sleepy and weak

[OllieFisher1]

Hi, my pop has been weak and sleepy for four days straight now. He is still eating and drinking as long he is being fed. He cannot walk even with a walker. We have seen this before, but not for four days straight. Hes in no pain which is good but its a difficult state to see him in. Does it mimic anyone elses experience? Spoke to doc who said its basically evidence of progression which I was expecting. Had discussions today about no hospitalisations, no feeding tube if it gets to that, and no invasive interventions.

[honjen43]

Hi Ollie,I noticed changes over a 24hr period in my hubby who had CBD. There were also periods when he was less active and slept more over 2-3 days. I would suggest this is a progression too.

You may also find that in a day or two, your dad has benefitted from the 'rest' and may rally for a while.

My hubby had a sleepy period while in hospital, then rallied with the excitement and stimulus of being discharged and moving to a new venue, a resthome. This lasted a few days and then he relapsed again.

Keep talking to your dad as he will still hear you. I hope he rallies for you.

Hugs

Jen xxx

[OllieFisher1 in reply to honjen43]

Hi Jen. Hope you are doing well. Hes been up and down but never seen 4 days. Its so funny because just about a week ago, we took him to the family home for a few hours (resthome over the road, and got a ramp built), and he was walking around the kitchen independently. The fluctuations are an emotional roller coaster. In a way I do hope he will progress so it all ends in peace. I hope he doesnt get to the depths of the condition I read on here.

[honjen43 in reply to OllieFisher1]

We all hope we won't have to experience what we see in others!There is no way of knowing what will happen next, or how fast it will happen. We just know how it will end, but not what symptom will signal it. What we do know is that it is never easy, however it happens.

Talk to your dad as if he is there. It may stimulate him to make some reaction. Tell him what is happening in your family, plans for Christmas, people who are coming to see him.

Have you talked to a Hospice nurse yet? Talk to your GP and/or to the rest home staff about getting in touch, or there may be staff who have experience at the rest home. You will find any of them are understanding and may be helpful to you at this time, as well as to your dad. However, there is no knowing whether their help will be needed tomorrow - or in 6 months time.

The doctor on call at our rest home was very understanding when hubby moved in, and had a reasonable knowledge of CBD. I had to call her on a 'day off' when journey's end started. One of the young nurse aids also came in when she heard and spent time with us.

Stay close to your dad. You may find that he may still have some lucid and meaningful moments. You will appreciate that he is only just across the road!

Big hug!

Jen xxx

[Indiana-Girl]

good morning!

I am so sorry you are dealing with this insidious disease. My husband has CBD. He is not necessarily sleepy all the time, although he is getting more sleepy as time progresses. I have to feed him most of his food although he tries to feed himself with mixed results😉. One thing you might try to alleviate the drowsiness is exercises. My husband has not been able to walk now for over a year. We have him do wheelchair exercises. He can lift his legs or move them out and in. We have a 2#weight for him to use on his arms. We habpve him do a climbing motion with his arms. He has to count the repetitions out loud. We do this twice a day. We also play checkers with him. This is known as cognitive exercise. He really enjoys it and looks forward to his games. Perhaps if you try these things it will stimulate him and help him. Our NP says the exercises seem to be slowing the progression of the disease, for sure they improve his mood and they bring him pleasure as he accomplishes something. I don’t know if this will work for you, but it is helping him immensely. May God go with you in this dark journey.

[OllieFisher1 in reply to Indiana-Girl]

Thank you. Only one month ago, he had a final physio session where the therapist gave him some exercises. Basically just moving his toes up and down and sliding his feed up and down on the bed so his knees bend. I even tried a few when he was sleeping and he barely reacted. Its a very deep sleep, so peaceful, I want him to pass because this is not living. Tomorrow it will be one week in this state. We can feed him and he still has a strong chew, but he could not tell you what he ate. Games would be great, except dad can barely see because he has nystagmus since he was a child. His vision is very bad now. He can some enjoyment from TV when alert, or just being wheeled around outside. I imagine everyones PSP/CBD journey is so different because everyone has got other varying medical issues, had varying diets etc.

[Stephanielayell82]

Yes we've definitely have had this issue for a couple of years now. My loved one is 7 years almost 8 years into disease. I've noticed the more active she wants to be the harder it's on the body. Example she use to get out the house approximately 3 times a week we are down to 1 if that. It usually would like her about 24 hours to came back with energy or eating well. Now it has taken as long as a week to bounce back. She can barely keep fighting at a rest BMI it takes everything out of her just to get up and get dressed. Her body is completely stiff and legs has no muscle left and now her arms are locking in place. I've had to have deep conversation with her that she may need to go to a home as we are finding it near impossible to keep doing everything for her. Plus her brain is worsing so she doesn't remember day to day how hard it is. I use to get worried as the time spans grew longer now I don't as she can be completely off balance for weeks at a time. Best wishes to you and your pop.

[OllieFisher1]

Hi Stephanie. Dad is already in a resthome. Hes been basically sleeping or just lying with his eyes closed for nearly a week. He can eat and drink, but its basically putting a spoon or cup to his mouth and he goes from there. The only time he is up is to go to the toilet and it takes two staff. Being unable to open his eyes is a big feature of his condition, its the ongoing drowsiness that is new. Its happened before, one or two days, then he has his energy back.

I saw your previous posts, and I wanted to tell you that he also has made accusations. One was he was being roughed up by a male nurse, people thieving from his room, people leaving this by his bed so he will trip up. This is while he was in the hopsital and had severe delerium. Now that hes out, he does it a bit but its temporary and forgets about it. A couple of weeks ago, he was saying a nurse was trying to blackmail him and wanting his money. You just cant rationalise with him, and he feels its so real. I just tell him, that when we have evidence, I will go to the police and wont give her any money. Although its contributing to the untruth, it does calm him and the next day he does not even remember saying it.

He hallucinates as well. He says "I don't like that girl over there", or "where did you pick up that kid over there". Its a funny disease certainly. Its comforting to hear from other people when there a few solutions.

[bichonbear1]

Hi There, my mum has CBD, my dad is caring for her at home with the support of carers 3 times a day. I live close by so spend a lot of time with mum and supporting dad. Much of what you are saying is exactly what we have experienced with mum. There was a sudden downturn/decline, the trigger was a short 2 night hospital stay due to dehydration as a result of covid. Following that, mum lost all movement, ability to do anything, sleeps a huge amount and her cognition declined severely. Mum gets hallucinations and delusions, similar to what you experience. Mum was adamant dad was having an affair and we could not rationalise with her (that has stopped now). Mum was put on an anxiety medication which calms this all down. Urine infections can make mums confusion worse and causes hallucinations. We have to feed and water mum, she has lost a lot of weight no matter what she eats. We have put this al down to progression of the disease. We fear the next steps of deterioration will be swallowing and chewing, we dread that time. My thoughts are with you and your dad.

[OllieFisher1]

Dad had a fixation that someone was trying to force him to sleep with another woman other than my Mum.........fascinating to realise that perhaps its more common that we realise. All the best to you as well.