Hi All,
I have a question. My grandma is 92 and I care for her. She has dementia. It had a sudden onset after she had oral surgery while she lived alone and allowed her mouth to become infected. One day she sounded alright, the next she didn't know what was going on. It was as quick as that. The infection had spread to her brain. She lives with me for many years now. Recently she fractured her spine and pelvic bone. She is now doing much better. The problem is this. She NEVER sleeps. She cat naps throughout the day. There is nothing that we can do to stop her. We wake her, but she fights. She was always up late but now she is unable to get around unassisted. All night long she screams my name. She calls me even to move her foot which she kicks off the side of her bed. I have had two nurses quit on me because of this. At night she calls every 2 minutes or so. I cannot afford to pay the cost of an , "awake" nurse, just someone to sleep in her room and help her a bit. So now it is back on me again because there is no sleep. I have 4 children a husband and a small business. All are suffering.
I was wondering what medications any of you have found to be useful in helping someone sleep. Any we have tried have only maybe given her one hour and then left her so confused she can not be dealt with.
I have tried making bedtime routines, different types of lighting at different times, soft music before bed etc... none have worked. We have gotten to the point whee at 4am we are both yelling at each other. Well really she yells at me and I cry.. I am just so tired and now the other day I tripped over her commode. I literally fell over at 5am from lack of sleep, just fell asleep on my feet waiting for her to be done. I hit my cheek on her night table and now have 17 stitches in my face. If that was not bad enough my leg was killing me. It turns out I tore my meniscus in my knee so I am now with a cane, I face much therapy and maybe surgery.
She feels badly when she sees' me like this and asks over and over what happened but then when it comes to her needs she turns into some kind of monster who just doesn't care if I crawl into her room sobbing in pain just to have her ask me to move her darn foot in the bed or something. If I do not respond she screams more and more and starts to hyperventilate. I know she does not know what she is doing and I feel badly for her. Here is the kicker however. At random she will get up herself out of her chair and get herself into the bed, legs and all!! Or I will suddenly catch her WALKING to the bathroom. So she can do all of this, she just will not. If I tell her she can she just yells, if I insist that she does it she simply will not... She even yells at my kids to pull up her pants etc... She almost likes this, she has everyone jumping night and day. 3 of my kids are teens and my 13 year old daughter helps her a lot and my grandma responds better to her then she does to me. But I also have a four year old who loves to, "help" yet my grandma is turning her into a SLAVE. Things my grandma can do herself like reach her drink from the table while she is in the chair she is now calling my four year old daughter to do it. The worst yet was I was in the kitchen and my grandma and four year old were watching tv in her bedroom. Then I heard my grandma shouting at the baby. I went in to find my grandma standing by the commode ordering the baby to take down her pants, my daughter LOVES to help so she was trying. That is just sooooooooo WRONG. She has completely lost her senses. Up until about 4 months ago my grandma did everything for herself for the most part, she treated the baby like a baby, spoke to the kids and still saw me as a child. Now we are all just slaves.
If I do not find a way to get her to sleep she will end up in a nursing home. That is the last thing I want. Any advice would be welcomed.
Bonni

Bonni, welcome back, sorry it has been so hard going for you, your gran, and your family. Your babies (and not such babies) are amazing people, and so are you. I am sorry that it seems you must choose now between them. That is not a choice really. Your babies must take priority.

The right meds, even if for a UTI, must be decided by the docs. For them to see what they need to, you have to back off. Yeah, I know, easier said than done. I have holes in my tongue from biting it when the neurologist questions Mom. He does not want THE answer, but HER answer when he asks a question. For any of us who have an ongoing history, we have records of what med was prescribed when for what, and how it worked. The pharmacist (if you get her meds from the same place) can provide you with a prescription history. S/He can't tell you if it was affective, but can give you dates.

Sometimes keeping our LO at home is no longer possible. You have my admiration for exhausting all ends on your gran's behalf.

Truely I hope the neurologist can help, but if they tell you an in-patient evaluation needs to be done, you need to let it happen and walk away.. Best of luck, Bonni. It ain't easy, and I can't predict the outcome for you, but your 4 YO is too young to be changing Grans diapers, and you clearly stated that. Good call, on your part. Let us know what the doc says please.

quote:

It is such a hard thing because my grandma cannot even stay in the hospital unless I stay with her

I hear this so much Bonni I even went through this with MIL but you know what thats what hospitals are trained to do deal with unruly patients.
Honestly its not going to kill her lets just take that off the table shes going to get agitated yes but they have meds at their disposal for just this issue please do not fore go an inpatient stay because of this hun you need the rest pure plain and simple cause anyone of us here can imagine just how you feel we have all been up countless nights no sleep tending to our LO's but we all realize if we allow this to go on indefinitely we will get sick then who is going to care for those that need us most?
My MIL screamed an entire 3rd floor down for 3 days and nights straight till they found a med that worked for her, did my heart break hearing this? You betcha but the alternative wasnt working for her so the hospital is where she stayed and I got some MUCH needed rest not to mention my husband and neighbors
When they get to this point there most likely is a reason behind it and Dochka brings up a good point is this type of behavior recent could there be a UTI? Have her checked out while your at it.

I honestly that a med to help her sleep is the way to go, my mom is on serzone for that problem.

