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Sundowners so bad/ wild women please help.

Boxer Mom
Boxer Mom Member Posts: 9
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Hello, My mother came to live with me just a week and a half before Christmas. She was on a memory pill, but while she was in rehab they took her off of it. They said it wasn't know longer helping her. So when she was supposed to have her follow up with her Dr once she got out, she had to see a NP instead. So I wrote him a note explaining to him about my mom having sundowners at night really bad. And that she refused to take a bath. And could be very angry at times, if she is made to do something. So he suggested rexulti to try. Well mom has been on it for around I would say 4 weeks now, she dosen't fight me with taken meds like she used to on it. Well the Dr gave me a sample packet to try, but when I went to get it filled it cost 435.00 for one month. And my brother has guardianship over her, and he has her on a very tight budget. So I called the Dr and asked them to put her on something else because of the cost. So they prescribe her serquel. Well last night she was up all night long. She never slept any. She talked the whole night long, because I went to bed at 1:30 ànd she was still talking. She woke me up at 3:30, 4:30, 6:00, and finally the last time was 7:30 this morning. She has slept about 45mins today at the most. And tonight was her first dose of serquel. And she is starting it again tonight. She took her pills at 8:15pm. And I helped her get her underware changed. She wears pull ups. And I always lay out 2more pull up's plus 2 more poise pads. So I'm in my living room doing some reading, and I hear paper being torn, like when you take off the paper off a poise pad. So I set a little while longer thinking she would probably finally go to bed.

So I finally asked her, mom what are you doing? She said I'm changing my pants. I told her she needed to get into bed her pants were fine. So again more paper tearing. So I get up out of my chair, I opened the door. And there she stool with her PJ bottoms on, and a poise pad stuck to the front of her pj and one stuck on the side. And her depends on the floor. I said mom do you have panties on. And of course she said yes. I said let me see, and when I went to look, she started to scream and told me she was going to call the law on me. I said mom you can't sleep in bed without underware. So I was able to get her back dressed again and put her into bed. I know more sat down, and she opened the bedroom door and out she came. She said she needed to talk to me. I said we will talk in the morning. I got her back in bed and she started that talking again like last night. My mom has always been high strung, but I've never seen her like this before since she has come to live with me. Has anyone else ever experance this with there love one before? She is like a wild women on steroids or something. She will get clothes out of the basket I've got them in. She will get clothes out of my dresser drawers. She sleeps in my room, as I haven't gotten her bed down at my house yet due to the bad weather that we have gotten lately. So I sleep in my recliner in the living room. And my bedroom is directly off of it. So I can hear everthing she is doing in there. Until I go to sleep, than I don't know what she is into, until I get up in the morning and then I find the mess that she has done .It's not even close to a full moon or anything. She even takes mirtazpine which is how I think you spell it. She takes it at bedtime. If I give it to her in the day, it knocks her out. But when I give it to her at night, then she is good for 5 hrs and she is up. I just don't know what to do. The serquel is 50mg dose, versa rexulti was only a 2mg dose. I'm tired already and I haven't had her very long. I don't know how people do it for yrs. The only thing that my sister and brother says is, I knew she was going to be a diffcult one to take care of. I thought well then if you think that then come give me a break. So far nothing yet. And I don't think they will either.

Comments

  • towhee
    towhee Member Posts: 643
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    Medications can be complicated. Rexulti is one where to start you gradually increase the dosage, and to stop it you have to gradually decrease the dosage or you can get agitation and insomnia as well as other problems. If a doctor is not really familiar with the medication they can miss this and sometimes doctors discount withdrawal symptoms, they do not have to live with them.

    Also, very rarely though, Seroquel can be ineffective or can backfire. Talk to your pharmacist and then talk to the doctor again.

    All of this could have been avoided if doctors just thought about long term cost and possible damage to patient care instead of using the latest short term drug company coupon. I have been in this position too, still angry.

  • SDianeL
    SDianeL Member Posts: 3,421
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    so sorry you are going through this with your Mom. Her meds need to be regulated. The best type of doctor to manage meds for dementia is a Geriatric Psychiatrist. Get a referral to one if you can. My DH had a bad reaction to Mirtazapine. The Geri Psycge doctor took him off of it immediately. It takes awhile to regulate her meds.

