Follow
Share

This isn't going to be a Readers Digest version, sorry. My Mom, who just turned 80 today, was officially diagnosed with Dem/ALZ 4 years ago, just 2 years after her being told she beat breast cancer on her 2nd bought (had a mastectomy). I probably ignored some of the signs because she retired from working a year before that and I just thought she was just trying to get used to that, probably-maybe. ALZ runs in my family (Mom's side) and this is the 5th time I've had to do this since I was 11 y/o. Just to preface, major changes; cog/phy; all happened after an afternoon nap - or as we called it , the hour of change. First time was my great uncle who lived only a block away from my grandparents and I used to go over there to help my Grandma take care of him. His wife had terminal cancer and passed within a year of diagnosis. That lasted for 4 years til his death; due to ALZ. About a year before his death, my Grandpa stated his mental decline due to Dem/ALZ with suddenly wandering outside at all hours of the night in any weather in his underwear. The next change,about a year later, was having issues with incontinence which then progressed into verbal abuse. After he started getting physical with us, we finally had no choice to put him into a nursing home. Literally, within a couple of months, I was the Only person he remembered. It devastated everyone; understandably so. He stayed like that for nearly 2 years til he passed away from complications from the Dem/ALZ in '83 when I was a senior in h.s.. A couple years later my Grandma had a heart attack and was heavily medicated for about 6 months after that and suddenly, again after her afternoon nap, she woke up and had a hard time with remembering anything. If she saw pics from 15 years before, she could remember who everyone was but the next day, we had to start all over. Again, she had no issue knowing who I was, which is a pattern I do Not understand. I had 12 years off while I was married but my job at the time caused my divorce 8+years of 21days straight-16hrs/day and on the afternoon shift. Soon after the divorce, my aunt started showing signs of Dem/ALZ by getting lost for hours going back and forth from the store. The last straw was when the P.D. from a town 15 miles away called and I had to bring my Mom with to drive her back home (that's when my Mom was going thru her first battle with breast cancer). About a year later, again after her afternoon nap, just 3 hours after taking her and my Mom shopping for clothes for an anniversary party, we pulled in and "Lucy" was balling on the porch. My aunt didn't remember her, she has been part of our family for 60 years at that time, or my Mo but again; remembered Me and was asking for Me. She said she couldn't walk, those 2 ladies; my Mom and "Lucy" hid her wheelchair and took her money. My aunt didn't have an issue walking and her money was in her drawer like always. I dealt with that til it was too much for "Lucy" and Me and she was put in a home about 3 years ago. She cannot remember anyone or anything. Now it's Mom. She constantly complains - almost Every sentence. She's up 20 hours a day and can fill up my voice mail, 125 messages, in 3 days. For the last year, if she's up I HAVE to be down there. If I'm not, she calls NON-STOP and leaves a message. From the time I go upstairs to sleep for work 3-7p, she'll call every 10-15 min and leave a message. That's on those day when I pass-out out from Not sleeping for 2-3 days straight. Yah, Maybe 3 1/2 hrs sleep/day to drive overnight for 12 hours. This has been going on for the last year and within the last 3 months has caused me to take at least 1 night off/week basically negating any O/T for the week (the policy, even with FMLA, is that once you've used up your 7 vac days and 7 sick days you lose O/T pay for that week). So for the last month I've been lucky to get 40 hours. My 2 younger brothers are no help at all. I mean, I'm 51 now, and at even at 25 I couldn't work 3-12's without sleep even with a desk job, so I have NO idea where I'm getting the energy from. There is no help from home care services since they don't do weekends. I Must have help Fri-Sat-Sun from 2p-6p since she is allotted 12hrs/week from the state but there is no service available. Both her GP and Neurologist want me to get a Fitbit and bring it in to get connected with Their monitors. When they said that, I got scared! My ex-gf, a retired psychologist, said that they think I'm going to have a heart attack or nervous breakdown. I know that I get frustrated easier now than ever before but I haven't started hitting the bottle or punching holes in walls yet. I have noticed that I don't want to do anything but sleep if she's quiet so I don't have to deal with her griping and bitching about everything for just a few hours a week. A.L.C. are out because they are $5K/mo. I just have nowhere to turn for relaxation...None. What's left as options?

This question has been closed for answers. Ask a New Question.
@talkey I just saw an article in regards to that. I've been living back here; as I stated originally that this was my Grandparents home (converted into a 2 unit when great-Gram go really sick so she could stay at home) since my divorce in 2001 and that was a few months after my Mom started her second of 2 battles with breast cancer which lasted 2 years and really took it's toll on her; physically; but she finally beat it. I've been paying all the bills here for the last 4 years since my Mom retired and was diagnosed with this Horrible disease that unfortunately runs in the family. Mom wants to go to a lawyer SOON for a will and to get the house put in my name. She finally realized that if she gets worse the lawyer won't do it because he might think she's not doing it on her own accord. So far her best days are Tue, Wed & Thur; which are my Sat, Sun & Mon since I work 3rd shift and my sleep schedule starts at 1 pm on Thu. I think it's basically that her days seem normal when I'm here and being able to make dinner and eat with her like a normal person, and by normal I mean Me and working a normal 9-5 job.  I hope she holds on to those day for another week til we get to the lawyer; actually I hope she can fight this for a long time. It's a mindset and I keep telling her to fight it every minute. Don't go right into getting mad and lashing out. Ask the question then write the answer down if need be so you can reread it over again when you need to know it an hour or so later. She finally did that yesterday and it seemed to help her. She still Despises having a a home nurse in on Fri-Sun for 4 hrs/day, she calls her a babysitter usually, but she's reluctantly getting used to the lady; she's my about age, about 49; and they were actually laughing yesterday for the first time in 2 weeks. I know it's an uphill battle for me and a downhill slide for her but I'm trying like hell to make her as comfortable as possible and trying to get her to fight it everyday instead of getting mad and arguing about everything she cannot remember.
Helpful Answer (0)
Report

