I’m new here, and I am not sure how to handle any of this.

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I’m new here, and I am not sure how to handle any of this.

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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. 😞

Care Decisions Family Caregiver Working Caregiver

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I understand, your frustration. I too am going through much of the same. My mother has just been diagnosed with dementia which she’s not accepting of. She still living on her own and I’m looking for an options to place her in an environment better suited for her needs. Mom is very headstrong and stubborn and will not be receptive to any change from current living situation. On top of this her retirement is too much for assistance, but not enough for a facility that could help her.
I don’t have any answers for you, but I have a strong sense and empathy for what you are going through. This forum is good for letting us know we are not alone.

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First of all, keep working on Medicaid and don't give up. It is obvious to me she must be placed somewhere outside of your presence otherwise you will end up being destroyed - and you must not let that happen. Her brain is going to get worse and she will never see why she must be placed so do not even try. Sit her down and in very firm, tough language make it very plain that there are rules that she must abide by and you will not allow her to misbehave or abuse you. She will forget but you must keep telling her as long as it takes. YOU are the one that will have to control her and you must not let her abuse you. Let's pray Medicaid kicks in soon before your health is gone. She cannot stay with you any longer.

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I'm one of the many folks who is not an only but might as well be one. I get no help. I tried just today to talk to the one brother who does at least call Mom. Wanted to talk to him about "talking Mom down" when she has panic attacks, as I am currently out of town taking care of my grandson. I got nothing but arguments and was then told that it was my caring treatment of her that has created the panic attacks when I am not around. He didn't even know that she was having panic attacks -- she puts on a good face for him. And my sister recently told me that I'm the one who created this situation by not finding any of the Medicaid-funded facilities acceptable. She, of course, hasn't LOOKED at any of them. I recently moved from OH to KS and am moving Mom in with me, as her LTC money ends this summer. So I share your pain.... I have NO delusions about how difficulty my future will be. I had to retire early to make the move.

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If she gets approved for community Medicaid(ie home help) vs institutional Medicaid(nursing home) ie 2 different applications, she will get a nurse to do an extensive evaluation and then they determine how many hours per week she would get a home health aide......She doesn't sound dire so im not sure you would get more than a few hours per day but not sure......Ive worked PT the last 6 yrs due to my own health and also the declining health of my parents....I was the sole caregiver since my brother worked 14 hour days and travelled internationally...I did it all the dr appts, medication management, food shopping, etc......dad died last summer after a fall and then mrsa infection that went to heart - that was a brutal 2 months for him and I......mostly him - now mom cant be left alone and I went from being here 3 nights per week to 6 nights per week......she has many health issues and only got approved for 20 hours per week for Medicaid and she would have to spend down 2500 each month before they even paid! So, she is on her own during the day and I get home in early afternoon...…...she seems ok now but I have lots of dr appts with her and also she has various ailments......there is no one size fits all - this arrangement works for now but as things get harder, might not.

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Hi, Anita26.

I was in the very same position. I was the only child caring for my mom with dementia. I had moved out of my home state several years before she became ill. I started noticing that her memory was failing when I visited her and even made a special trip home so I could go to her doctor's appointment with her. I voiced my concern to her GP and she vehemently denied that anything was amiss. She was very upset with me. Symptoms started getting worse - memory, reasoning, searching for words etc...

Paranoia set in. With much protest, I had to sneakily set up online bill pay for her bills, because she was forgetting to pay them. I also had to hide her checkbook so if she did remember, there wouldn’t be duplicate payments. I accused of stealing her money.

I finally had to bring caregivers in to help her because she wouldn’t remember to take her medication. I set her up with Meals on Wheels. She hated the food. It was pretty good food. I pleased with her to try adult day care - they provided transportation! She went two times and said she didn’t want to be around all of those “old people”.

I brought her to my home for a couple of weeks, to give the caregivers a break, and also her wallet. I tried again with the adult day care. She went once and wouldn’t go back. I couldn’t make her get dressed and go. Luckily, I am able to work remotely a couple of days a week. That helped.

It got to the point where I basically had to put my foot down. I brought her down to my home and basically placed her in an ALF, against her will. It was the HARDEST thing I have ever done in my life! After we got her moved in and tried to get her settled on move-in day, my son and I were ready to leave. There was a wailing sound that came from her that I’ve NEVER heard before. I’ve never seen my mother cry.

Eventually she adjusted. Somewhat. Every visit was a verse of, “I just want to go home”. I learned that that was very common. Did it get better? Meh. But, I had no choice. I would have tried to move my mom in with me. However, that wasn’t feasible. The dementia she had, Lewy Body Dementia, made her have severe hallucinations and delusions. When she did stay at my home for two-week periods before moving her out of NY, I couldn’t get any sleep because she couldn’t/didn’t sleep. It was very, very, hard, sad, and emotionally draining.

