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Hi, new member here. My name is Anita. I’m an only child caregiver to my mother who suffers from mental health issues and is now having cognitive decline. She has been diagnosed with Mild Cognitive Impairment but I fear she is heading toward an Alzheimer’s diagnosis. It runs in my family and I work in the field so I know the signs. It is both scary and sad to watch this happening.


My biggest issue is being the sole support is going to be a problem for me eventually since I work. She lives with me and has for the past 5 years due to financial issues. I am trying to get Medicaid for her to help cover costs because financially I am pretty strapped also and things will only get worse as her health worsens. Once we’re (hopefully) approved, I think/hope she will be able to stay in an Adult day care center at least while I’m at work so I don’t have to worry about her burning the house down.


Problem is, she’s in denial and deeply paranoid so any sort of day care center will be seen as a home that I’m trying to take her to and never return or something. She won’t see the logic of it and will feel I’m out to get her because I have it in for her. This is just what her brain does. I am not sure how to handle any of this.


Needless to say, I’m overwhelmed. I’ve been the parent for many years now and I’m pretty burnt out already. To think I have to do this longer and find patience from some unknown reserve feels impossible and I guess I’m just looking for someone to talk to about this because nobody I know is going through this and I’ve been unable to find any support groups for people like me. For some reason, people just keep telling me how bad I have it. Yeah, thanks. Super helpful. 😞

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Hi Anita Welcome to the group but sorry as well. This group is the best to help with answers and to "vent". About the adult day care (which is a great solution, by the way), I know others who have told their loved one that they were going to "work". Either you or the day care providers can give them something to do every day...folding laundry (towels, pillow cases, other easy items), sorting papers, wiping down tables... It makes them feel productive. My husband used to read the newspaper to the other guests. Best words of wisdom: Do the best you can and congratulate yourself. You are awesome for being there for your Mom. Big hugs!!
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Anita26 Apr 29, 2019
Thank you! That’s a great idea!
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Hi Anita and welcome,
Please feel free to “let it all hang out” here if you need/want to. No judging on this site. We’re all in the same boat. Nothing you say would shock us. We’ve all been burned out, exhausted, angry and every other emotion a caregiver feels.

As for what to do with your Mom, “therapeutic fibs” need to assist you in caring for your Mom. I know we were taught not to lie (especially to our folks), but, in this case, you are not dealing with who your Mom used to be. Dementia takes over and you need to outsmart it. Could you say you were going to have the inside of the house painted (or some other fib) and she would be safer at the day center just until the workmen finish at your house?

If you can get her doctor to cooperate also it might have more impact.

Its awful that “twisting” the truth sometimes needs to be part of the way you handle Mom’s cognitive decline but, it’s whatever works.

Good luck.
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Anita, welcome to the forum :) It's a great group of people here. I have learned so much during my journey with my parents.

You mentioned people just keep telling you how bad you have it. Well, mine was the opposite, I had people telling me how lucky I was to have my parents lived so long [mid to late 90's]. I was just too exhausted to feel lucky.... [sigh].

I was in the same boat, only child, and I didn't know any one who was going through this. Dementia? What is that? Believe me I had to dive into research and learn quickly. So when the time came when my Dad would climb into his time machine after 4pm each day and transport back to the 1940's, I understood what was happening.

Actually Dad was a sweetheart, it was Mom who was the Commander and Chief of their household. Thus, no caregivers would come in on her watch. Oh dear.

Keeping my fingers crossed that your Mom's Medicaid will be approved.
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klgm326 Apr 30, 2019
I’m right there with you. I’m an only child with a 93-year-old mama. Everybody says, “you’re so blessed.” I know I am, but they don’t know what it’s like. She lives on her own and still participates in meetings, activities, etc. But I see the decline and worry all the time. She’s a hoarder and will not even consider leaving her “stuff.” I have cameras all over her house (she lives an hour away). I have her to our house for holidays and special events and stretch out her stay so at least I know she’s safe. Like your Dad, all of her conversation is “that’s like when my Daddy...” or “we were lucky, when we were kids...” and everything is about the 1930s or 40s. It’s like fingernails on a chalkboard for me.

I have ave a wonderful supportive husband who listens to the stories and is right beside me when I have to get her a plumber or get the roof replaced or other things she needs.

I envy those who have these wonderful relationships with their parents. It makes me feel horrible, but I see little but responsibility. If she would allow me to look into assisted living..but no! Plus she squandered much of her money along the way and her house has a reverse mortgage, so there’s nothing to “sell” to get an entry fee for the nice places.

Its nice to see im not alone in this. Thanks for listening to my rant!
Kim
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Being the only child is not a bad thing. You’ll read here (surprisingly) that many caretakers are abandoned by their siblings and/or criticized by them!