I'd check into Medicaid and get her into a SNF with an Alz unit. If you can show that you've been caring for her for 2 years prior to needing Medicaid, I think there's some sort of waiver that allows you to stay in the family home. Perhaps others here can weigh in on that. Just seems like she's a f/t need, and you just can't be available f/t.
Helpful Answer (1)
Report

Sonny--

You HAVE to sleep. Seriously. You will die before mom does if this continues.

Her behavior should be evaluated and dealt with ASAP. I know she doesn't WANT to go in a home, but that's where she needs to be. There are plenty of facilities, but you will have to do some searching and work to get her in one. She'll be mad, for sure, but she's not happy now, right? She's ABUSING you and since you live with her (that tidbit cleared up a lot for me--no wonder you can't sleep!!) you can't escape.

You certainly have the corner on the Alzheimer's knowledge. Use that to your advantage. You will have to be mom's advocate to get her placed.

You are NOT crying over spilt milk--you have a serious issue here. For one thing. if you're not adequately rested how can you possibly drive for 12 hours with any degree of safety??

Even if you have to sell the home to afford private care for her--(whose name is the house in??) and you live in a small apartment, would that not be better?

Time to take care of YOU. Please! In fact, next time you are "off" check into a hotel, turn off your phone and sleep for 24 hours. Let somebody know mom is home alone, and GO. Sleep is so important---and you really sound completely burned out.

Keep posting here--there are some amazing caregivers here with great advice.

{{Hugs}} cause you REALLY need some!

BTW--do you have POA for her? Without question, if she is as bad as you say, you now have the responsibility (right) to make decisions for mom.
Helpful Answer (3)
Report

She was diagnosed 4 years ago with Dem/ALZ. Emergency respite care was and has been used up already; 40 hrs/yr and that was back in Aug. Since I drive 12hr/night for work and I have a non-standard work week, Thu-Tue 10p-10a, I need someone on the weekends from 2p-6p Fri-Sat-Sun so I can sleep instead of being up for 2 or 3 days straight then having to take a night off. I recently found out that taking a night off means I not only lose that days pay but All O/T for that week becomes straight time, so I'm lucky to make 40 hrs/wk, and that's been going on for the last 3-4 months. There are 4 agencies in my area that are supposedly "certified" by the county and state to do home care. The certification requires them to have staff available for whatever hours are needed. Only 1 does weekends, but the hours I need help; which is the late afternoon on weekends; is nearly impossible to find someone to cover. My/Her case is considered and extreme case and we are allotted the most hours/wk, an entire 12hrs of home care/week. Yah, an Entire 12 hours/wk; what a joke. The house was built by my great-grandparents and it's a 2 story home that has been added onto (insert boring family history here), she lives downstairs and I live upstairs. If she sees my car and I'm trying to sleep for work, which I have 9 notes on a full sheet of paper taped to doors all around downstairs, she pounds on the wall or starts slamming doors til I come down and stop her. I turn off my phone but she leaves 20-30 messages within 4 hours and in 3 days my VM is full! Basically, she's throwing a tantrum to get me down then says; "Well you're down here, you might as well sleep down here." NO! I take 2 sedatives to TRY to sleep for just 3 hours. I never could sleep during the day and this is just pushing the issue. I'm trying my best to find another job but I'm Very hesitant because she's going to get worse and it's going to take up more of my time. I mean, how can you get another job when you know you need to tell them you need FMLA right off the bat, at least 1 day off every other week for Drs. apt. and expect them to say: " OK, you still have the job" on top of the fact I'm going to turn 53 this year! I know I sound like I'm crying over spilled milk but WHAT ABOUT ME? I'm having issues finding time to look for a job. Even IF I bring my laptop down there, when I'm on it she complains Even more that I'm ignoring her and that's On Top of her never ending moaning and groaning. Lately, she's even tried to take it off my lap for that same reason. She's acting like a spoiled little entitled girl. It's useless to explain because she either doesn't get it or forgets after an hour. This has been going on for almost 2 years.
Helpful Answer (2)
Report

When you're supposed to be sleeping, unplug your landline and switch off your cellphone. Nothing awful will happen to your mother that could be prevented by your answering the phone.

With your family's history, if I were you I wouldn't want to muck about with sleep deprivation. Your poor brain has enough risk factors without your doing that to it. And that's assuming you don't fall asleep at the wheel of your car long before dementia becomes an issue.

Meanwhile BB and LFG have given you two very good starting points to find more help for your mother - please contact them today. Feel better, and hugs.
Helpful Answer (8)
Report

Thank you so much for sharing, i too am feeling very overwhelmed. Is she diagonosed? I ask beacsue the alzheimers assocation sent me an appliacation for respite care. Paid for through some grant. It did seem to be inome based.

not sure your medial coverage, but Kaiser helped me to get everything started for my grandmother.
Helpful Answer (1)
Report

Have you applied for Medicaid for mom?
What are her resources? Has she had a " needs assessment" from the Area Agency on Aging in her County?

Have you consulted with a geriatric psychiatrist about meds for her anxiety and agitation?
Helpful Answer (4)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter