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."

Photo by Meredith Farmer

I had so many noble ideas for this week’s post….. I was feeling good. I started thinking about how this — life — was some sort of test, a means of proving one’s ability to persevere and not succumb to the easy-outs; because by staying the course, we’ll somehow achieve spiritual bonus points. I was arrogant, I suppose…….. I thought I’d done so well, not losing it that is……………..I mean, I know people who were tumbling into a deep pit of depression and they had nothing significant going on their life — other than too much time to think………………….. I was proud of myself. I thought we were going to be OK for at least the rest of the month until tonight, when I was informed that my mother had 30 days to pack her stuff and leave the home.

Mom yells. She spits. She does have a bit of a poopy reputation.

Other residents have been complaining. Complaining to their families. I suppose it boils down to money — why risk losing one or two relatively easy residents versus my mother? She has never been easy to deal with. Her disease is especially trying……….. I would probably do the same. Nursing home care is a business. A big business that’s only going to boom over time. I got word at 5:00 p.m. I started calling facilities as soon as I hung up the phone. Unfortunately, I am limited in terms of where I can place her. Her behaviors, the result of frontotemporal dementia, mean I can’t place her just anywhere………… I need to find a behavioral unit. And those are few and far between here…………… but she’s not violent, so I risk placing her in a home where she could be the victim. My mom’s behaviors are of the benign variety……………. she yells, she spits, she gets into her poop from time to time……………… but they are behaviors and it seems things are pretty black and white when it comes to nursing homes………………………… people do not want to deal with behaviors.

So here I am. I have no idea how my father is going to take this. I dread the conversation; I just don’t know. But there’s no one else………………………..

I saw a shaman once who told me that the source of my mother’s disease (and my own) could be the result of an agreement we made in another life (I know, what was I thinking? Why would I agree to such a dumb pact?)……………. I can’t help but think about that…………. did I do something horribly wrong. Is this my punishment………….. in this lifetime? Or was I perhaps some saint who agreed to participate in this life with my mother, who, clearly, was also a saint in order to voluntarily go through this.

Or, is this the act of God; a vengeful God……………. one who is enjoying this…………… watching his puppets suffer.

(I don’t believe in a loving God. That makes no sense once you step back and ponder all the suffering going on in the world).

Or maybe this is Hell. People experiencing varying degrees of Hell, but Hell……..

Whatever this is, I am less fearful of death………………. Sometimes, I think, well, at least all of this will be over with and death is probably less stressful…………….. It’s terribly tragic way to think. I know that.

Last week, I was accused of wanting to sedate my mother by a psych nurse practitioner’s partner. My mother was grinding her teeth so badly, you could hear it if you were standing 3 feet away from her. It pained me. It kept me up at night. I asked the nurse practitioner if she could do something; increase her medication; something; anything……………. she dropped my mother, said I should find someone who shares my “philosophy” of caregiving and then that response by her colleague. Talk about knife in gut…………. I took mom back to Banner Alzheimer’s Institute that same week……………….. they looked at what the nurse practitioner was giving her……………………….. it was wrong; they added and increased her meds.

They also removed the Robitusin PM that was being given for her cough (cough? what cough? I called the home…. oh, she has a cough once in a while…. it’s as needed.). 

Yeah. A cough.

Then, one week later, we get the boot. I don’t know how much more I can take…………. I can’t even imagine what “normal” feels like. The glass is always half empty — there’s not point in being optimistic about things because they simply do not work out when it comes to this disease……………………

I always wanted children, I used to day dream about being a mom, I had baby names picked out, I thought about outfits and how I would dress my kids………………..and now I can’t even see that as a possibility……………… it’s just slipping away. I just can’t fathom doing all of this and raising a baby. I have my hands full with two parents, a job, a relationship, friendships (I feel like I suck at all of the above most days)………………

And I’m afraid that God will continue to punish me. I truly believe that he will give me a child that has some terrible disease…………….. and you can’t give them back once they’re out. Thing is, I don’t think I can continue to fight for another person. I can’t do it. I can’t care for a sick person……………not for the rest of their life. I don’t know how people caregive a child into adulthood…………… Still, it breaks my heart every time I see a baby picture, a big belly, an ultrasound or anything of the sort…………………. it reminds me of what I don’t think I’ll ever have.

I will be 35 in three weeks………………. and this is my life.

I’m tired.

>>Flickr pic by Meredith Farmer

17 thoughts on “Mom Gets Kick Out; God Laughs

  1. kimjoy24 says:

    I can relate to many of the emotions you are going through. Finding a good nursing home is extremely difficult, especially when one requires dementia care.

    I don’t have any magical advice to share, but keep writing, keep sharing your emotions. You have a powerful story to tell and maybe it can help others realize they are not alone.

  2. Katie Hart says:

    My mom once got kicked out of a group care facility. We were told that she had 30 days to pack up and go as well. The next month was total craziness as we packed up and moved her halfway across the country to live near me in a dementia care facility. Two months later, we were told that her behaviors were too extreme (from the dementia care facility!!). She was scaring the other residents and had even tried to strangle another resident and punch a nurse. (Ok, I admit, it was a little extreme.) We admitted her to a geriatric psych ward for over a month. That was the most awful time in her disease thus far. Now she is on pretty hefty sedatives an is back at the dementia care facility. Don’t feel bad about sedation!! They are the best things we can give her to help her. She will just feel sleepy and it will give you incredible peace of mind. And just think, if she’s groggy, her aim while flinging poo won’t be as good. :) Sedate. Sedate. Sedate. It isn’t the nurse’s mother. It’s yours. Do what makes you feel ok.