I know it’s hard to see your Mom lose some of her sharpness. This is a painful time.

Try your our best to stay calm and positive with her. Yiu can do it!

You are not alone.
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Anita26 Apr 29, 2019
Thank you. ❤️
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Hi Anita, I’m new here as well and in a similar position. My mum is 91 with MCI which is definitely getting worse and I don’t think she will be ok on her own for much longer. Like you I need to work and struggle with managing both jobs along with minding grandchildren. My fear is that this will go on for such a long time when I’m close to burnout already. This site is great, lots of good advice and I’ve found that my guilt and expectations I put upon myself have lessened since reading other stories. It’s a difficult time and many of us are going through it. Enjoy the good days and breathe through the rest.
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Dear Anita26, I'm also new at this.
My sister took care of my mom for 5 months after a bad fall. Now its my turn, as she mentally and physically won't.
She's also in this field and just brushes it all off. When she was "taking care of her" she went to work 10 hours a day. Then when she came home she was asleep ( my mom)
I stayed with them (her husband, her and my mom) saw what was happening and decided she'll come stay with me, I live in another state.
That said, I have taking a FLA
And don't know how I'm gonna go back to work. My husband is no help and my son isn't either (21)
Her health is failing. She's forgetful, doesn't clean herself well, and the septic well let's say "clogged" when she does clean herself. She is very unsteady on her feet so she needs assistance even to get up.her cognitive ability is poor. She now does't even no if she's eaten. I'm upset to even admit that day to day is a struggle.
She cared for me now it's my turn. I love her so much. I see the same person but she's not there. I have to do this. I even feel guilty brushing my teeth leaving her alone. IRISH CATHOLIC guilt maybe. I keep asking myself, what's wrong with me? Other people can do this.

Tthanks for letting me vent.
God bless all of you dedicated, caring angels.
feelinglost56
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Erinm60 Apr 28, 2019
Hi I’m Irish Catholic as well. Let me tell you my mom never had to deal with what we are dealing with. People died sooner. Also my dad. The greatest Notre Dame fan ever, Told me that when his dad was dying in 1962, He was watching Notre Dame football on tv and after years of dealing with his dad’s alcoholism, he just wanted it over.
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Not an only child but might have well been one. I was retired when we had to bring Mom here. It lasted 20 months. I just didn't have the strength. Bath time too alot out of both of us. And toileting was the worse. I think part of my problem was I went from watching a grandson for almost 2 yrs 5 days a week to Mom 24/7. I did place Mom in Adult care after a yr of living with me. They picked her up, fed her breakfast and lunch and bathed her for me. No, at first she didn't like it. Wanted me to take her, I said no. She declined monthly so after a while it was routine.

Please, think about your future. A number of Members have used their own money for Mom/Dads care. Then they find themselves in their 60s with nothing for their future. The best thing for you and Mom eventually maybe a nice NH. She will only worsen. She will end up being in her own world and not aware of what is around her. Medicaid goes by her income not yours. My Mom was in a NH and she was taken better care of than the AL she was in. Our bodies and minds can only take so much.
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Anita26 Apr 29, 2019
I can’t afford anything other than that anyway. She did no future planning and I’m definitely not going to use my measly retirement for her. I am an only child. I need every cent. Nobody to look after me when I’m old.
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Welcome to the group and sorry that you have to be a part of it. Sigh!

People who has never been down this road don't get it and they just can't.

I hope your mom gettes Medicaid to help you out.
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You might want to investigate PACE (Programs of All-Inclusive Care for the Elderly) and see if there is an agency in your area that would help with care for her. Here's a link to info on the program.

https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/PACE/PACE.html
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Anita26 Apr 29, 2019
Omg that’s amazing thank you
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Hi, I JUST (3 days ago) put my mom in an assisted Living Facility. My situation is different in that my mom has money to pay for, but I'm also an only and my mom is....well, I can't use those words on here. I had to surprise her with moving because she was so dead set against it, and while I wish I didn't have to do that - I HAD to do that. So 2 things - YOU have to set boundaries. She'll yell like a toddler throwing a tantrum and you'll have to harden your heart to it. For your sake and your sanity. You will also be doing what's best for her, since you can't keep this up. Also - work with the facility!!! I did in planning for my moms surprise, but I still had no idea what those nurses are capable of. They should be paid millions for how they deal with crazy, grumpy, angry old people. Warn them about her behaviors, ask if they'll be able to deal with her, and if they say yes, trust them. They'll be able to calm her MUCH better than you can. Partly because they haven't resented her for the past few decades. Find a place (even just a daycare) and hand her over, no matter how many fits she throws.
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