This forum is very helpful. Another resource that I found extremely helpful was A Place for Mom. You can google them. All the best to you and your mom on this sad journey. Hugs.

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thats such a hard story.....ive been caring for both parents in nyc for the last 6 yrs...my dad would wander outside at night.....but he was happy ie he would go into garden, do stuff with garbage, etc......he never wandered away....we considered putting locks ont he door but he would have been miserable......i always got up when i heard him to ensure safety etc...but last yr he fell picking up a garbage can in the middle of the night - broke his hip, had it surgically repaired , spent 6 weeks working hard in rehab and then caught mrsa that went to heart and had sepsis.....stopped eating, etc and i had to make the choice of hospice vs feeding tube and chose hospice and he died within days - hardest decision of my life...but i like to think that he was able to live as he wanted until the end ie weeks shy of 90......but the guilt of hospice does haunt me.....so i think even with your guilt of the ALF, there is always guilt no matter what....

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Do not listen to those people who are telling you "how bad you have it" as they're not going to help you - AT ALL. The reality of your situation is that you may have to move your dear mother into an ALF. Big hugs ((( ))) to you.

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Anita,
We all know what you are going through and feel for you because of it. Since I've been there and, while it might sound easy to say now, this too will pass. You sound like a very loving daughter so kudos to you. Most of us are. However, in retrospect please know: this is a phase, of which there are many. I have had to step back to be the parent and logically think things through. Yes, Mom will cry, rant or rave or be angry, but you have to look to the future (as you have in applying for Medicaid), and make decisions that neither of you would like. Number one is Mom's safety. Cognitive issues only get worse. Be the parent and take the reins to protect both you and your Mom. Her dementia is hers, not yours, so you have to be in loving control.
Her "denial" in her temporary cognitive impairment may only be fear. You have to plan for the future for her.
Talk to a social worker (your county may be able to help you with that) to see what your rights are as far as housing and support for Mom in this stage.
My only concern for you is that you hang in there, try not to let your heart rule your head, and be able to find the words to assuage your Mom to the various options that you may have available to you.
Oh, and by the way, patients with dementia almost always have some kind of phobia. Mostly it's that "they" are stealing from them and talking about them behind their backs, etc.
Take care.

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I was the caregiver for both mom and dad. When dad got so he could no longer walk he went first to hospital then into NH. I LIED to him and told him he was only there for a little while and then he would come home. He was there for 4 months and then died. I was told by their doctor to put both in daycare so I could keep my job. But they both refused, dad because he did not want any one around( he was a very private person) and mom because she did not like old people. I ended up retiring to care for both of them. After dad passed, my mom who had alzheimer's agreed to go to day care because I LIED to her and told her it was a job and she was going back to work. She believed me and every thing was fine. Some times you just have to LIE in order to get them to co-operate and do what is best for them. At day care she got mental stimulation that I could not give her at home and I got a much needed break.

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NH was that bad dad died the short time he was there?

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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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Anita ... You are definitely not alone. All here understand your plight. I am going to refrain from having you read another rant. I understand everyone's need to vent, but I have heard enough sad stories. What I need are practical, suggested SOLUTIONS. Unfortunately, so far ... I find that there are few solutions known. My wife has been in a declining state with dementia of unknown type for about three years. We are both retired and in our 70s. I am trying to learn to be a care giver (ie. what kind of bra is best for summer ... winter. How do I get her to follow ANY instructions from me?). Gee! I know almost nothing about these things! I do attend a local support group for men ... great bunch of guys, good meetings, few solutions. I recommend you join a group for local support. I guess I might agree that daycare is the first step toward balancing life. My wife may be confused and "inoperative" most of the time, but she is still smart. If I took her to daycare, she would spot that in a minute and would panic. She would believe I was putting her in a "home." I agree with an earlier post by jmacleve. I am going to have to fool her. I intend to tell her that WE should go to a "support group" that includes both dementia patients and caregivers. Since she knows I go to support group meetings, she may accept the idea that WE can attend one together. I will have to stay there with her, or she will panic. I have promised her ... "in sickness and in health" ... I will always be with her. And I WILL, but I may be able to eventually leave her for increasingly longer periods in the hands of good daycare people. I understand the staff will convince her that she is loved and needed there to help with the dementia patients. This ruse may work. I agree that I will have to do something. I am older and ill-equipped to provide proper care for her 24-7. Daycare will give me some relief and her some structured care. Financially, I am not sure how this will work. Medicare? Who knows. I wish you the best. God help us all.

