PSP Association

Major changes

Warning long post!

In the past 2 months there have been major changes. My husband has taken a major down turn according to the doctors. He went from being somewhat self sufficient to not wanting to be left alone. It all started with me being at work and getting a call from our oldest son. Telling me that his dad was talking crazy stuff and his uncles (my husbands brothers) were on the way to my house. Because my husband had told them that he wasn't going to be here (our home) much longer, he wasn't going to be able to stay in the house, he had no money, the bills weren't paid, we didn't have anything to eat and he didn't have anything to wear. I started to leave work and go home, but decided not to. See his family hasn't believed there is anything wrong with him, the doctors have to be wrong. So when I got home a few hours later from work, his brothers had had a chance to go through my house and see for themselves that there is something wrong with him and there was food and clothes. I checked his meds and he had not over medicated himself if anything he may have missed 1 dose. Of course I had to tell them that the bills were paid and that he had no idea about the finances because he hadn't taken care of them in years. Then his middle brother Mike asked well what about him being able to stay in the house (the nerve!). Or course he is staying in the house he lives here! Mike then tells me he thought my husband was going to hurt himself. I said if you ever think something like that you should call me first! I can get my next door neighbor to check on him, call for medics and I can be home in minutes. They drove 40 minutes instead of calling me. His family is finally seeing there is something wrong, I've been telling them for 2 years. However his mother still tells me he can beat this. I get no support from them.

That was the start of the down turn. My husband continued to talk crazy stuff if he talked at all, he wasn't bathing, he had bowel incontinence, wouldn't eat. The doctor doubled the Sertraline to 200mg and the Trazadone to 100mg. After 5 weeks he seemed a little better. Still not talking much but not all the crazy talk, started eating and was going to the bathroom on his own. Still needed prompting to shower but not help.

He seemed to have a couple of really good days and then down hill again. I had to call the doctor the week before Christmas and he added an extra 50mg of Trazadone in the mornings for anxiety and tremors.

Then the holidays... didn't seem interested in our children, didn't open his gifts, he's not talking much, barely eats, will not bathe unless helped, needs prompting to go for a bowel movement. Has no problem with urinary. He is still walking and hasn't fallen. He stands in our master bathroom for hours at a time. I can not seem to get him to go to another room. Could he be staying in the bathroom because it is a smaller room and feels more comfortable/secure?

I have hired someone to stay with him while I work. I have to work to cover our health insurance, etc. (I'm 57 & he is 63) He doesn't qualify for medicare until Sept. 2018.

It seems that when we see the meds are working he will have a couple of good days and then take a turn for the worse. Has anyone else seen this?

He can not figure out what to do, he no longer does even the simple household chores. He told me "I can't think". (I'm so sad for him)

Thanks for reading my long vent.

Alicia

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I don't have any answers to help you , I hope someone on here does . Hugh sympathy for what you are dealing with x

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Hi

It sounds a nightmare.

I would get the GP in and ask them about the possibility of medication induced psychosis.

Though rare sertraline has been associated with that.

medind.nic.in/daa/t13/i2/da...

Combinations of medications can also cause this. Best get that ruled out.

PSP can do all sorts of things. So it is about ruling out the possible and managing what there is after that.

I don't mean to be blunt. What you are dealing with sounds emotionally harrowing and tough in terms of practical caring.

It wasn't a long rant - you will have to do better in that dept. ;)

It's a horrid illness for the person and the carer.

My heart goes out to you both.

Warmly

Kevin

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Thanks for the article! I will ask some questions about the sertraline. When the neurologist double the dose it stopped the "crazy talk" and he was doing better. Could it be that he is somehow building up an immunity to the drug? He has CBD and the neurologist showed us atrophy to his right frontal lobe.

It is awful to watch him struggle.

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Hi Alicia

I am so not a doctor on all of this. However some people sometimes develop a tolerance to SSRI's like sertraline.

I think the point I was trying to make, poorly, was t get the GP to check meds as well.

I am not so experienced with CBD, but from reading this site it could be the CBD. Do you have a neurologist? This is the sort of symptom I would telephone the neurologist on and have a quick telephone consult.

Yes, watching these illnesses develop in the ones we love is heart breaking.

Wishing you both the best

Kevin.

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Hi Alicia, rants are allowed and encouraged here, especially long ones. Life doesn't sound much fun for you. I agree with Kevin, talk to his doctor. Make notes of everything he says and does. I know some that have actually videoed their loved one, to make sure the medics take them seriously.

I totally understand how you feel about his family, I too, had to go through this. As much as you need and want them, try not to get worked up about it. You won't be able to change them. Save your energy to fight battles you can win, or need to!

Everything you mention, I have seen in my husband. The medication that seems to work, not enough to do any good, but change that gives you false hope. Definetly, the not being able to think. I remember Steve saying exactly the same.

Know you are not alone. We are all here for you, to listen to your rants, hold you, while you cry.

Sending big hug and much love

Lots of love

Anne

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Video...good idea.👍

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Thanks Anne, you are right I need to let go of the anger I feel when dealing with his family. I wish they would leave me alone. They keep telling me I should go to another doctor. The one they want me to take him to is a brain surgeon, that cut a tumor out of someone they know. I've told them he doesn't have a tumor and that we have had 3 different doctors that have told us it's CBD.

It helps to know that I'm not alone in this awful journey.

Thank you!

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I'm sorry, Alicia, some bits of this seem familiar to me. I also had to hire someone to stay with Henry while I was at work, and that was better, I do think, than my cobbling together visits and home therapy appointments as I tried for a while. He ceased to understand that he couldn't walk without support. He started to wander, and I had a couple of calls from neighbors who found him outside on the ground. I never had the kind of interference from family or saw any long-lasting episodes of psychosis you are dealing with. There were a few days here and there where he was lost in a sort of dream state. The good days alternating with down turns is very common.

