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Feeling Stuck in Dementia Prison
Posted: Tuesday, January 21, 2020 6:52 AM
Joined: 9/17/2018
Posts: 2

     My mother is currently not diagnosed as I couldn't get her to the doctor. We do have an appointment in a couple of weeks, but I'm not sure I can get her to actually sit with the doctor at this point. My not professional opinion is that she's got somewhere between stage 5 & 6 dementia/alz. 

     My main issue right now is that my mom lives with me.  I'm 38 years old and also live with my husband and my 9 year old daughter.  We'd like another child very soon as I'm not getting younger.  My mom is getting increasingly difficult to manage.  She's moody and mean (mostly to my husband).  It's causing marital issues because she adds so much tension to our home.  I absolutely hate that my daughter is stuck living in this tense situation.  Some things my mom does can be ignored, but when she puts something in microwave for 10 minutes, we have to run and stop her which of course makes her mad. 

     Yesterday, we went to take the dog to the vet.  While we were gone, she wandered off and was gone for 10 hours.  That was a first. Someone found her but it was a long, stressful day.  She doesn't remember it and says I must have been drunk if I thought she was missing. 

     I homeschool my daughter, so I'm home most days.  In some ways this is good.  In other ways, it's awful.  She interrupts us constantly to ask the same questions over and over again.  I have to stop her from eating all of my child's food and snacks (and I don't even usually catch her).  I'm constantly cleaning up after her as she leaves trails of crumbs and smeared peanut butter etc.  I'm running out of places to hide food.  My daughter is losing her patience with grandma.  It's hard to blame her.  Sometimes, my mom will play nicely with my daughter.  Sometime she's mean and I have to come in and basically tell my mom to go to her room.  I'm not going to punish my kid because grandma can't play nice... but then I'm the  bad guy.

     It's a million little things that add up to me being so stressed by the end of the day.  To add to it, I feel like I can't leave.  We have at home care for days we know we'll be gone for a few hours, but like, if I want to take my daughter to Starbucks for an hour because she did amazingly in her least favorite subject, I have to take my mom and then it isn't any fun because it's all about grandma.  If I leave her, I risk her wandering, setting the house on fire, losing the dog, stealing our stuff  AND she throws a massive hissy fit because she can't go. 

She's not a vet.  She doesn't have any insurance.  She has some money in the bank but maybe enough for a year of Memory Care.  We're not poor, but I don't make enough to fill in the gap for her and still take care of my own responsibilities. Full time care is basically just as expensive. 

Truth is, I need her to go somewhere else.  I need someone else to take care of her.  I need my house back.  I need to be my kids mom and my husband's wife.  But there are no options because there is no money.  I live in Florida and Medicaid won't pay for Memory Care.  I just feel stuck and I feel like my family is stuck with me.  If you made it this long... I'm mostly venting but also hoping someone somewhere has an idea I haven't thought of.



Posted: Tuesday, January 21, 2020 7:11 AM
Joined: 6/24/2012
Posts: 576

So, there are options.  If you call the hotline for they can help you with some first steps in searching for help.  They won't make the calls for you, but they can tell you what kinds of assistance might be available and how to start the process. 

As to the doctor visit... that was my dilemma.  I did actually get her to the neurologist, but she refused to cooperate with him and walked out.  If she wanders, you can involve the local police and EMS next time (God forbid) and they can take her into the ER for an evaluation for geri psych eval.  Maybe.  

Next, for now at least... get someone to help you.  When you go out at night you need a baby sitter for the kids... you need someone to mom sit.  Just that little bit of relief will help for now. Yes, this is going to be expensive, but most nursing homes accept medicaid.  And some MC units actually have 'affordable' units based on a sliding scale of income.  

I understand the 'all about Grandma' thing.  Any holiday with my kids turned into 'all about Grandma' for years.  Your daughter deserves some space from this (and so do you).  

Good luck.  

Posted: Tuesday, January 21, 2020 7:31 AM
Joined: 11/22/2019
Posts: 292

I also recently learned that what I have been calling Memory Care is not covered by Medi-Cal (medicare in CA). I met with a Certified Elder Law Attorney (CELA) recently and was enlightened.

My mother is currently in a board and care with other residents, some of whom have dementia too.

Until she requires skilled nursing care, which Medi-Cal will pay for, I have chosen to leave her at the b & c and supplement with a companion/caregiver to help provide stimulation and enjoyment on days I cannot visit.

