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I am about to embark on this care journey for my mother. I read numerous posts and responses and still want to give it a shot. I am an only child and I have always been there for my mom so I feel I can't stop now when she probably needs me most. I realize she is in the beginning stages of Alzheimer's/ dementia because she still recognizes my entire family, but cannot keep new memories or experiences. She eats breakfast and forgets that she ate soon after. She moves into my dining room this coming week. I am relieved she isn't very far, but also very scared as to what's coming down the road in my/our care journey. I can't wait to hear tips from everyone.

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I never know where to post---after the question or after a reply.

Ahmijoy is right on the money. I'm glad that you seem optimistic about your mom moving in with you. It sounds like you made a choice as opposed to not having any other option. That's a good way to start.

And I would imagine that you have researched Alzheimer's and know what to expect, in theory. That's good too.

Try to keep you expectations reasonable. I moved my dad in with me and he didn't have dementia and it was the most difficult thing I'd ever done. He's been dead for over 5 years now and I still wake up in the middle of the night thinking I hear him calling out to me. Caregiving gets into the psyche, into our bones, hearts, souls. We have to push who we are (and were) away in order to make room for another person within ourselves. Someone whose needs come before ours. Someone whose life we try to maintain on a daily basis. And in so doing our bodies, minds, and souls rebel because while we're capable of sharing ourselves with another person, we're incapable of giving another person free reign of ourselves. It's an unnatural state and it's painful and exhausting and maddening.

And please remember: if you find that caring for your mom is so difficult and you begin to wonder what you were thinking, it's normal to feel that way and doesn't reflect upon you as a daughter or a caregiver. I think you'll go through a honeymoon period in the beginning where you and your mom are nice and polite and things seem to be working out beautifully but the Alzheimer's will make an appearance. It will live with you too.

And I agree with Ahmiijoy: have a Plan B tucked in your back pocket. Don't get to a point where you're falling apart and your mom's dementia rules the house and you have no way out. Keep a Plan B in the back of your mind because there will come a day when you feel so trapped all you can do is cry. So don't get into that hopeless state. There are options.

Good luck to you and your mom!
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Ahmijoy Nov 26, 2018
Awesome post!
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I recently tryed to look after my mum who has Dementia, with all the help from carers and my brother sleeping there every night,it was very difficult, we didn’t want to place her in a nursing home but things got worse and she would try to get out at night, and wouldn’t eat anymore. Since she has been in the nursing home she eats she has 24/7 care, and l don’t have to worry about her every minute. Things will get worse unfortunately and l said l would never place my mum in a nursing home, but thank God l did because she was not safe at home and it was taking a toll on myself and my family. I am just getting over feeling guilty but l know l made the right Choice. Good luck and l wish you all the best
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You have made what I call the “Noble Promise” to your mother. Perhaps you have heard horror stories about narcissistic parents making their children’s lives a living hell. And other stories about how horrific nursing homes and other facilities are. Those stories aren’t always true. Although I have to say that 95% of the posters here say since their parents moved into their homes with them they should never have done it. Keep in mind that even if your mom is a sweetheart, easy going and totally undemanding, you will be doing the work of an entire staff does at a facility, around the clock, 7 days a week, 365 days a year. As her disease progresses, your life as you know it now will become a fond memory.

If you have not made your home handicap accessible, things will eventually become very difficult for you and her. This involves much more than making a bedroom out of your dining room. And, speaking of that, be prepared that your entire home will look like a medical equipment warehouse. Mine does.

We alll go into caregiving with the best of intentions. We will never lose our tempers, never cut corners with caregiving, never get burned out, we will spend our days having wonderful conversations and spending time bonding with our much-loved one. Then, they get the flu and we spend 36 hours straight changing them, the sheets and washing the floor.

Have an alternate plan. Keep an eye open for a good facility in case it’s needed. Consider applying for Medicaid now. Keep an open mind, stay in contact with her doctors and do research about dementia. I wish you much luck and that you eventually post about what a great decision you made.
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BlackHole Nov 26, 2018
And there’s no time and no room for you to get the flu.

Ahmijoy gives good advice. Definitely have your “what if’s” lined up. And never, ever doubt yourself if you need to change course.

