I am so frustrating with D's lack of memory. I asked him to do something yesterday evening, he walked out of the room I thought to do it but.... I could just cry. I am miserable.
FRUSTRATION: I am so frustrating with D's... - PSP Association
FRUSTRATION
Written by
Auddonz
To view profiles and participate in discussions please or .
46 Replies
•
So sorry, Audrey. This horrid disease is taking its toll on all of us. I don't even bother asking D to do anything anymore. It is just not worth the resulting headache. I'll tell him he needs to put a pad on and sometimes he does and sometimes he doesn't. So far I have been lucky. It only happened once on his recliner when he had refused to do the pad. I bought waterproof sheets, smaller ones, to keep on top of it now. The rest of the time it happens in the bathroom. My name should be changed to Mrs. Spray and Mop. 
Can you just imagine what I will be coming home to when I have to go back to work in August?
With the dementia D has, we will probably never be able to provide the VA with info they can't find to get him covered. I can't press him for information anymore because he is getting too upset. I feel too sorry for him and don't want him to be any more upset than he already is.
I hope your day goes a little better.
Jeannie
easterncedar• in reply to
I know what you're saying!! My day before I go to work generally starts with a change of pajamas for him (And he's pretty unwieldy, even when he is awake), a change of bedding if he missed the pad, a load of laundry or two, and a mop of the bathroom floor, at least. I set out his breakfast and his pills. And then there's the cat, who is ancient and needs a bit of cleaning up after as well. The office is a respite, really, much as I worry about him. What do you do for work?
I was talking just this minute to a coworker whose wife works for the VA. He says there really ought to be someone at the VA - a social worker? - who can help you get the information you need, help you with the forms. Maybe where you are they are so understaffed that they aren't capable of engaging you as quickly as they have me, but it ought not to be impossible for you to be helped.
• in reply toeasterncedar
I work in the library at our school. I'm the library aide which means I do most everything because the librarian is now also the technology person in our building. Therefore, she has no time or real interest in the library. Rather sad in my opinion. So I shelf, check in, check out, mend, run reports, keep students in check, etc. I do love it but I am worried about going back. He's in the middle of a much worse walking week. I'm just praying we can hang on till next May.
I will be up very early also. Making breakfast, portioning his pills, fixing his lunch. Although I think I will make his lunch the night before when I do mine. If I can get him to just have a sandwich instead of trying to heat things up in the over or microwave!
I am mopping bathroom every time he goes just about. So that room should be just heavenly by the time I get home.
As far as VA goes, this was a VSO officer. She faxed for info from DC and St. Louis and the Missouri Adj. General. The Missouri one came back the same, no record of Vietnam. We are waiting for the others but I am not counting on that at all anymore. She said unless we have some proof, she can't help us. I searched online and it appears this has happened to a lot of people.
So we are in a holding pattern right now. And my poor husband is so upset. I'm just trying to keep him calm at this point.
Auddonz• in reply to
jmhk, Oh phoo, i anything ever went right I would personally faint. When you go back to work who will take care of him?
Audrey
• in reply toAuddonz
Well so far no one. He manages to stumble around the house. Holding onto things a lot here lately. Of course he has those days where his walking isn't too bad. I'm just praying this holds out for a while. I have a feeling I'll be using all my sick days by the third month. After that I get docked.
I also thought about asking to adjust my hours. I'm always there early, so maybe get to leave early. I feel he is more likely to have issues later in the day. He usually goes back to bed for several hours after breakfast.
I don't know.
Auddonz• in reply to
That stinks. I know D can walk around but I also know he will forget to take his meds during the time I not there. When I tell him it is time to take his 1:00 pill he still asks me which one it is. He usually goes back to bed as well after breakfast as well as after lunch. I feel like I am in jail, speak to no one but all of you here which is keeping me sane sort of When I spoke to my daughter much earlier she said she would speak to me later but.......
• in reply toAuddonz
I guess I'm lucky my D doesn't have a 3rd time a day for pills anymore. The Sinemet and none of the other Parkinsons meds helped much. Sinemet made him sleep all the time, one of them made him unable to walk at all, and another one I think was sleepy too. So he refused to try the next step, a patch of something. But it was an issue then I remember to get him to take that pill on his own.