My mother's experience with dementia has included some violence, poop-flinging, wandering at night (she uses a wheelchair), combativeness and anger.

Having a stable environment and medications prescribed by a neuropsychiatrist who specializes in dementia has calmed her tremendously and her quality of life is greatly improved.

I had wanted to care for her myself in my home, but learned that her needs outweighed my ability to fulfill them.

It isn't the best I can imagine for her, but it is the best possible at this time.  She is safe, she is monitored and prevented from wandering, she has excellent nutrition and delicious food (something she glories in).

Her income nearly pays for her monthly rent, so my costs are not astronomical.

There is a topic about placing your LO not too far down in the list.  People share there how they managed placing LOs who were not pleased with being placed.

And, welcome.  I am sorry your mother is so ill and you are exhausted.  But I am glad you found this resource.

Last week, I learned that there is a caregiver's support group meeting locally that also provides respite care during the meeting.  Perhaps there is such a meeting in your area, or perhaps you can get a caregiver to step in so that you can attend a meeting.

I found it extremely restful and informative to be among people experiencing the realities of caregiving.  I will be attending another Alzheimer's Association caregiver's meeting soon.  It was worth the time and effort to attend.

Posted: Tuesday, January 21, 2020 8:28 AM
Joined: 6/24/2019
Posts: 82

Hi LooLoo - I feel you.

I, too, care for my MIL. I have a 17 year old daughter in the house that MIL constantly accuses of stealing from her. In reality, we've found things of my daughters in MIL's room. Yet we are lying and accusing her of being crazy if we say anything to her. We've made an appointment with a neurologist in March for MIL but we aren't certain we can get her there. We need some sort of diagnosis so that we can get services lined up. Like your LO, my MIL doesn't have any insurance other than Medicare and has no income other than SS...she also has absolutely NO assets other than a few pieces of cheap furniture and a few hundred bucks in her checking account. I also feel trapped here most days, though I do work part-time. When we do go out our adventures consist of whatever she can do and it isn't fun for our family. Our daughter will graduate in May and we've booked a celebratory vacation that does NOT include MIL and I hope we can find one of DH's siblings that will host MIL for the 3 weeks (one week before vacation, the week of the vacation, and the week after) we need MIL to be gone.

Posted: Tuesday, January 21, 2020 8:48 AM
Joined: 3/25/2015
Posts: 687

LooLoo5, Reading your post makes me hope and pray that I never get a brain disease that causes such awful behavioral symptoms, that it "ruins" my children's lives. 

My mom had dementia too, but there was very little nastiness from her; lots of symptoms, lots of stress for me but at least she wasn't mean AND thankfully I was able to place her; she never lived with me, nor me with her. I couldn't have done it.

You need to try to place her. Consult an elder care attorney about how to make it happen. My mom never went to MC. She started off in AL and then went to SNF. This was all private pay. However, the SNF would have taken Medicaid funding if she ran out of personal funds.

King Boo
Posted: Tuesday, January 21, 2020 9:24 AM
Joined: 1/9/2012
Posts: 3326

For the time being, send her to Adult Day Care.  Gets her out of the house and lets you homeschool and have a least some time alone with your daughter.  Many have sliding fee schedules.

Many of us have a window of oppportunity open up when our family member with dementia has a hospitalization.  When that happens, tell the admitting social worker your mother is NOT coming home with you and needs a long term care placement.   If you are  prepared with your first, second and third choice of a  nursing home for the rehabilitation stay (at a facility that also has long term care Medicaid beds) or a facility that will take her private pay with what she has $$ in Memory Care and then move her to their own nursing home on Medicaid is a good strategy.

Try to find a community that has both as well - it's harder to get into care with no financial resources sometimesssss.  Not impossible, but harder.  A Medicaid facility is likely to be open to having a patient who is at least private pay for a while than direct on Medicaid, though exceptions exist.  

Don't let Mom's care stop you from TTC.    Been there, at 38 this is a goal for now.

There may be other options for immediate change in care.  If there is an elder law attorney CELA they may have insight and a strategy.  

BTW, exit seeking/wandering is often a trigger point/crisis for placement.  You can't be all things to all people, dementia can take a whole family down.

Also, a geriatric psychiatrist can help with mood mediction which temporarily could assist the in home situation until change is possible.