Best of luck to you. Keep coming back to AC Forum for support.
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It gets worse and you will have to get used to bathing them and even cleaning up their fecal matter. I tell people if you are able put them in a nursing home--by all means do so-- because it will destroy your life. I had to tear up my bathroom and put in a walk-in shower with lots of grab bars because one time I found her in the tub -- head on the bottom and if the water was on she would have drowned--and unable to get up or out and this was 3 am. that's right 3 in the morning I had to drag her out of the bathtub and she was naked at the time. So I had to make an emergency call--rip out the old bathtub and make the bathroom drown-proof with a walk in shower. that cost me $10,000. this is only the beginning of it. and forget about having your life. your entire life will be surrounded on taking care of her, feeding, brushing her teeth, crushing meds, thick it in all fluids, bath schedule, exercise schedule..and yes it will be 24/7 seven days a week and nobody ever helps. and half the time she will fight you like clamp her mouth shut and refuse to take her meds and you have to walk away and come back and try and try again. and they fall a lot. The worse they get they will fall and nothing you can do to prevent that. I made fall prevention a top priority but it still happens sometimes. THE COST OF DIAPERS is a fortune. She uses about 3-4 a day and they are about 75-cents a piece (purchased in bulk)..gloves cost a lot (nitrate gloves are a fortune). and so do wipes. None of it will be paid for by Medicare. Get your doctor to write an order for a hoyer lift. because they will eventually forget how to get up and be dead weight. Or call 911 everytime they fall. PS: If they are constipated more than 2 days take them to the Emergency Room because chances are they are impacted. Bowels are over 95% of the stress and if they mess in their diaper they need to be showered because that stool will cause a urinary tract infection. Welcome to my world. It will be your world.

NOBODY is going to help you. The government gives NO help. and your life savings will be decimated. The stress is oftentime unbearable and it makes me wish the government would hurry up and do WW 3 and get it over with.
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azilmedia Dec 2, 2018
OMG Cetude. I am so sorry for what you have endured. I am taking everyone's comments and experiences into very serious consideration and I just need to review every month or two. I will re-read your message weekly as a reminder of what's ahead. I can't even imagine.
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Think long and hard. You are going to put your mother before your kids, before your spouse and before yourself. No matter how great and strong at family you have, it will start to feel the strain. If you can, put her elsewhere. Even dealing with the parent being in a nursing facility takes all your free time as it is if you work and have kids activities and want a life with spouse. They are paid to take care of patients. You need to trust God to take care of her. Caregiving has almost broken me, almost destroyed my marriage and nothing can bring back what has been lost. Your parent has lived a good life and one that they chose to live and whether they live with you or in a nursing home it will not change the outcome for your parent. Don’t make irrevocable choices at a cost to your family. Loving doesn’t mean sacrificing your life or happiness. caretaking for my selfish, nasty mother has brought me no value, no worth because of all the suffering it’s caused. It will take a long, long time to get rid of the anger and resentment. Please don’t do this if you can avoid it.
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Dianne38 Dec 2, 2018
Wow Susan, that was beautifully put. So sorry for what taking care of your mom has taken from your life and family. It's a huge strain and on the resentment comes and never goes! We do it for the right reasons but with little pre-thought to how it will domino effect our own life and family. Prayers sent for you😇
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Hi I too am an only. My mom has mild to moderate dementia. I would say more moderate. She’s been diagnosed for about 3 years. She’s almost 81. What I’ve learned from 24/7 caregiving is this disease seems to plateau for a while , and then fairly suddenly, there is a decline. Be prepared for when that happens. I’m now filling out an application for memory care. It’s getting to be too much for me and my husband and daughter. 6 months ago, she was bathing daily, changing her clothes, taking her meds, going out twice a week with a friend. Then out of nowhere that all stopped. I took her to her physician, who immediately revoked her drivers license and increased the meds. Blood tests were taken. No infectious cause found. I guess it’s just the course. I used to feel guilty for even thinking about placing her. I don’t anymore. I can’t do this alone. My husband works nights. My daughter is in college. I’m on call 24/7. It’s stressful to say the least. I think I will live longer and she will be happier in a memory care unit. She now writes down where I am, when I left, comes to me 3 or 4 times a day to get the tv to work, refuses to sleep in her bedroom, now sleeps in family room which has no doors and complete access to kitchen, leaves tv on all night , same channel Fox News, lights on all night. I have aides in twice a week to bathe her. Then I can sanitize her clothes which she refuses to change. Sorry if this is so negative. My advice is to read as much as you can about dementia. Prepare yourself for increasing responsibility, and get help when you need it. Hope this helps
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careformickey Nov 27, 2018
HI Erin. can you tell me what is memory care? My mom too has dementia. Unfortunately she is very angry with me and keeps wanting to move out. I think she is depressed and gives me the cold shoulder when I am trying to care for her needs with food, meds, etc
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I personally admire anyone who tries this with their loved ones. My mother has lived with my brother's family for 22 years. Epic fail. Everyone is unhappy. Boundaries were not set, brother is impossible to talk to/work with. Mother is unhappy and has begged all the other sibs to take her in. Won't work with anyone else and she is now requiring 24/7 care.

DO NOT promise Mom she can live with you forever. That's the worst idea since--whenever. Illnesses, the inevitable decline...they will happen.

I hope you have assistance lined up, I hope you are incredibly patient. If you think Mom is going to be happy living in your dining room--she may just roam the house, are you ready for that?

I sound like a negative Nelly, but I have been there, done that and wouldn't do it again for anything.

