nursing home please check with them about if they honor it. From my "discussion" apparently even a straight DNR would not have been accepted.

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