New to forum


Moderators: Moderator, phpBB2 - Administrators

New to forum

Postby Brutus22 » Tue Jun 28, 2016 1:04 pm

Hi everyone,
My name is Terry and this is my first time writing in the forum. I have read alot of your posts and am having alot of the same problems with my husband Mick. We are in our 6th year of PSP and I quit work 2 years ago to take care of him. He is 62. I wondered if anyone can help with his realization of his disease. He has not driven for 3 years and wants to renew his license. When I told him he could not have one he says - when I get cured I will be able to drive. He will not read anything about his disease and never asks questions about it. He gets very quiet when I try to discuss things with him and sometimes won't even answer me. I do not want him to give up hope but at the same time we have to be realistic. Does anyone have any suggestions?
Brutus22
 
Posts: 43
Joined: Sun Mar 13, 2016 8:29 pm

Re: New to forum

Postby grandmakcat » Tue Jun 28, 2016 9:15 pm

Welcome to the forum Terry. I'm sorry you have to be here but you will find so much good information and support to help with caring for your husband. Our experience sounds very similar except my husband is 64. I too left work 2 years ago to care for him and he's been out of work and hasn't driven since May of 2013. (We think his first symptoms were around 2011 or so but he wasn't diagnosed until 2014 with PSP). It has only been very recent that my husband has come to terms with the reality of his disease when Hospice had to be called in. Just before that we met with a team at the VA Palliative Care and they were wonderful in helping my husband understand what was happening and what was going to happen. They helped us prepare and set in place directives and to have a conversation about our wishes. I think it's been easier for someone else to talk to my husband and start the conversation about the limits of his abilities and whats to come, and then we have been able to talk. It's been hard and heartbreaking but necessary. He will still think of something he wants to do that is no longer possible and I just try and steer the conversation to something else unless he persists. Then all I can do is as kindly as possible remind him that it is no longer safe for him and suggest something else. I so know what you are going through and you aren't alone. I would suggest that either a healthcare provider he trusts or counselor etc. help you help him prepare - and help you as well. This is a very hard road and my heart goes out to you both.
Ronnie
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
grandmakcat
 
Posts: 111
Joined: Mon Sep 08, 2014 2:56 pm

Re: New to forum

Postby zymurgy » Tue Jun 28, 2016 10:14 pm

My husband decided to take the test. Passed. Still doesn't drive since he is aware of the challenges. I would support your hubby. He takes the test, passes. great. He still doesn't drive. If he doesn't pass, then a different challenge is ahead. I have to believe in hope of a cure.
zymurgy
 
Posts: 99
Joined: Wed Jun 19, 2013 11:56 am
Location: Northridge, CA

Re: New to forum

Postby myownwoman » Wed Jun 29, 2016 12:20 am

Welcome to both of you to this Forum. I do hope we can help you make it thru' this terrible disease.

Phil wouldn't accept that he couldn't drive... until he drove up the drive with the right wheels on the grass and the left on the pavement and didn't know it! Seeing a quarter-mile-long rut in the wet soil convinced him that he was done. When the renewal came he still wanted his license... until I told him how much it was going to cost, and that he could get a CA ID card for free. Ever mindful of money, he chose the FREE ID instead.

As to him understanding what's happening: After the nurses and doctors would shut themselves up with me for the "talk" I would ask him if he wanted to know what they said. He always indicated 'yes'. It was like him to want the truth. I agree with Ronnie that having a professional talk to him might help.... IF that's what he wants. Some people don't really want to know the prognosis - or the progress getting to the end.
myownwoman
 
Posts: 199
Joined: Mon Jan 27, 2014 3:13 pm

Re: New to forum

Postby HelpingDad » Wed Jun 29, 2016 12:23 am

My dad gave up driving per my request, think I ticked him off at the time but I didn't feel like it was safe. Since he went from slow walking to wheelchair in about 16 months it's not even an issue now.

I've explained what he is going through and what may possibly happen when he asks, which is about every other month.

Ron
HelpingDad
 
Posts: 111
Joined: Sun Jan 24, 2016 11:31 pm

Re: New to forum

Postby Brutus22 » Wed Jun 29, 2016 7:19 am

Thank you all for your help. Mick did not pass his test in 2013 so it is not an option for him to try again. Ronnie I would like to know when you knew it was time for Hospice. I have had some people suggest that to me but I can still get him into the shower and toilet. I do find it difficult to ask for help. My family always offers to help and I feel like it is my respondsibility and not theirs. Lately I have trouble keeping in touch with everyone because I am the barer of always bad news. Does anyone relate to that?
Brutus22
 
Posts: 43
Joined: Sun Mar 13, 2016 8:29 pm

Re: New to forum

Postby myownwoman » Wed Jun 29, 2016 12:53 pm

Terry: You need to accept others help whether it be professional or family; just make sure they know what they are doing and won't harm either themselves or Mick.

Think of this way: you also give to others when you let them help - they are the better for it. My son was the only one who was able to lift Phil, but others sat with him, talked, laughed and gave him sips of water. Others can also give you a breather by allowing you to go 'shopping' for a bit - or even out to a short lunch with a friend. One of the biggest personal helps that friends gave me was to sit with me and play a game or two - and talk. Sometimes we would take our game into Phil's room so he could hear the talk. I am blessed with a few very good friends who didn't take-off when Phil got bad. They were there for me any time I needed them.

As to what to say: For a long time I answered with the expected response of "we're OK". But, as Phil got bad I decided heck with that! If anyone was unwise enough to ask, I would say, "not good"; and if they asked for more I would briefly say that his abilities had declined more. Few wanted to know more. I realized that one day Phil's obit would be in the paper and others would say, "what happened? I didn't know he was that bad." If you try to keep the rest of your meeting upbeat and not be a sad-sack the asker won't take-off so quickly.
myownwoman
 
Posts: 199
Joined: Mon Jan 27, 2014 3:13 pm

Re: New to forum

Postby Robin » Wed Jun 29, 2016 12:57 pm

Terry,
This is my own personal opinion - let people live in their state of denial unless it's a safety issue. My own opinion - family and friends will have to make adjustments but they don't need to life in the same state of denial.
Robin
Robin
 
Posts: 3843
Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

Re: New to forum

Postby Kandis » Sun Nov 06, 2016 8:11 am

My husband didn't want to know how this was going to pan out. He said he would prefer to live in the day and take things as they come. I have tried talking to him about things every once in a while, but have stopped as he got very emotional last time. Thoughts are getting harder for him, so I think I will just let him live in the moment and not struggle so much emotionally.
Kandis
 
Posts: 31
Joined: Fri Feb 12, 2016 12:00 pm


Return to General PSP Discussion

Who is online

Users browsing this forum: No registered users and 4 guests