  • Quilting brings calm
    Quilting brings calm Member Posts: 3,274
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    edited February 13

    You aren’t going to like my answer. Your brother has guardianship and is strict with the money. Then your mom needs to be living with and being cared for by him. Or he can place her in a facility. Or you can go to court and ask for guardianship because she is living with you. Him controlling the money and being the one able to make decisions while you are the one actually dealing with her is not going to work. I’m sorry - I read your first discussion and I know your mom doesn’t want to live with him, but that’s the reality.

    In addition, you trying to take care of a person with dementia while dealing with your own issues isn’t going to be good for your health ( mental, emotional or physical).

    In terms of the medication- was it $435 a month because she has terrible insurance and it’s always going to be that? Or was it $435 a month because it’s the beginning of the year and she had to satisfy a deductible? Did you ask the pharmacist if there were any discount programs?

  • Jolove1967
    Jolove1967 Member Posts: 15
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    I don’t have much advice but I could tell you I went through similar situations with my mom. I was doing the work of three nurses for 2 1/2 years. My mom passed last week in hospice disease is progressive. I hope they can get your on medication that stabilizes her. Unfortunately, for my mom it was too late for any stabilization, but she’s no longer suffering and I’m at peace with that if you need any one to chat to, you can send me a message.

  • terei
    terei Member Posts: 976
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    Agree with Quilting. Your brother has control of her and her money…her should be caring for her unless he wants to legally transfer all the control to you, this is not going to work.

  • Michele P
    Michele P Member Posts: 549
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    If your brother is the guardian, he needs to take over her care. He can’t have it both ways. He can’t control what you do with your mother’s care when he isn’t the one caring for her. He isn’t up all night with her and living with constant stress. There is a big difference between being the one caring for someone 24/7 and being the one who does nothing but give advice. I would look into bringing in someone to care for her in your home and would put her on a waitlist in a memory care facility. If your brother is tight with money, he will not give you the support you need. This will have an impact on your health and mental well being. If your brother refuses to assist you with the help you need, I would recommend that you tell him that you can no longer care for her. Tell him to come get her! You are under no legal obligation to do this.

  • Lazuza
    Lazuza Member Posts: 25
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    edited March 2

    Yes!!! This is exactly what I was thinking when I read through this post.

    OP, have you ever cared for someone with dementia previously? It is A LOT of work. I am a personality who believes I can handle just about anything. If I knew now what I didn't know when taking my LO in, I may have placed her in a memory care facility from rehab several years ago.

    If someone else wants to control the purse strings, they also need to be caring for your LO. That other person has no idea how much work AND EXPENSE is involved in caring for your LO. I am so tired of hearing stories about siblings using their siblings to care for a parent and then expecting to control or keep some of the parent's assets for themselves. I'm an only child but I know several people in this situation.

    I will also jump on a soapbox for a minute and say that there needs to be serious reform over the financial laws regarding elder care and children of the elderly. The laws currently assume spouses will care for spouses and serve to protect a person from everyone else, including their children. However, what happens when the child becomes a caregiver? In my state, you must have 20K to pay an attorney to set everything up for you or you will get screwed. (I spoke to six attorneys and this was the AVERAGE I was cited - some more.)

    I have lost nearly everything I worked for with no government entity having my back in trying to care for a parent with Alzheimer's. I previously made six figures, had an excellent credit score, and didn't rely on anyone for anything. How is this fair????? In this extraction capitalism environment, no one will care…until the Baby Boomers with dementia are in the streets en masse because their kids can't afford to care for them. Or maybe the Baby Boomers and their kids in our case.

  • H1235
    H1235 Member Posts: 2,342
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    It can take a while to get medication figured out. The right medication and the right dose. Everything has to be tapered up or down and changes to medications need to be made slowly. I think we spent months getting it figured out with mom. I can understand that over $400 a month for medication may not be the best use of her money if her income is limited. On the other hand, your brother needs to be supportive. When mom lived with my brother (I have the DPOA) she paid him monthly rent and contributed to groceries. Caring for your mom is tough. The DPOA needs to be supportive and work with you closely. If you think that’s not going to happen I would suggest he start looking into other options for her care. Dementia itself is bad enough, adding difficult siblings to the chaos can make things unbearable. I know from experience.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more