Eric L
Posted: Tuesday, January 21, 2020 10:48 AM
Joined: 12/5/2014
Posts: 1290

I'll spare you the long version of the story, but fill in a few details. We moved in with the in-laws almost 8 years ago. It was supposed to be temporary, but shortly after we moved in we found out that our 3rd kid was on the way (total surprise by the way, we had tried for a couple of years and it didn't happen) so we decided to extend our stay a little bit longer. A couple of months later, FIL was diagnosed with pancreatic cancer. We also noticed that MIL was having a few memory issues. Enough to concern us, but they were just blips. With the baby on the way, FILs diagnosis, and MILs pending issues we decided to make our stay a little more permanent.

Thankfully, MILs dementia hadn't progressed too much by the time the baby was born. She was certainly having memory issues, but her personality largely remained the same. She was a bit more paranoid about stuff (she was reading some really charged political stuff at the time and was certain society was going to collapse), but she was still a rather pleasant person to be around and thoroughly enjoyed being a grandmother. She was still able to watch the kids. The cancer had forced FIL into retirement, so he was around all the time as well.

By the next school year, I was really hating my job. I decided to take a break and stay at home with the kids. It worked out well because FIL was getting sicker and MILs dementia had progressed to the point that she really wasn't able to watch the kids anymore. As an aside, knowing what we know now, I should have started staying home the previous year (she had enough cognitive reserve to mask her symptoms). By the time that Winter Break rolled around that year, MIL was no longer driving and we had started the formal diagnosis process. Even then, she was still mostly pleasant to be around (maybe had a shorter fuse, but was still herself and enjoyed spending time with the kids).

As her dementia progressed, her mood totally changed. She wasn't pleasant to be around. Thankfully, she was still pretty good to the kids when she had the awareness that they were around. Towards the end, she got mean and cussed us (my wife, her brother, and I) a whole bunch, but she never really had any outbursts towards the kids. Of course, her outbursts were not good for the kids to see and we did take steps to remedy that.

So, my post ended up being a little longer than I had intended (the story of my existence on these forums). As someone who has kids and lived with PWD, I will just say this.. given your mother's current issues, there is no way in heck that I would attempt to have a kid while she is still living with you.  We were pretty fortunate that MILs attitude really didn't turn completely sour and sideways until our daughter was about 4. It would have been an absolute nightmare to have a newborn when MILs demeanor changed. Heck, we were exhausted all of the time because of her and I can't imagine how we would have managed with MILs issues and the normal exhaustion of having a newborn.
Rescue mom
Posted: Tuesday, January 21, 2020 10:57 AM
Joined: 10/12/2018
Posts: 1594

King Boo made excellent points. You cannot sacrifice your family; your mom has an incurable disease (assuming she indeed has a dementia). It does not get better.

You now need to watching out for your daughter. Adult day care first for mom, then placement. The day care staff are usually accustomed to “reluctant” clients and have lots of techniques to help encourage her to stay.

You need to get to an attorney and find out how to get her on Medicaid. It can be done, and there ARE many very good care  facilities in Florida that take Medicaid. Your local Alzheimer’s Association can help you find what’s available near you. 

But you have to go through the process of getting her into Medicaid, which may require that you “spend down” any assets she has, first. (Not your assets, hers). That Medicaid process really needs an attorney to help you through, though. Some people have done it on their own, but it’s very detailed, with a lot of “ins and outs” (especially in FL) and given the time and legalities, an attorney is well worth it.

If she wanders and/or ends up in an ER, ask for a social worker to help you.

With the upcoming doctor visit, try to make contact with the doc or staff ahead of time and convey your concerns. You may not be able to talk to the doc ahead, but maybe email? Or at least have a written note to give to the staff/doc when you get there, before she goes in.

Do you have POA or control of her finances? Be alert for scammers or unusual spending.

You already know that running off like that can be very dangerous for her. If it happens again, it might be a way to get her into an ER and get more medical help, and maybe a social worker or psychiatric help. Medications may make her calmer, although that’s generally last resort, but you sound like you’re at that point.

Again, your local Alzheimer’s Association is a good place to start finding resources and advice, and it’s free. Just google for your city/area office number.

Posted: Thursday, January 23, 2020 11:22 PM
Joined: 1/23/2020
Posts: 2

OMG! Are you sure your not talking about me?!?! I also homeschool my 7 year old, and we go through the same thing. Keep your head up buttercup! You got this!!!!