Also Urinary Tract Infections which are soooo common in the elderly, can create some very CRAZY behaviors!

In any event the doc should be able to help with these meds. To me they are a miracle!
But needs constant surveillance by you and the doc to be balanced.

Thanks for the kind posting. I just made her an appointment for a neurologist yesterday as a matter of fact. Maybe that will help. It is trying at times but there is joy in it as well..

I cannot afford and agency and she gets no government due to income yet after the cost of everything and paying a day nurse there is nothing left. Her day nurse was from an agency and now has been with us 6 years. She is GREAT! This new business with night nurses has been horrid and an agency here wants 140.00 per night for a non-sleeping person!

First, Bonni, let me say I hear ya about the need for regular sleep! Have you consulted with her physician about this? There are meds out there which will help her to sleep at regular intervals - but the trick is finding something that works for her and doesn't agitate her or leave her woozy and a fall risk... Please call and make an appointment with him/her for yourself to discuss this! Sometimes it's best to go to the doc alone so that you can talk freely without having her present. I don't know if she has a geriatric specialist or a neurologist, but they would be the best choice for treating this special kind of elderly dementia. If she has not had a geriatric psuch workup, her doctor could order one. This usually takes about a week or two and requires an in-patient stay in a locked down geriatric psych ward. The staff can start her on meds there and if she becomes unmanageable, they have the meds needed to calm her down and adjust from there.

We all know that YOU cannot go on this way indefinitely... besides falling over and smashing your face, chronic lack of sleep has all KINDS of other effects on the body and mind as well. Pick up the phone and call the doc today! Who knows - you may get lucky and hit on the right drug for her on the first try and get a good night's sleep! What would THAT be like, eh? Facing PT and/or surgery means you will have to hire more help as you will be out of commission sometimes... I dunno if your previous sitters were hired through an agency, but if not, it really pays to do so. The employees working for agencies are vetted and trained so that the behaviors some sitters find impossible with which to deal are not a surprise to them.

I know that you know that she can't help her behavior. Sometimes, they can put it all together and do for themselves and sometimes they can't remember how... It's NOT a place where reason lives... Don't bust your brain trying to figure out why - just accept what is in the moment and do your best.

Please realize that there are some patients who, despite our best efforts, simply cannot be cared for at home because their behavior is uncontrollable and is adversely affecting the lives of too many people for it to be feasible. I know how hard it would be for you to consider the nursing home option, so DO keep working with the doc to find a med or combination of meds that will work for her, but realize that if you have to place her, you have not failed her! Sometimes that is the only option left to us to insure that our LOs receive the care that they need in an environment where they are protected and cannot overwork any one caregiver.

MANY blessings to you, dear, for the loving care you and your family are giving to her! Dealing with dementia is a special kind of caregiving and your gram is a fortunate woman to have so many folks around her to care for her despite her impaired behavior. Please keep us updated when you have time about how she's doing and especially about how things are going for YOU! {{{HUGS}}}

Thank you both for your replies.

It is such a hard thing because my grandma cannot even stay in the hospital unless I stay with her. That is even harder then staying up with her at home. The last time she was in the hospital and I left to get a few hours rest she ended up tied to the bed , they were getting ready to sedate her but called me in instead. She only connects with this world through me for the most part even though she knows my kids as well. She cannot speak to anyone without staring at me . This has been going on for over 7 years now. A home would kill her, even for a week. It is all so very sad to watch.
Bonni

Bonni I hear you loud an clear I went through the same thing with my MIL here Your Gran is Sundowning and really this is a poop shoot when it comes to medication the only thing that halfway works for MIL is Trazedone....I said halfway though she still yells at night.
She goes through exactly what you explained, sleeps an hour and is up the rest of the time no matter what we did.
The meds just dont work and if they do its only for a short period of time but the higher the dose or a different med has its hazards also where they can not ambulate without assistance.
My best advice is to get her PCP to have her re evaluated with attention to the meds she is on. A Geriatric Psych Evaluation
This will give you some much needed respite and a little time to think about what you want to do next.
My MIL is now in a Board and Care facility, to be honest she posed too much of a safety risk to keep her in the home any longer and frankly speaking lack of sleep like you are describing becomes more of a hindrance to us.
I was also keeping your hours and yes even getting snippy with everyone.

I sincerely hope you feel better Iv taken a few for the disease myself and their not fun but I believe its a wake up call although....did it hafta hurt so much?!
And excuse me a commode?! Oh boy have I been there Arg all over da place
Please take care of yourself sweetie theres only one of you!

We've experienced the helplessness one day, and ability to climb stairs unassisted the next. It's the odd nature of dementia.

The night wakefulness is typical as well; it's called "sundowning." Our LO was initially given remeron (an antidepressant with the side effect of drowsiness) and when that ceased to help, a prescription for ambien. These medications have their own set of problems, e.g. daytime grogginess resulting in falls. You might talk to her doctor about this night agitation, though.

If it's really intense, you might consider a short term of respite care at a nursing facility. For that matter, it might do grandma some good if the doctor can order daily physical therapy while she's there.

When they've been sick or injured, they are always more confused and ornery. Some of it may improve over time, but I agree: you need to protect your babies. Grandma would agree if she were in her right mind.