His new thing.: Larry has decided to get up... - PSP Association

PSP Association

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His new thing.

Larry has decided to get up at 1 or 2 in the morning and insists on going down to the living room because he can’t sleep. He wants to be in his lift chair that is also a recliner. The first time he did this the other day I was resistant but took him down. Needless to say I didn’t sleep well knowing he was on his own down there. This morning when he did it again I decided it’s on him whatever happens. He would sleep eventually if he stayed in bed but he is convinced he won’t. Once in his chair with the TV on he usually goes out quickly. This will be the new normal until he does himself serious harm. I know he will try to get up to make something to eat. He’s still under the delusion he can. That’s when the fall will happen breaking something. I’m far too tired to will struggle this.

29 Replies

Oh I know about the exhaustion and I sympathize entirely. It's so incredibly debilitating to try to deal with all the daily difficulties when you can't get proper rest, night after night after night. It's a killer. You are right to try to choose your battles; you have to husband your own strength. Would having an alarm pad on his chair help you to sleep? Perhaps with an alarm you would know that you'd be wakened if he got up and you might sleep more soundly. Or would that just disrupt your sleep more?

Sarah

in reply to easterncedar

An alarm pad would only give me more anxiety listening for it. I have decided to deal with whatever happens. My feeling is he well past the halfway mark in this disease. At some point something is going to happen like an infection or fall. It’s inevitable.

Marie_14 profile image
Marie_14 in reply to

Jeff I know that feeling too! Guess we all do? I don't know what to suggest! G never suggested getting out of bed because he wanted to be near me. However he did wake me to tell me he couldn't sleep!

So I eventually got fed up with that and told him I would go into the spare room if he kept doing it! Thankfully he stopped. However when I woke in the morning he was always awake too and I never knew if he had been asleep or not. He must have slept at some stage?

Hey also managed to fall going down the last few stairs and broke his arm so you are right to be concerned about Larry hurting himself.

Marie x

The challenges never end....until life is gone.

Sending you positive thoughts.

Blessings and prayers.........................

Jeff, I know the feeling too. The exhaustion was, for me, the single biggest obstacle to getting through this disease with sanity and health! For what they're worth, my thoughts:

- He is still an adult with his cognitive capacity mostly intact, right? So let him self-direct. Let him take the risks and have some control. Sure, there may be a disaster - but PSP IS a disaster!! Why grind ourselves down over every (and there are so many...) symptom and situation??

- Can you assess the area between the recliner and the food/fridge for hazard and place bumper-noodles, or padding or whatever around to minimize risk?

- Can you leave some food and anything else desirable, out on a table close to him, so a snack is handy should he awake and feel like it?

Get whatever sleep you can - it is the key to staying alive and sane through this!!

Huge hugs to you XXX

Anne G.

in reply to raincitygirl

Thanks. This morning it was 12:30 he went down. He feels more comfortable being in his chair. I put him there. I took a diazepam and went back to bed. Took about 2 hours to get back to sleep but slept until 5. This is the new norm.

I echo all the advice being given. It is so hard as it just gives us all mental exhaustion trying think everything through as well as the physical exhaustion but then I tell myself I would sooner have all of this exhaustion myself than be the one with bloody PSP, it’s a hateful condition and so cruel

Sending you hugs 🤗

Sarahx

in reply to Hiking13

I wouldn’t want this disease but I think I would do it better. He’s pretty much ignored all the tips the physical, speech and occupational therapists showed him. If I hadn’t been with him for 3 years of therapy I would have less of an idea of how and what to do. I got far more out of the therapy then he did.

Hola Jeff166!

Dormir bien es esencial.

Después de 6.5 años con PSP todavía tenemos una situación bastante estable por la noche.

1) Es normal que el paciente trate de moverse. Nosotros pasamos por una etapa similar. El paciente trata de luchar contra sus limitaciones motoras. Las caídas y los golpes fueron frecuentes.