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Full time caregiving is not for the faint of heart. My 90 year old dad does most of it for my mom. My sister and I chip in as best we can and for the time being she has outpatient health services for the next four weeks. After that, it’s anyone’s guess. What works for us is the proverbial “white lie”. If something is not agreeable (which is mostly everything these days) to her, she resists. So we have resorted to make everything as appealing as possible. Fortunately, she doesn’t remember from one time to the next, so she always takes us at our word. Example: upcoming visit to geriatric neurologist......she needs to be assessed to see if her meds are affecting her mental capacity. She knows she is losing cognitive ability so this is appealing to her. Easier to blame the meds than to momentarily accept the reality. It can be challenging, but so far so good.

As far as adult daycare goes.....here in Ct. the cost is $89 per day. Dad thinks this is outrageous, but when in home services ends he may just change his mind. At 90 he just won’t be able to handle the situation......and sister and I can’t possibly do more to help out.

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I was an only also. No expectations for anyone to help when it came to caring for mother. From what I’ve seen here the only thing I was missing was the resentment of a sibling that refused to help.

I was fortunate that we never got to where you are and I did have my mother’s younger sister who stayed with her during the week. They were in a rural area with little services available and I was over an hour away in another state with a family to care for and a full time job.

I now work for an Aging Service Access Point and see all the support that is available for not only your mom but also you as a caregiver. If you are in the states there should be a similar agency local to you. Contact them and have a caseworker come visit mom when you are available to also be there. They may be able to give mom the comfort to go to a day program and know it’s only for the day and she will return home later. Most day programs allow for a trial day they you can bring mom to and maybe stay for a bit to see that she is getting on ok.

I wish you the best on your journey and that you find the support you need for both yourself and your mother.

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I was able to get my mom approved for Medicaid and they cover the cost of a caregiver during the day while I'm at work. It has been life changing for me and really for mom. She is really responding well to having more stimulation during the day instead of just staring at the TV all day. Her caregiver plays board games and does puzzles with her. They talk and paint rocks. For me, it has freed me up from the anxiety of leaving her at home alone. I can concentrate on my job instead of constantly calling my mom or refreshing the camera to see if she is okay. When you say worry about her burning down the house I understand that stress so well!
I started the process with Aging and Long Term Care and they helped with the paperwork and explained everything to me. I live in Washington state, so I'm sure the process and requirements are different wherever you are, but ALTC really helped so much. Once she was approved they recommended an agency and we had a caregiver. Something like that might be more acceptable to your mom. I had the same fears about an adult day care center with my mom. Her caregiver is her friend that comes to be with her during the day and it is in the home she is accustomed to with her belongings around her and her pets. Much more comfortable for her.
I'm also an only child. Well, I have a brother, but he has not communicated with us for over 20 years, so I consider myself an only child. My mom's care and decisions surrounding it have all fallen on my shoulders. It is a big responsibility. Make sure you take care of yourself too so that you will be able to make good decisions for her.
Just remember, you are not alone. There are many many people in your same situation. It amazes me daily how many people.

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I completely understand how you feel. I am in the same boat. My mom is ready to go to a nursing home due to her dementia, type 1 diabetes, and she is a big fall risk. I am going to a facility today to meet with them. I am afraid that if I don't put my mother somewhere at least temporarily, I am going to hurt her trying to do her care by myself or injure her. I too am an only child, so all the burden is on me. I wish you the best of luck with your parent and will keep you in my prayers that you get resolution in your situation too.

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For those of you who are new to this journey, I’m glad you found this place. My husband and I are primary care takers for my MIIL and FIL. We have been on this journey for 5 years now that has taken them from independent senior living, to AL and MC. I highly recommend reading this book: https://www.amazon.com/When-Reasoning-Longer-Works-Caregivers-ebook/dp/B071JPHRCC. You will see the journey and get advice on how to deal with your LO. It’s not a one size fits all, but it really helped us. Blessings to you on your journey. Buckle up-it’s a rocky road!

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Thx. I will read this. Life is becoming just too challenging.

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Hi Anita, Sorry to hear about the difficulty you are going through. Your first priority is your self-care. I don't mean going off to a day spa. I mean, taking a few minutes to go for a walk, sit quietly and journal your feelings, take deep breaths, enjoy your favorite song on your way to work. You said your work, so I don't know if you can get "me-time" in before work, or maybe just after work before you get home. As far as support, to be frank this forum can be a double edged sword, you can be uplifted by knowing that others are going through the same thing and you are not alone, or you can get disheartened at so much suffering. Hopefully, you will feel supported here.