I wish my son would help me more too or come out more often. I think he will on Mondays one of his days off. But he works nights so by the time he gets here.....
abirke• in reply to
Experience there for me is your worst fears....I have dedicated sons but I rarely see them.....it's too hard to expect them to do for us, their own family and themselves, hire somebody. forget the VA go to medicaide care SSI...let them duke it out with VA. Oh I am not leaving any positive messages. I just want you to plan now and avoid true misery later....im sorry!
abirke, I love you for your always positive remarks. We are on medicare only and they are idiots to speak to as well. Can't afford to hire anyone, so its just us 24/7. That is why I got the hospital bed before he really needed it, always try to plan for the future since he doesn't have a clue of what will happen. Lets see, diagnosed In March and it now is July. I feel completely upside down. Thank goodness the Sinemet is working for now, Hope it continues. <3
• in reply toabirke
Good advice, abirke. But D is already on Medicare, retired. My understanding is no social security disability if you are alter on Social Security. Medicare does not pay totally. For the bed, we are going to have to pay $25 a month for a year and probably same deal on wheelchair. Working on all this now. We go to his GP Tuesday and I think he will be helpful.
And we make too much for Medicaid.
As far as th VA goes, at this point I don't care if they help one bit. But I want them to acknowledge that my husband risked his life in that rotten jungle, was wounded there, lost all mental sense of peace there, and served his country there. Sorry, I am a smidge steamed.
Auddonz• in reply to
We paid nothing for the bed or wheel chair through Medicare. Prob since we also have AARP United Health Care. They pick up what Medicare does not cover completely.But since our budget is so tight I am thinking the co pays might work hopefully for him. They get you with the specialist visits which is $50, primary they just raised to $15. I think though I am going to change the plan that D is on, since it costs $226 month to my plan which costs me nothing but the co pays. I find the Dtrs and Hospital are very happy to accept whatever you can afford monthly. I pay one hospital $5 month for something I went in for a year ago and never got a co pay bill for. Co pay for hospital ER is $65.
• in reply toAuddonz
We have a Medicare Advantage plan also. Now I'm wondering if the bed place ran it through correctly. I will check.
I am still paying on hospital bills too from the end of last year. And an ambulance bill. But you are right, most places seem willing to work with us.
abirke• in reply to
I salute you, D. I am just a mere civilian but I do respect those who were soldiers.
Now there is another war! of which we are all soldiers, Sgts, medics, and clergymen.
Fight the Good Fight D and JHMK
Auddonz• in reply to
jmhk, Since D has been on the Sinemet, the correct dosage that is, there has been a huge change for the better, except for extreme tiredness. Don't know if that is from the med or the disease. Before being diagnosed and put on it, he fell or I should say slid off the bed or the sofa and couldn't pick himself up which led to me calling the EMT too just pick him up. I will never forgot the look in his eyes, the pleading in them, holding his arm up and saying please pick me up I can't get u. It broke my heart. So I am thankful for now, for his being able to get up, walk with his walker, which is another issue, he hates it and I am afraid he will loose his balance. Day by day, that's all we can do.
BTW, our Daughter lives 3 miles away with her family and we never see them. Out of sight, out of mind 
She goes back to work in August, she is a sec ed teacher. I have to remember to be thankful that she does our food shopping for us.
I'm glad that sinemet is working no luck here. Well let me just reiterate the date night with grandma....Let the poor 14 year old sludge through it and give her memories she will come to know as good. When she drops off the food tell her to drop off the grandkids 
AVB
Nah, she has to go up see a Dtr an hour away for 2 of them and haven't a clue of what the 13 is doing. Will be 14 next month. Prob staying home. Sent her 2 pm on FB yesterday but nada
why does she have to see the dr for two of them? Yes I text my daughter to no avail........probably better that way I don't make her mad.
Well do well dear....It may all work out esp. s
when granddaughter gets out of the terrible teens!
AVB
abirke, Actually got in touch with the 13 year old via FB PM and she said she is going to come over on Monday to teach me how to use the i Phone for a few hours . We will see. Both of the other children have issues that she has to deal with which is why I hate to bother her to much, my Daughter that is, along with the 13 year old. She works as a spec ed teacher and will be going back to work in August. She has her own prob to deal with, without much help from her husband.
