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bls0901 Asked February 2016

Is there anything for sleep for a dementia person?

My mother is a huge fall risk due to recent diagnose of ITP, low platelet count. Tonight is the first night of her being in a hospital bed with side rails to discourage her from getting out. She needs something that will make her sleep.

bls0901 Feb 2016
Going on with her body, or why she feels she bad, and if I have talked to my father lately..........dad died in 1997

bls0901 Feb 2016
Moms GP could see her on the same day as the hemo appt but at 2:40pm. No way could we keep mom out from the morning appt until the afternoon one. We are talking around 6 hours, she would be exhausted, we would have to risk taking her to the bathroom 3-4 times at least! Instead I settled to have to take mom to the Drs 2 days in a row. It certainly does not matter to the Drs that in order to get my mother to an appointment it is a 2 1/2 hour ordeal for our family. I need help getting mom in and out of the car, lifting the wheel chair into the trunk, leaving her and with my sister to take her up to the office while I find a parking space in the parking garage, then I meet her there.
When I look at my mom I see the confusion in her eyes. She has no idea what is

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debdaughter Feb 2016
I understand and at least if they're in the same office might work out ok, just know that one time I wanted to have dad's 2 appts. in the same town - out of town - the same day but it was just too much for him, just something to think about. But amazing, isn't it, how they can work you in when the doc wants it done! I can understand him wanting to see your mom; things might have gone different for my dad had his hemo not turned him over to his GP; I'm a little surprised they're even doing the infusion drugs on your mom; they wouldn't my dad; granted he was a little older but still, nothing was said about it at your mom's age either; he was just put on medication but his was the opposite, for too high a platelet count. But the reason I asked about hospice was after 2 yrs. of not drug infusions but blood transfusions, starting with a hospitalization with renal failure, which, actually, based on what you said, maybe that's why they wouldn't do the chemo infusions but they just never said that; actually I'm not sure the hemo knew that - does your mom have a nephrologist as well? - anyway wonder if the meds he was on may have caused his renal failure - they definitely ended up causing his platelet count to plummet eventually, causing a type of leukemia - he was your mom's age when he was started on that and they said they never expected him to be on it long enough for that to happen - a doctor said hospice should have been called in at the beginning of all that, so possibly not putting him through it either

bls0901 Feb 2016
No, I have not talked to anyone about hospice but I will ask. Right now we are trying to find out exactly just how far into renal failure she is. Tonight will be the first time that they will be giving her a sleeping aid so I hope that it works. Due to the predisone her blood sugars are extremely high, which was is being chased with insulin, which of course leads to frequent urination. The Hemotologist did agree to lower her dosage without seeing her since he started taking her down off of it since last week. He is insisted that mom be brought to the office next week, at which time I told him that his front office people already told me that there were no appt. available until March 9th. Miraculously they found an open time for 10:15 am next Wed.! Now to get the geriatric GP office that is up 2 floors from the hemo doc to give mom an appt the same day would be yet another miracle!

debdaughter Feb 2016
Has anything actually been said to you about hospice?

bls0901 Feb 2016
Meant to say literature advises against usage of the infusion drugs do to her health condition. And yes we will be inquiring about hospice.

bls0901 Feb 2016
The first two infusion drugs the dr spoke of clearly can not be used on a person with stage 4 renal failure not the mention that she had 8 out of 14 of conditions mentioned in the drug literature advising usage due to significant risk. The side effects are horrendous with these powerful chemo drugs and due to my mothers extreme dementia and lack of being able to articulate if she was experiencing bad side effects we (the family) feel that this would be mentally and physically abusive. Quality of life is what we are concerned with. The drugs spicfically state that risk of stroke is the highest in the first 24 hours of the drug. Also when hreading studies of the drug its effectiveness is only in the 50% range yet people report that their platelet counts soared and plummeted for reasons that the Drs could not explain. I found out online that the first drug was only tested on humans up to age 65 and mom is nearly 87.
Last night was the first night with the hospital bed a full side rails. Predisone keeps mom so agitated that she does not sleep more than 20-30 min at a time. The caregiver did change her diaper 3 times during the night and moms at up in the bed for long periods and of time. Her predisone is being lowered from 60 to 40 for the next week and should be going down by 20 again next week. GP added low dose of trazadone starting tomorrow.

cwillie Feb 2016
Why wasn't she given a transfusion? I also see potential problems with bed rails for someone determined to get out of bed anyway, with her complicated health problems I wonder if it is time to look into a higher level of care than assisted living can provide, either skilled nursing or hospice. Both would provide lifts to get her off the floor is she rolled off a lowered bed.
May I ask why you won't continue to see the hematologist? It seems to me they would be best suited to diagnose and treat the underlying cause, or have you decided no more treatment??

jeannegibbs Feb 2016
You don't think she will try to climb over the rails? Is she just too weak?

While she is on the predizone could she use a bed-side commode so as to not have to walk far, and can a staff member check her frequently? Does she remember how to push her call button? Could she get 1-on-1 care during the night while taking this drug? Presumably that is a fairly short period, right?

I wish you the best with this!

bls0901 Feb 2016
She is currently on predizone for the ITP. Predizone is bringing up her platelet count but it The predizone is severely messing up her blood sugars, with insulin she does not come down into normal range. High sugar makes her need to urinate every hour at night, she will not use her diaper. She is extremely weak, out of breath when she is walking with the care giver no more than 6 feet at a time. She is exhausted during the day from not sleeping at night. Caught in a catch 22. Could not get an appt. this week with Hemotologist to lower her predizone I am going to ask her GP today to lower it. We are refusing to do the infusions or injections for the ITP due to the extreme side effects that come with them and since we have decided that we do not plan on going back to the Hemotologist . Mom also is in stage 4 of kidney failure and dialysis would only start the bleeding again because of the ports and because frankly mom would not be able to sit through it.
The rails on the hospital bed (just got it yesterday) are full side rails and I am taking the bumper guards there today. Putting her bed very low to the ground or having her mattress on the floor is not an option either I don't think, she would be dead weight trying to get her up off the floor. Because of he dementia she does not remember to use her walker even when it is right beside her. They do not let her get up and walk when she wants because she is a fall risk. I have supplied 2 recliners for her to be seated in one in her bedroom and one in the living room so that when they put the foot rest up she can not get out.
I just want her off the predizone ASAP, that will take care of the frequent need to urinate, and once that is done then a sleep aid so that she will sleep through the night.

jeannegibbs Feb 2016
There are several meds that can help a person with dementia sleep. It depends on what the reason is and also somewhat on the kind of dementia she has.

Is it an over-active bladder problem?
Does she have pain that wakes her up frequently?
Agitation?
Does she sleep all day?

Have you discussed this with her doctor? There is where a med solution would have to start. The person doing the prescribing should know what other meds she takes, and, if possible, the type of dementia she most likely has.

I believe your profile says she is in a care center -- is that correct? Side rails can be dangerous if the person tries to climb over them or get around them. I assume these rails are not long and they don't really restrain Mom. But then, what is the point? Explain a little more about the rails.

A common approach to fall risk from bed is to lower the bed to very close to the floor, and put a cushion along side the bed (looks like a gym mat). Discuss this with the Director of Nursing at the care center.

Hospital beds are AWESOME for many purposes, but I'm not sure how they fit in to a program to prevent falling.

Having her sleep through the night is best, of course. That isn't always possible. Preventing damage from potential falls is a backup plan.

This is a common problem with dementia. Do let us know how this goes for you. We learn from each other.

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