2) Para conciliar el sueño, creo que puede ser interesante (consulte a su médico):

* Hacer ejercicio físico (activo y pasivo) y terapia del habla por las mañanas. Además de un paseo con un andador o bastón (sujeto por las axilas por una o dos personas) un mínimo de 200 metros. Subir y bajar 32 escalones. Todo esto puede llevar de 2 a 3 horas. Después, y antes de comer, descansar de 30 a 45 minutos.

* Antes de la comida y debajo de la lengua 6 mg. de aceite de CBD (Entourage) seguido de algo que disipe el mal sabor (dátil, bombón pequeño, etc.)

* Dieta mediterránea.

* 1 a 2 horas de siesta.

* Por la tarde, una actividad fuera de casa. Evite las actividades que puedan excitarlo o sentir triste.

* Media hora antes de la cena, una pastilla de Lorazepan 1 mg.

* Después de la cena, higiene bucal y necesidades en el aseo.

* Cabecero de la cama un poco elevado (10º a 20º).

* Temperatura habitación alrededor de 24ºC y 42% humedad relativa.

* Aconsejable usar pañales para la noche.

* Por lo general, el paciente esta acompañado por la radio durante toda la noche, la enciende cuando se despierta y se apaga automáticamente a los 60 '. Esto ayuda.

* Siendo un poco flexible, trate de seguir una rutina sistemática en los horarios.

En nuestro caso tenemos un descanso de 10:00 pm a 8:00 pm

Esperando ser útil

Hugs and luck.

Luis

I appreciate your information but it is unrealistic for both of us. He will do what he will do. There isn’t much he will do if he doesn’t want to do it.

racinlady profile image
racinlady in reply to

I've been there. My husband wouldn't do any of the things they suggested. I feel like it's the apathy that causes that. Apathy was the hardest thing for me to deal with. Frustrating as it was, I finally had to accept it and let nature take it's course. I'm like you, I think I would try harder. But, I don't have PSP!

When my husband got to the point that he was needing help throughout the night, I wasn't able to continue caring for him. He would wake me up, I'd do what he needed and he would go right back to sleep while it took me hrs sometimes. I'm pretty sure, looking back, that part of not being able to go back to sleep was my anger at being awoken. About the time I would get back to sleep he would need something else and we'd start again. I knew I couldn't do it anymore when I would fall asleep while eating or at a traffic light when driving. I was like the walking dead. After moving him to assisted living, it took me about 3 months to get back to a normal sleep pattern. It sounds like you're getting to that point. I know you've heard this many times, but you HAVE TO TAKE CARE OF YOURSELF! I don't know your circumstances, but, if it is at all possible, you need to at least have help through the night. I don't think anyone can do this 24/7 for very long.

Hugs,

Pat

in reply to racinlady

I am taking care of myself as much as possible. Right now I am lying on a heating pad for my back as I read and respond to this. As of now once he is in his lift chair he is happy enough. I tend to wake in the middle of the night naturally for a while. As long as he only gets me up once a night I should be OK. I do know at some point I won’t be able to do this.

Sometimes I think we should use a hammer to knock them out for a few hours.(Only kidding). Gene gets up at 11or 12 and says he has to go to his lift chair. I have to hang on to his gait belt while he uses the walker. Then has to turn on the tv. About every hour or two he has to pee so I get up each time and bring the urinal. I am very tired and don’t even respond to this supportive sight very much. We tried melatonin but that gave him severe diarrhea so we chose the better option, no pill. Hang in there. Nancy

in reply to Artteach10

This morning it worked out for me. Took him down and told him not to call me. I took a diazepam and got back to sleep eventually. Slept until 5 which is like sleeping late for me.

dollydott profile image
dollydott in reply to Artteach10

Dear Nancy

I am sending you the biggest hug.

You must be absolutely shattered

Love Lynda x

Hi Jeff. Nigel has been doing the same most nights for the last few months. I find if I argue with him about it being the middle of the night he gets annoyed so now I get up with him and give him a drink and a biscuit then sit in my chair for a while with minimal light. He eventually starts to yawn and I suggest we go back to bed and he seems to think this is ok and settles down again. I know it means I am wide awake but I just lie in the bedroom worrying if I go back to bed alone and this way seems to be the best solution and I am not as angry so I get back to sleep too. I hate this disruption but I hate it more when he gets cross about it not being night time. Good luck and big hugs. AliBee xx

in reply to AliBee1

I don’t argue with him it would be pointless. He went down at 11:30 last night. Going down when I got up at 4:30 he was sitting there awake. No idea if he was awake all night or not. He is a night person. He sleeps all day. It’s on him. I am hoping being bored will eventually keep him upstairs. He has no technical ability. He screws up the TV every time he turns it on. There isn’t anything to do or entertain him while I am asleep.