Well you don't have to be looked upon as a burden....offer your help ...if you can....take that thirteen year old up on that learning how to do stuff on the Iphone....ask her whats good to listen too musically. she's young, and may not be ready for what you listen to, but I promise in a few years time she may appreciate your likings.....("Oh grandma listens to this!!")
I used to be a spec ed teacher too. and a bitch,,,,,,, Sped drains you of yourself....you are no longer doing that which you went to college for....youre just pushing papers and testing students and spending nights trying to write new goals and objectives and lesson plans based on each students goals and objectives....and probably not getting to initiate those objectives but giving them to an aide to teach the kid(s) while you are mtg. with some bitchy regular ed teacher about YOUR students behavior in their class.....
AAAHHHHHtoo many bad memories....and I loved my students and would stay till 8 pm so I di not do paper work during class time,.....and nobody said thanks for your extra time. I figure out the time I actually spent divided by the pay....I was making about minimum wage!!!!
Have a good time with your granddaughter!!!!share stuff from you with her!!!
AVB
• in reply toAuddonz
I am sorry about you not seeing your daughter. I guess a lot of us are in the same boat there. People from my church and other family members keep asking me if he is helping me. Well he does have his own life too. It's not like he still lives here!
And you know I can tell this is really upsetting him and dragging him down to see his dad like this. I feel bad for him.
Auddonz• in reply to
I know where you are coming from jmhk. I really hate to bother my daughter but I think its because I have no one else to lean on just a little. All of you help so much, thankfully!
abirke• in reply to
Plan for it dear JMHK. B was diagnosed in 2013,I I quit my job teaching in 2014.....he went on medicaide medicaire and ssi ? that's all we get so we are VERY tight with our money...always were....
I hate telling you this but I cant help it.
Remember this gets worse.....it doesnt stay the same and it certainly does not get better. My last year working was hell. Bruce was still driving and by the grace of God he did not kill himself. He was still cooking and by the grace of god he did not burn himself or the house down, though theres plenty of proof he could have!!!....he was still walking on his own and again the grace of God. Oh did I mention he was still lifting free weights....OH my GOD for the grace Him........holes and dents in walls small bings on body parts as wts came rushing passed!
Please plan for someone to be in your house for breakfast, get him established til lunch turn off the breaker at the kitchen...no wait the fridge, get somebody for lunch, til one or two and be home by 3....DO NOT LET HIM GET UP TO AN EMPTY HOUSE OR STAY HOME FOR MORE THAN TWO HOURS BY HIMSELF!!!
With all grief and Urgency of preparedness,
AVB
What great advice, listen to abirke. I never leave my hubby alone, so it is just him and me and our 3 dogs Lonely yes but make your lives the best you can. I treasure the time i have with my hubby, even though there are times I cry and would like to scream. Yes $ is an issue in our house as well. We are on ss only and it is not easy, just adds to the issues we have to deal with. Try to be strong, there will good days and bad ones. Cry if you need to, I do. Chin up
• in reply toabirke
Thank you both, abirke and Audrey, for the wonderful advice and caring thoughts!
eastern, I sell antiques ad collectibles on FB. Had an antique store for ages but I am petrified to leave him alone to look for anything new. Not that anyone has $ to buy anything good. I hate junk but what else can I do to make $ which we need. I bought D the pads that he can slip into his undies and are sticky on one side so they stay in place. Then I have a big pad on his bed. It makes him feel more comfortable that he has the pad in his undies, in case he can't move fast enough to the bathroom. Available on Amazon. He doesn't wear pajamas, hates them. I have given up on the VA, I think, they have said they are over loaded with people who need help. Guess it probably is because we live in Fl which has so many elderly people. Oh, yes, we have 3 dogs and there are times that one of them leaves a present for me But who takes care of him when you are at work? His eyes are starting to close he is watching TV, some horrible movie that he knows I won't watch.
• in reply toAuddonz
Interesting. My husband watches all these horrible movies he knows I detest. My brother told me to get a set of ear buds which I did. It helps at times to listen to music. Or watch a tv show on my Kindle.
