Parkinson's with dementia-Need

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My mother is 69 years old and has been battling Parkinson's for the last 15 years. In the last year, she has also developed dementia and while she is partly lucid (for example, she can tell you what medications my father takes and what they are for and how many milligrams, etc), she insists that my father (who has Vascular dementia) sneaks women in the bed at night with them, and that the women are trying to kill her, etc... She yells at my dad and insults him and cries non-stop until she finally falls asleep for a couple of hours and then wakes up and tries to get off the bed (she can no longer walk). I recently moved in to care for both of them but I need suggestions as to how I can calm her down when she gets like that. I am exhausted (on top of that, I have 2 children, a teenager and a toddler) that I am also raising... So any suggestions or advice as to how to handle these episodes so that both of them (and myself) can get a decent's night rest. Thanks!


What meds is your mother taking? Does her doctor know about these psychotic episodes at night? If not, the doctor needs to know and he or she might have a drug to give her a night. How does your dad respond to your mom's insults and yelling? Does this happen every night? How long have you and your children had to live with this nightly drama? How is the teenager dealing with all of this drama? How old is your toddler and how do you perceive this drama and home environment is impacting them?

In my opinion, your mother needs to see her doctor for an up to date evaluation with the doctor informed before hand with the information that you have shared here, plus tell the doctor your own situation in now living at home with a teenager and toddler to raise and it would not surprise me at all to hear them say that you are over your head with your mother's medical condition and needs and she most likely needs to go to a nursing home at this point. My gut reaction to her thinking other women are getting in bed and trying to kill her is that on some level she wishes she were dead. I think the poor woman needs more professional help than you can give her and you need some freedom in order to also raise those children. It does not sound to me like anyone is getting a decent night's rest.
Also, I sure hope that you already have medical as well as durable POA for your mother and father. I wish you well in dealing with all of this mess.
Can your mom and dad sleep in separate rooms? Maybe then at least Dad would get some sleep. If you and your two children have moved in, though, I'll bet extra bedrooms are scarce.

Is mom seeing a specialist in Parkinson's Disease with Dementia (PDD)? Explain the night problems. There may be medications that will calm her down at night and enable her (and everyone else) to get some sleep. My 85 yo husband has Lewy Body Dementia, a very similar pathology to PDD. The sleeping problems at the beginning of the dementia were a huge obstacle to keeping him at home. I could not be his caregiver on such limited sleep! Fortunately that problem has been resolved with drugs and he is still at home 8 years later.

Work on getting help to enable your mom to sleep through the night. That would be the first priority and the best solution.

Another option is to bring in paid help for the night shifts. You CANNOT take care of a toddler, a teen, and two demented adults with insufficient sleep. This does't solve poor Mom's sleep deprivation, but it does give the rest of the family some healthy sleep.

The fact is, I don't know how you are going to care for a toddler, a teen, and two demented adults even with enough sleep. That is a HUGE responsibility. You must start now to arrange for help. This could be things like caregivers coming into the house, one or both of your parents attending adult day health centers, homemaking services such as cleaning. laundry, errand running, someone to help them with showers, etc. Or it might eventually mean placement outside of the home.

Unless your parents were fairly wealthy, this will mean applying for aid such as Medicaid. Do you parents have a case worker now? If not, you need to contact social services and get that ball rolling.

I hate to add things to your to-do list, which must be miles long, but
1) get in touch with mom's doctor regarding sleep problems. A solution may take some trial and error, so there is not likely to be an instant success.
2) get in touch with your parent's case worker, or start the process of getting social services involved
3) accept that you may be SuperMom and SuperDaughter but the likelihood of retaining your sanity while playing both of these roles with no stuntman or standin is very slim. Start now to arrange for help, while you still have enough wits about you to handle that challenging task
4) come here often to share your successes and vent about your burdens and ask for input on your challenges.

My sincere best wishes to you as you live your love for family.
Teresa, cmagnum and I were typing at the same time, with pretty much the same view of things. :)

I don't know if sleep disturbance is common to other types of dementia, but I can tell you that is it extremely common in PDD and LBD. Hallucinations, delusions, and paranoia are also common. What is different about these behaviors in PDD and LBD is that they frequently occur early in the course of the dementia, whereas it is more common to see it in the end stages of some other dementias. As you say, your mother is still fairly lucid, and yet she clearly has dementia. Memory loss is not nearly as prominent in most cases of PDD/LBD as it is in Alzheimer's, for example. You are dealing with two different kinds of dementia, and the symptoms and stages will be different. Another thing to add to your overflowing to-do list is to read up on the specific kinds of dementia they have.

You are parenting children in two very different stages of their development. You are caregiving parents with two very different forms of dementia. You deserve and need help. The four people who depend on you deserve and need for you to have help. Even figuring out what help you need and arranging to get it is a large task.

Hugs to the five of you!
Thank you ALL!!!! Last night was a particularly bad one and her episode lasted well after 2am... I have spoken to my brother and we definitely have to get the dementia under control even if it means she has to take meds that she may not WANT to take (which is part of the problem). So we are making an appointment first thing Monday morning to get her meds adjusted. We also have a social worker coming in a week to discuss options on getting more help for me to be able to deal with them. It is not only mentally tasking, but, physically draining because I have to lift mom a lot during the day... I realized before I made this decision that I may be biting off more than I could chew, but, I just couldn't have peace in my heart if I didn't at the very least try. If the arrangement doesn't work, then, we may have to go the nursing home route, but, at least they will know that I tried my very best! I am definitely going to keep checking in here. It really helps to know that I am not the only one in this situation and that they get as frustrated as I do sometimes too :)
I am so glad that you are taking action. If the doctors have some drug suggestions and Mom doesn't "want" to take drugs you may need to lay it out plainly for her. You are very willing and eager to keep her in her home, but she has to do her part, too. My husband was used to taking drugs for other things, so he didn't resist more medications. What he didn't want to do was go to the adult day center. I waited for a particularly "good" day when he was lucid and explained that if I was going to support us and keep him at home, I needed some days I could go in to work meetings and make my own medical appointments, etc. without being concerned about him. He didn't agree that he couldn't be left alone, but he did understand that I was quite serious. I was taking care of him. He needed to do this to help take care of me.

You may have to have similar pep talks with your mom. Be very careful to never make the nursing home a threat or a punishment. This is not "If you don't do what I say I'll put you in a Nursing Home." It is "I need your help and cooperation so we can all live together at home as long as possible."

Hang in there! I admire your determination and your realism. You are going to do your best, and you know that is all you can do.

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