Dear Jeff

I think your doing a great job and even though it's worrying you seem to have worked it out just right. 😊

You need your sleep and you can't stop Larry from doing what he wants and at least he sleeps in his chair eventually with the tv on .

Good for you recognising your own needs otherwise you would be unable to do any caring at all.

Hugs Lynda x

in reply to dollydott

There are going to be good days and bad. Today is starting off bad.

Oh dear I'm sorry.

Hope it gets better as the day goes on.

Yes good days and bad

Xx

in reply to dollydott

If I do my exercise things will feel a bit better. My big project today was to wash down a wood chest of drawers in the kitchen. Due to the high tropical humidity we had for about two and a half months all the older wood furniture has started to have mold blooms on the wood surface. It’s now done so I can feel good about that achievement.

My husband got up every night for a couple of years, went down spiral steps alone to watch TV so as not to disturb me. I was afraid for him but he had not fallen. When he finally did fall down the steps, it was 9 in the morning, he was coming up to get dressed and I was upstairs. For him it was the final fall. He never made it home again.

Every case is different. In hindsight I would have put the handicapped bathroom and bedroom downstairs and moved down. Instead, I put them in after he fell, anticipating his return home. He never saw them.

Do what's best for yourself. You need your rest.

Hugs,

Liz

in reply to Mikey12345

Thanks. Thinking about his decline I know he is half way or more through this now even though he is still healthy.

Mikey12345 profile image
Mikey12345 in reply to

This is difficult, I know. We can only use our best judgment as we never know what will happen. Bless you.

Liz

Hi Jeff

I absolutely agree pick your battles. My hubby insists on shaving in the middle of the night spent weeks trying to persuade him not too - now I leaver the electric razor by his bedside!! You can not argue with PSP. Sleep disorders as part of PSP are such a huge challenge.

Get all the sleep you can whenever you can that is my philosophy!!

Sending lots of love Tippy

in reply to Tippyleaf

Last night I took a plastic urinal into my bedroom. When I had to pee I used it instead of going into the bathroom. If he hears me he knows I’m up and rings his bell to go downstairs whatever time it is. No summon for me this morning.

Tippyleaf profile image
Tippyleaf in reply to

Great initiative!!

Love Tippy

Wow. I wish I didn’t, but I can relate to all of these comments. I think I’ll be going off the deep end soon and my guy will really be left to his own devices! Then what?

Sam has been getting up 5-7 times every night. Sometimes 3 times an hour. Each time he might spent 10-15 minutes trying to pee. (I did check with the urologist but it seems to be the PSP.) He was maxed out on sleeping pills so now, in addition, I’ve added CBD. (So glad it’s legal now in California.) I think it’s actually working. The past few nights he’s only gotten up once or twice. I can deal with that.

Now I need to figure out how to control all the other wierdnesses. He will put on and take off his jacket continuously. It could be every 5 minutes he’s changing it. And of course he messes it up, putting it on backwards and inside out. If it wasn’t so sad it would be funny. And then there is the demand I clean his glasses, get him water (which he chokes on), and on and on.

And I find myself angry at him. It’s not his fault, it’s the disease. But he frustrates the hell out of me.

Guess I’m venting here myself but I must say the CBD seems to be helping so if it’s available to you it might be worth a try.

in reply to bsilverman

You are preaching to the choir here. Larry does lots of the same stuff. When I am well rested it easier to deal with. He said to me several months ago “You’re never in a good mood anymore.” I’m thinking “No shit Sherlock.” I’m exhausted. Medical marijuana has just been legalized in Pennsylvania. I may be investigation CBD oil. We all persevere.

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