Auddonz• in reply to
Morning jmhk, Have a kindle but I forgot my password and haven't got the patience to figure the darn thing out Would help me relax though.
Passwords!!!!I have mine written ON MY MACHINE!!!!
hahahaPlease somebody, steal my identity make me have to recreate my existence.....................No you know even with the hell of my poor husbands maladies I still feel pretty blessed.........
AVB
But I do hate passwords!!!!
Hah, me too abirke. Have a folder, sort of with passwords for everything. Crossed out ones, when some sites were hacked. The poor kindle, sitting on my desk, with I don't know how many free mystery books I have on it. On a site, forget which there are always free ones. I keep on telling Don I got them for him but he doesn't abut much........
Yes I have them crossed out but the thing is I can't remember what they are for in the first place! so I have to make new ones and then stupidly and again forget to write the purpose next to the pswd ....
Whats the definition of insanity....?LOL
• in reply toAuddonz
Audrey do you have another device to access the internet? I found a way for you to reset your kindle password if you do.
Auddonz• in reply to
Just my pc jmhk
Also have to find the cord to charge it, dumb me
• in reply toAuddonz
LOL! I'm glad I'm not the only one with these issues!
Also you could use your phone charger.
• in reply toAuddonz
Sorry I took so long to respond, Audrey. I couldn't get on this site! You should be able to fix your password issue from your PC. I think. I googled it.
abirke• in reply to
Yes expecting your man to remeber to do something is only going to lead to misery. Spray and Mop Queens...being a queen has alot of facets one of them is keeping yourself in some form of happy mode.....and knowing how much your people can handle.......haha I must say, B has been able to center in the bowl and the Birke bathroom has not smelled like the Friday afternoon in the boys elementary bathroom in a while.....
Just know what he can do.....and do all the rest......and the frickein VA, be proactive there too....they have his file.....and they can find it...........you just have to tell them to!!!!Daily...They'll be so sick of you they will stop walking over that box and finally open it to discover "oh yah that's where we put his file when we were changing out cabinets...."
Smile, breath, remember your'e the queen
AVB
abirke, You are so right but I am so tired that I feel that I can't deal with the idiots at the VA or anywhere else I might have to call about an issue. You really put things in perspective. So far no bathroom issues, were when he first got out of the rehab facilities. I swear they screwed him up totally. On the 23rd he will have been home for 2 months.
QUEEN, I like that, have to remember that Also have to remember to make calls that I have been neglecting to do. If only my Daughter would understand that we miss the kids, they were in our lives from the time they were each 6 weeks old. I haven't spoken to the oldest who is now going to be 14 in age. I know she is a teen, but I miss our relationship so much. They only live 3 miles away.
Audrey (aka auddonz)
• in reply toabirke
They have the file but it is incorrect!
And how is he managing to hit the center of the bowl, if I may ask?
abirke• in reply to
HMMM....he has better flow with a drug Tamsulosin,,,,can't remember what it does but doc said it will help...so he isn't trickling nor is he hitten for 3 seconds then stopping for 20 minutes thus getting off set from the bowl....some times I adjust his torso. if he is getting too far back I help him bend fwd a bit or redirect his side-stance....I guess that would be why....first time I thought about it....just am grateful.....
AVB
You guys are great! I was just "listening" to your conversations, and I feel better. You humor in face of this terrible disease and everything we all have to contend with is amazing! Thank You!!!
LynnO
Not what you're looking for?
You may also like...
Frustration
Hey people,
So my mum has psp,diagnosed 18months ago but I believe she had symptoms a few years...
Frustration
I feel like I’m failing my husband, after reading the post on here. I had my lo in a exercise class...
CHC Frustration
Dear all,
I recently requested that Mums nursing home complete another CHC checklist because of a...
Frustration at no communication
Can anyone help? My sister 81 has had PSP for about 5 years and can't communicate now has no...
CBD oil and more frustration
I received Provocan CBD oil with great anticipation. I weaned Dan off of his morning daily dose...
Frustration brings on shaking??
Lots of tears, frustration, grief--yet thanks
How do i cope when Frank loses his temper with frustration?
Loss of ability to communicate causing extreme frustration 