  3. carolyn says:

    I feel your pain, I have commented before, my mom passed away just over a year ago from this horrendous disease…I am thankful, and I have to believe in some deep dark recesses of her mind, she wanted it to end. We faced being “moved” to the “secure wing” of her facility, I too had the conversation to “modify” medication to make her more “pleasant”…they had a psych eval, and actually did, I have to believe that it was a good thing, calmer, less disruptive, less cussing, seemingly more content. The constant termoil she always seems to be in could not have been good for her. I hated it, and I hate it for you. : (

  4. Jessica says:

    kathy, i just wanted to say that while i understand feelings of not having enough energy for more caregiving, i want to highlight the difference in caring for a child — there are so many moments of joy, so much love returned, so many small victories and you see learning happening so clearly every day. children learn from you, bad behavior can be improved, logic and reasoning work (sometimes), you see the return on the investment of your energy and the distinct lack of hopelessness makes such a huge difference in waking up every day to start again. sure it’s tiring, but not spiritually — your soul isn’t drained. i feel so thankful every day for the joy that my daughter has brought me, in contrast to the sadness of my mother’s dementia. the happiness my daughter brings me helps keep me afloat, helps me survive the walking grief. i have been unsure, given my mother’s situation, whether i should wait to have another baby, but decided that we should go ahead and try because i need to LIVE my life, not put it on hold, and find happiness where i can find it. i am doing the best i can for my mother, as you obviously are. but i need to also do the best i can for me.
    -jessica

  5. Jessica says:

    rereading my comment — i just want to make sure i’m not coming across as critical — not at all. i just want to share what it’s like to be doing both kinds of caregiving at once — and i guess i want to reach out and give you a hug, and hope, and i’m hoping that the hell you are in right now doesn’t force decisions about your own future, and about what you think you’ll have left to give.

  6. linda says:

    sending light and love . . .

  7. I’m so sorry. You are going through so much at such a young age. It is unfair but I truly do not believe it is a result of something you’ve done or some punishment from God. Don’t give up. You are doing a wonderful job caring for your mother. It’s something you will not regret.

  8. Mariarose says:

    My heart aches for you.

  9. Leslie Zaunbrecher says:

    Hi Kathy,
    Just wanted to let you know that you are not alone. My Mother was diagnosed with the blanket “Alzheimer’s Disease” in 2005. She was 55 years old. They now think she may have FTD, and we have been through very similar tortuous moments such as yours. She had to be stabilized in a behavioral hospital recently because she was flashing the staff and the men at the assisted living facility. She’s now in a memory care unit, aka LOCK DOWN unit. This horrific disease robs us of the ones we once knew/loved. I will be 35 in a few months and I totally relate to you. Thank you for sharing even though you may feel like crawling in a black hole and never crawling back out.

    Sincerely,
    Leslie

  10. I know we do not know each other, but I have appreciated your honest voice… I am catching up on reading and saw this post. I am thinking of you now and wondering how you are doing. You…your story…are in my heart.

  11. Andrea says:

    Kathy,
    I don’t know what to write to give you comfort but I have been there. It’s tough. It sucks. It’s guilt ridden. It’s torture. It’s draining- emotionally, physically and financially. To watch your loved one lose their ability to walk, stand, eat, laugh or even fucking smile is a living hell. I helped my Mom struggle through five years with Vascular Dementia and I just lost her on January 11th- the day after her 75th birthday. You mention in this post that you have forgotten what normal feels like. Well, my life has been back to “normal” for one month today- and it still sucks. My Mom is gone and I miss her. She was my Mom AND my best friend. The only thing that gives me comfort is that her suffering is over. I don’t believe in “normal” anymore- just different.
    My advice? Just do the best you can (which I’m sure you are) and love your Mom A LOT while she is still with you (which I’m sure you do). I know this shit is the ultimate hassle with every obstacle, behavior and misguided health-care professional that you encounter on this journey with your Mother, but you WILL get through it. I know that sounds trite and it’s hard to see right now but you will….

    I know you’re tired, girl. I know it sucks. I know it is a gut-wrenching, soul killing awful journey with a shitty ending…
    But you know what? I would do it all again for her……but I’m pretty sure she wouldn’t……

    My thoughts are with you and your Dad.
    Take care.

  12. Mari says:

    My heart goes out to you. This happened to me also with my Mom. Found a nursing home about 5 minutes from me because my Dad was exhausted and getting sick himself. Brought my Mom in on a friday and got a call from them on Monday saying she was “combative” and were going to place her in a psych ward further away. No freakin way. She was not combative before she arrived there. If she felt threatened, she would react. How would you feel if some stranger (yes, i was a stranger to her at times), came up to you and touched you, you would react! Found out later that the meds she was getting (seroquel to keep her calm) before the nursing home move was taken away by the nursing home’s 80 year old doctor. Unreal. I sincerely hope you have found another place that is better equipped to handle your Mom and near you. I ended up bringing my Mom back home to Dad and was able to get 24-hour care in her home. She continued to get her seroquel which made life easy for her and us. She still smiled, laughed, sang, ate. You have to do what you have to do. Hang in there.

  13. You’re not coming across as critical. Thank you for reading and understanding. KAT

  14. I’m so, so sorry. My mom (age 59) was diagnosed with AD 5 years ago, and has been in a nursing home for five months. I can only imagine the difficulty of having to move a loved one from one facility to another. Thank you for blogging and creating this community. I’m so relieved (and horrified) to know there are other 30-somethings coping with this. Thanks.

  15. Thank you for your note. I’m sorry about your mom. It’s a tough road. Thank you.

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