Standing for hours, check. Variously incontinent, check. Bathing only with help, check.

Again, I'm so very sorry. I think you should be prepared for more deterioration, although Kevin's point about sertraline is a good one and should be discussed with his doctor. It seems to me that your husband should probably not be relied upon to take his meds on his own, especially as sertraline can have bad effects if abruptly abandoned.

Big hugs to you. Please keep in touch. Love, Sarah

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Sarah thanks, I took over giving him his meds 2 months ago after that major down turn. It's nice to have good neighbors, we have been in our house for 30 years. When Fred is outside the neighbors will come over and check on him.

It's good to know that we are not the only ones dealing with the good days followed by down turns. It also helps me to know that the standing for hours, incontinence and bathing issues are not unusual. The dream state you mention seems a like a good description of what Fred is in when he is not really responding. Like he is lost in thought or trying to think about something.

Thanks!

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So sorry to hear this, george goes on about money, bills, we brought our house 4 years ago and he keeps asking me to phone the solicitor about the paperwork. Don’t have any of his family that interfere, which I suppose is a good thing. Sending you a big hug, hope you get this sorted out quickly. Yvonne xxxxx

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It sounds like you are in the states what I would do is go in through Social Security having declared disabled I did this with my wife some years ago she's only 65 +now

she was declared disabled several years ago and she started collecting Social Security then and disability and I hope that will help

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Thanks! He was approved last year, the medicare will start Sept.

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Larry has delusion and confusion. He isn’t on any medications. Most of the time telling him it’s a delusion is enough.

He does have a financial obsession. Every few months he announces his bank account is messed up and has to go to the bank to straighten it out. After my I umpteenth eye roll I do battle with him about it. Humor them was a suggestion I got from a video watched on YouTube about the delusions. I do that. Wait a few days after explaining nothing is wrong. He comes around. I know at some point he won’t.

The plus for you is his family is beginning to get a clue. For them to get a dose of “crazy talk” is what they need. Dealing with this is hard enough without their denial. Let them know they can help.

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Has his doctor considered at lumbar puncture (spinal tap). He’s still pretty young. It’s a long shot, but it’s worth asking about,

I hope somehow things calm down and his family begins giving you help and support .

Karyn

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Thanks Karyn, yes one of the doctors we went to did a lumbar puncture and the hospital messed up and didn't send the sample off to the Mayo Clinic. The doctor wanted to check for Tau protein. Then they did a PET scan and it showed some vascular issues. The MRI showed atrophy to the right frontal temporal lobe. EEG showed nothing. So many test....

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Dans MRI also showed atrophy, but more on the left temperol lobe. The lumbar puncture appeared Ok at first, but then showed high levels of immuno globins and protein. Mayo said they have seen it in PSP patients, but very rarely. It indicates a very high level of inflammation , yet treatment is not doing much.

Mayo did the lumbar puncture because they thought his disease was progressing faster then Normal. They said they wanted to leave no stone unturned. Nothing seems quite right. Sad

Karyn

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Alicia,

Poor you - sounds really difficult. In the UK our Parkinson's nurse (who deals with PSP also) calls Trazodone an old-fashioned 'dirty' drug and does not recommend it. Ruth did not get on with it - it caused her horrible semi-awake dreams even on a low dose. But she is having no trouble with Sertraline that she is now on.

Richard

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Thanks Richard, I'll take a look at the side effects of the Trazodone again. Fred was having vivid dreams before the Trazodone. Once he started the Trazodone the dreams stopped and he started sleeping at night. He wasn't sleeping and was up pacing all hours of the night. We were both exhausted.

Alicia

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My husband is similar cognitively. He tells me all the time he wants to go home, when we're already home. He also tells me he can't think, that everything is so unclear. It's very frustrating to him because he knows that it isn't right. I'll say something simple like let's watch tv and he'll tell me he doesn't know how or can't figure out what I'm talking about. It's sad and scary. Some days I have to prompt him to get dressed. He'll stop in the middle and just sit and stare. He still has some good parts of the day which I'm very thankful for. I still work also for health insurance reasons. one of my sons and his family live close, so if I have to I can call them to check on him while I'm at work. I'm not sure how long I'll be able to continue work though. He won't take any medication other than his Gabapentin, so we just take one day at a time. I don't have any answers for you, just know you're not alone with this struggle.

LynnO

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Thanks Lynn, I have to prompt my husband to do almost everything. He no longer brushes his teeth, showers, changes his clothes unless I prompt him. Just to get him to go to the bathroom (bm) and shower it takes almost 2 hours. As far as dressing I lay his clothes out for him. He can't think through what to wear. To make my life easier after not being able to get him changed into pj's a few times and him sleeping in his clothes. I bought sweat pants and long sleeve t-shirts. That way he can wear them all day and I don't have the added stress of trying to get him changed a second time. I'm so tired, now I only try to get him showered every other day.

It's great you have family that can check in on him!

Thanks,

Alicia

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I'm not looking forward to the day where he can't do anything himself. I can only imagine how tired you are. Sounds like a very good idea about the sweat pants. Whatever you can do to make your life easier! I am blessed to have family close by. They just moved this past summer to be closer. try and take care of yourself. So much easier said than done.

Lynn

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Sounds like time to get some help in, if possible. Either to do the showering, or some other type of care. Someone to do the housework, the garden, walk the dog. Anything to relieve the pressure on you. Looking after someone with PSP is not a one person job!

Sending big hug and much love

Lots of love

Anne

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