Your mom needs to be diagnosed by a medical provider. You said that she is paranoid, but it's not clear if she has had a medical/mental health assessment. Someone mentioned "therapeutic fib" I agree with finding a creative way to get her to see a doctor so you know exactly what you are dealing with. Then arm yourself with as much knowledge as you can about her diagnosis and go from there. Take care.

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First off, If the NH is worth the fee they charge, there will be someone in the office to help guide you through this. Go and ask.

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Try Oceans behavioral center for a full assessment first.

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Hi, and welcome. I am sorry you have to go through this like the rest of us here. One very important thing I have learned here about Medicaid is that oftentimes we are declined the first time we apply for our loved one. However, the good news is that often they are accepted after one or more attempts, so please do not give up if you are initially declined. This is advice I have taken to heart because the day is coming at me like a runaway freight train when I will have to begin my mother’s (Alzheimers) Medicaid application process. Please do keep us posted. Remember to breathe deeply several times a day-our stressed caregiving brains need healthy doses of oxygen, too.

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Only child too with same problems. From what I hear, not only on web sites but among people I know, having only one sibling (the most caring, the most dutiful) taking charge (when there are siblings) is the norm. People are not only unhelpful : they are afraid. It's for the same reason that friends flee or "don't understand". It's because they don't want to know, rather than because it is impossible to understand. A woman I told about my mother's condition (to explain why I wasn't much available) even told me so : she doesn't want to know what it consists of, and just wanted me to tell her that she didn't show any sign of having anything herself (since I'm now a specialist !). The older people are, the more likely they are to be afraid. But, cheer up, not everyone is a coward. The only good thing about this situation is that you can screen the people you can count on. Look for them. They exist and are invaluable.

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Anita26, I too am an only child and cared for my bedridden mom for 2 years in my home, and for 17 years before that to varying degrees. My mom passed away 3 years ago. Then my SIL died and now caring for 88 yr. old MIL but she lives in her own home. Part of my stress was that people just did not understand how tough things were and basically ran while I went through this. I finally felt I was not so alone when my mom went on hospice. I don't know what I would have done without AC and the supportive people on here. You can come here anytime to vent, ask questions, or comment. I wish for you much strength in this journey we are in.

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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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Omg that’s amazing thank you

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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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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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Hi Anita, I’m new here too. From what I’ve read so far this seems like a good place to get advice, support and people can relate. I’m a caregiver to my husband ( much younger than expected) He is awaiting liver & kidney transplant, 4 yrs now. It’s constant doctors, phone calls, medicine and so on ect. I’m not sure how anybody does it 24, 7, but many people seem to. I guess we just all do what we have to because what’s the alternative. I do understand the paranoia your Mom has about going in a home, that seems to happen with cognitive decline. Maybe the facility has some kind of visitation you can take her to so she can meet people and get a feel for the place. People keep telling me to be more direct and honest, kinda just calm but assertive. You’re the one in charge now, sad but true. I wish I had some words of wisdom to help you. Please take care of you!
I’m sure this group can help.

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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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Thank you! That’s a great idea!

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Sometimes you just want to bang your head against a wall; it's so frustrating. My mother, who has Alzheimer's, came into my room every 5 to 10 minutes for four hours this afternoon, for no real reason. So cheer up, it could be worse... Is your mother a rule-follower? My mom responded well to the "no stove allowed - microwave and electric kettle only" rule. Electric kettles turn themselves off when the water reaches boiling, and microwave dinners are easy to prepare without burning the house down. As for the senior day care, start by telling your mother you worry about her being alone and bored while you're at work. Worry about it for a while, and ask her for ideas. Reject assisted living, home health care, and anything else you think of before suggesting senior daycare. Maybe that will make it look better.... Good luck.

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Who says you can't burn the house down with a microwave. You did not know my Luz. We always used the microwave to warm up a cold cup of coffee. That is until she set it for 25.00. That is twenty five minutes to warm a single cup of coffee. The coffee went BOOM, Big mess to clean up. She did set something on fire once in the microwave. The alarms went off and the house stunk. fortunately it self extinguished. She quit using the microwave. If she wanted a cup of coffee she would just pour it from the pot. No cup. Coffee all over the counter.
The knobs had already been removed from the stove when she almost blew up the house with us in it. She turned on two burners, only one lit the other just spewed gas.
Any of this can happen in an instant. If you can get her into a day care please do it. You will both feel better later on. I did not because I am retired from a pay check and just worked 27 hours a day 8 days a week taking care of Luz. I hated it but I loved her and we had no one else on this continent to help unless I hired a companion for her.

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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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Thank you. ❤️

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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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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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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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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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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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I’m new here, and I am not sure how to handle any of this.

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