However--good luck. And come back, We;re always here.
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Going on 18 months caregiving 24/7 but after 1 year I began to hire more help. The help with anything allows me my sanity, my life & keeps mom in her home longer. Best advice I got here was to focus on doing what I can for as long as I can, because doing the best you can isnt sustainable. Keep that plan B & don't beat yourself psychologically, if you have to use it. Mom had a life & if she was in her right mind she would want you to have one too. Good luck it's a journey that will show you strengths you didn't know you had & if you do all you can without losing yourself, you honor your mother.
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Schorzman123 Nov 28, 2018
I agree, unfortunately my mom got so mean that no one would hire out to care for her anymore, not even my sister so the last 6 months I was on my own. I almost lost my mind. I am a very strong person and did survive. I had to focus on one day at a time. Telling myself if I could just make it through today it would be fine. It really does show you how strong you can be.
It takes a psychological toll on you but that can be dealt with later if you end up with no time for your own respite care in the process. The hardest toll it took on me was the lack of sleep. Constantly listening like a mother constantly alert. Mom passed 2 months ago and I still can't get my sleeping pattern regulated. I’m lucky to get a couple hours per night but I’m working on it.
It is the hardest yet most rewarding thing I’ve ever done.
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Here is a wealth of information. See link below.

Don’t skip the basics. Educate yourself. It’s ongoing.

Don’t forget the other people in your life. Your decision will affect them profoundly. Remember that everyone’s life matters, not just your mothers.

Try to find balance. Be ready to change your mind if needed.

If possible. Accept help. Hire help. Seek out senior services. There is no virtue in wearing yourself out. Each layer of help will allow you to last longer. This is not a sprint and it’s not a walk in the park.

You probably don’t have enough time, money or patience to do it all right, so remember to pick some guidelines to go to, to make sure you are thinking straight.

For instance, I review the ADLs on a quarterly basis for my LO and myself.

I watch all expenditures to make sure my LO will be Medicaid eligible should she ever need it. If she doesn’t need it, I figure it’s still a good habit. Spend her own money on her care, not yours. Keep records.

I make sure all her legal paperwork is uptodate and accessible. I do this on her birthday.

I keep a daily calendar to make it easy to remember what happened when.

These are just some of my touchstones. You will develop your own.

There is a measure of comfort in knowing I’m as prepared as I know how to be as our lives move forward.

https://www.agingcare.com/topics/36/new-to-caregiving
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NewandTrying Nov 26, 2018
97yroldmom, do you mind if I ask: How do you ensure that your LO will be Medicaid-eligible?
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RE Medicaid.
There are many on here who can better guide you as they have actually filed for Medicaid. I have not. However I am aware that a couple of years in a facility would wipe out my aunts savings.
I don’t allow any of her funds to be gifted (which was a big job with her desire to help her family members) outside of a graduation gift or baby shower. Something small.
I make sure her money is only spent on her care, her home and her insurance, taxes, Medical etc.
Should she run out, I want her to be able to qualify without a hiccup. She is eligible for VA benefits and I plan to apply for that before Medicaid.
She is 92 and is healthy aside from mild dementia as long as she takes her bp meds and thyroid meds correctly.
She used to go to the bank (or have someone who didn’t know any better drive her) and get several hundred or even a few thousand out. Then she didn’t know what she did with it. That had to stop. So if your mother has grands who show up on SS payday, stop that. You just don’t know what is around the corner. If she needs you to care for her, then she’s not able to handle her finances IMHO. If that’s a hard subject to discuss with her, then you’ve already got a red flag. Don’t wait to establish boundaries. If she’s giving a wayward brother the money to pay his car note while you are paying for her room and board, that’s the same as you giving brother the money only worse because it is gifting and can cause her to have a penalty and be denied care when she needs it or you can no longer care for her.
I think every caregiver should visit a Medicaid savy certified elder attorney for a consultation on the specifics of the parents finances so that you don’t make needless mistakes. I hope that helps.
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anonymous806474 Nov 27, 2018
My Dad was 97 yrs old and after being sent to a NH after his last visit to
Emergency he was assessed for needing 24 hour care.They did the paperwork in Hospital and he was admitted for rehab to stay for LTC..he had 12,000 in the bank..I did not know about the 2000 rule quickly found out.
He had this for his funeral which I paid for a funeral trust for 10,000.
He never had any other money in the bank..just lived with brother caretaker
using his 800 social and 900 aid and attendance...He then after 2 mos qualifiying for Medicaid..paid the NH with his 1800 and Medicaid ...
He got an infection and died in Hospital only being in NH for 43/4 mos.
Basically Dad paid 10,000, and Medicaid 10,000 the rest the NH is trying to get from me for the after 20 day rule where Medicare stops paying if u have no supplemental...that is 161.00 per day.Sort of a nightmare..better to have homecare if u can or someone from the family..sound like she is ready for Nh or AL.
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