My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

Just Breathe by Meredith Farmer

I got the call while I was on assignment in Tucson with a colleague. “I need to talk to you about your mom. She’s not fitting in.”

Of course she’s not.

She has Frontotemporal dementia.

She yells.

You knew this.

You accepted her knowing she would yell.

I hate you.

I returned to our table. We were having lunch. My face got tight. My mood had changed.

Still, I think I recovered pretty quickly.

Afterall, I had been to this rodeo before.

After mom’s stint in the psych unit, she was accepted into a dementia unit some 20-plus miles from me. I hated the distance, but it was the only nursing home that would take her. Medicare hates it when you spend too much time in a psych unit. The stay is costly. And, as a result, the psych unit, tries to churn you out of there ASAP.

This means experimenting on you with drugs quickly. Zoloft one day. Lithium the next. They find a cocktail of drugs to “stabilize” you and then off you go into the big, bad world.

The social worker at the facility spent some three weeks e-mailing and calling and faxing packets of information about my mom to various facilities around town. Not one would even entertain the idea of personally assessing my mother………….. The yelling. It was a serious issue. It disrupts other residents and can agitate them. Once they read that in the report, it was GAME OVER.

The social worker assured me we would find something. If not, my mom would stay at the psych unit……………. the idea caused me to lose sleep, but after a while, the notion was comforting.

Believe it or not, you adjust to lousy situations very fast. Plus, she was acclimating to her surroundings……………..

I hated the idea of moving her again, and after everything she had been through just to get admitted into the unit — 10 hours sitting in the Emergency Room, sticking something into her urethra just to get a urine sample — I just wanted her to have some peace and quiet. I wanted some peace and quiet………….. Plus, I was getting to know the staff, calling them by their first names…………..They knew me too: The daughter.

Margarita’s daughter.

One happy family.

During one of my visits, the social worker walked up to me with a huge smile and said, XYZ nursing home is going to take her. The director of admissions came out, met my mom, didn’t seem overly concerned about the yelling and said yes. I had never heard of the place. I started to panic. I knew ALL of the best facilities in town………… or at least the ones that earned 3-5 Medicare stars.

This place wasn’t on my list.

I researched the place and was not happy with the number of stars earned. My friend who works in the elder care industry had heard mediocre things……………… Unfortunately, I had no choice.

Do I keep her in a lock down facility where she could never go outside and possibly get even worse or place her at a state-approved nursing home.

It was the only home that would take her. I had to place her. I couldn’t take her home. My mom is a full-time job requiring 24/7 care.

Funny thing about this disease, or at least my mom’s disease, you have to learn to let go. You have to learn that you will never get the very best…………….. Especially because money is involved and wait-lists to the places that might actually help my mom are long.

While the rest of the world is picking a fight over birth control; I am fighting for a bed for my dying mom.

While the rest of the world tries to get rid of any kind of social safety net like Medicare; I worry that one day we might lose the aid we receive; then who will take care of my mom? Sure, I could quit my job, but then who will take care of me financially and my mom? Allow me to reiterate: My mom is a full-time job.

While the rest of the world is fighting about when life actually begins; we let the living elderly rot.

What is wrong with our world?

I see the world as one giant, mostly empty glass. I don’t care for optimists because optimists have not suffered. They have not witnessed suffering. They have not walked a mile in the shoes of someone who is suffering.

I am a realist-slash-pessimist. I am aware that I have my limitations. I can only do so much to help my mother now. I also don’t get my hopes up that things will work out…………………. like when she gets kicked out of a nursing home.

Things don’t always work out.

Then again, sometimes they do………………… but I refuse to get excited about it, because something always interrupts the small victories.

We found a bed for my mom. A good bed. She will be transfered to a unit that has a great reputation for dealing with behaviors.

Every resident at this unit has been kicked out of a previous home (or two). My mom will be in excellent company.

Unfortunately, as the new administrator told me, you have to fail to get to here…………….

True story.

5 thoughts on “She Yells Too Much Or Finding Another Home

  1. kimjoy24 says:

    So well said. Many people don’t understand that it’s not just about putting a loved one in a care center, but finding the “right” one or one where they will be accepted. There are so many horror stories out there and so many low-rated facilities.

  2. Ann says:

    Have just placed my mom in a foster care home, had to take guardianship through the courts…tough stuff, I so appreciate your blog. I got lucky, and got her a great place to be, there just happened to be a room available. Have to get back to taking care of myself so that I can continue to deal with the challenges dementia brings….

  3. Jenny says:

    Found your blog through an NYT article that cited the Michael Wolff article that I found through a search engine – on your blog. Thank God for the internet!

    Am up too late, and tomorrow I start early, looking for a place where my Mum can go for two weeks of respite care while my Dad takes a break from her full-time care. She has behavioural FTD, initially diagnosed as Vascular D with a possible bit of Alzheimers. That diagnosis didn’t fit – when a different doctor diagnosed bvFTD, it all made sense.

    Thank you for your blog. I am grateful to have found it. I feel for you – and I thank you for sharing. I’ll be back to read more. I wouldn’t want anyone to go through this, but to have found your blog is a bit of light on a bleak horizon for me.
    Shalom.
    Jenny, Australia.

  4. Thank you so much. I’m glad you found the blog and pleased that it’s been helpful. Thanks so much!

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