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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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Azilmedia,

Your letter for advise touched me. You are such a good daughter, and you have the right attitude that is grounded in love. Despite knowing some of the travails in front of you, you still want to do it.

These are the things I wish someone had told me, for me: Be kind to yourself. Meditation can get you through some very tough times. Have a sense of humor - laughter really is the best medicine. Support groups also help.

These are the things I wish someone had told me, for mom: Alzheimer's is more cruel than you can know at this time. Not knowing is a blessing.

Taking care of my mother full time for the last 8 years as she disappeared into Alzheimer's was much more a gift to my life than a burden. She didn't know who she was or who I was anymore, but she knew she was safe, taken care of and loved. We talked, I listened, we laughed. If I needed to refocus her on something positive, pictures of her grown grandchildren and great grandbabies, would make her happy, even if she didn't know exactly who they were.

She's been gone for 7 months now. I miss her smile everyday. The gift she gave me was trusting me to care for her until the end. It has given my life meaning and understanding that I would never have had otherwise.

Wishing you the very best!
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azilmedia Dec 2018
Thank you Emereaux. Sounds like a french last name.

it's been about 10 days. We do have help during the day, which is pricey, but that's the only way it can be done at this time since my husband is home during the day. We will continue to have help, until financially it's not manageable and I hope for the best. I just wish the mental health issues are addressed so we know what we have in store. I am not saying to have her drugged up, but just to take the edge off her OCD, irritability and combativeness and negativity. Thank you for your advice. I will definitely research for a support group but not sure when I would make that unless it was right after work.
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Imagine how much money and time you think you'll need and triple that.
Imagine how much drama and tension you'll experience and do likewise.

Many people assume that the very infirm cannot possibly live for longer than
a year or two and throw themselves into their care. Many years later they
are only a shell of their former selves, their family finances have been decimated,
their family is exhausted and/or alienated and their LO, although even more debilitated is still going strong.

Even a quiet pleasant parent with mild Alzheimer's can have a big impact as
their care is 24/7. Because of fall risks and wandering they cannot be left alone
Those who are combative, negative or even abusive are akin to throwing
an atom bomb into your life. Go forward with great caution. Educate yourself
on all the possible risks and downsides.
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Don't. With no help available to you for time off you will burn out. Check ALL avenues before starting please.
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Dianne38 Dec 2018
100% agree. I left same comment in different words! Your life, home, and existenceis no longer your own.
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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 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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When this happened with my Mom, it was kinda sudden. She was living on her own. Was driving herself around, etc. the same month 'this' happened. She got a UTI, went into the hospital and it turned out she also had a gall bladder thing going on, had surgery, and hasn't been alone one day since. Lost her short term memory, which has never returned, her long term memory is affected now also. She went to rehab and we thought all would be ok. It wasn't ok and went downhill from there. I've done all I can for her as at first this was left up to me to deal with, being her caregiver, because of the way this all happened. I have a sister, but that's a whole different story. And my niece, my sister's daughter, has been a life safer for me.  So, so many doctors, etc. Anyway, she still recognizes most of her immediate family, but she really has no clue what's going on from moment to moment. Doesn't remember if she ate, when we take her out to eat, she'll ask numerous times...have we ordered yet? This can be a long and so confusing journey. I wish you well, and one thing that's easy to say but not so easy to do? And I learned this the hard way.  But if you're not 'ok' nothing else will be either. Even the person you're caring for.
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azilmedia Dec 2018
My mother is doing the same thing. She eats breakfast and says she didn't eat. She is soaked in urine, but then later on in the day she will say I have to go to bathroom because I haven't gone since yesterday. It's so bizarre how she is unaware that she wets the bed each night. I have shared a lot of hard times with my mother. She's been very hurtful, but I continue to forget and forgive. Although we have embarked on this journey, I have to keep it in the back of my mind that other options exist and there is no need for me to feel guilty about having her go to one of these institutions if we find the right one. I have to give it a chance.
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Arm yourself with as much as info as you can about Alzheimer's, the most unpretty disease on the planet.
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So true ctude
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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 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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If you work a fulltime job, how are you going to function if you have to attend to your mother during the night?
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cetude Nov 2018
Work full time? impossible. She will have to quit.
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"Unfortunately my dining room is also going to be her bathroom."

"Unfortunately for us, my mother has always been an angry negative person so I am worried about our decision."

". . . my daughters still live at home and they have work and school. "

I am seeing a LOT of red flags in your latest post.

How old is your poor mom? This could go on for years and years, in your home.
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Thank you all for such amazing advice. Unfortunately my dining room is also going to be her bathroom. I need to take all the advice I got from you folks and just take it one day at a time. At this time, I work full time. My husband is home but I don’t expect him to take the full load when I am not home. Unfortunately for us, my mother has always been an angry negative person so I am worried about our decision. We have hired help for 5 hours each day 7 days per week for now and then my shift begins at 5pm. My husband has to deal only for 3 hours before I get home. Please keep advising me.

I do have a question about “how to have her communicate with me when she needs help at night”? What have you found to be the best way. My one friend has her mother using a whistle but I cannot do that because my daughters still live at home and they have work and school. Any tips would be much appreciated.
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Rosses003 Nov 2018
I now live with my mom to take care of her, but earlier on when she lived by herself with a helper who stayed overnight, we had installed a bell that rang exactly in the helpers bedroom. I also know there are wireless doorbells which require a very easy installation, I’m wondering if you call one of the providers you may find a suitable option. The installation of the bell from my mom’s bedroom to the helper bedroom was fairly easy too. It occurs to me that you could also have a baby monitor at night, in addition to the bell. That way you could check on her, and it would be very easy for her to call you.

Best of luck! and I commend you for being willing to take care of your mom yourself, despite the difficulties that you know lay ahead. If I were to summarize important advice it probably would be:

- Be aware that the journey will be likely much more difficult than what you expect, therefore plan ahead. Create an structure (physical, emotional, psychological, financial) that allows you to stay organized and be in control of the situation as much as you can. The caregiving journey normally presents us with many situations where we feel completely out of control. Planning ahead will help you manage through that better, specially because your family will be impacted too. Get them to understand what is happening and get them involved. Getting them involved is the best way to prevent family issues, as the family dynamics will change and every body will need to be willing to adapt.

- Keep in mind your mom is ill. Digest that, understand that. Therefore nothing she says or does is meant to hurt you. She simply cannot help it.
She was negative and controlling before? Ok, before was before; just know and remember that what she does NOW is the illness talking and acting. Position yourself in a higher level of understanding, so you remain above all the troubles that may arise. And help your husband and children to realize that too. Watch Teepa’s videos on YouTube, they will broaden your understanding and prepare you with skills to live with your mom and care for her.

- Set time for you, only you, doing something you enjoy and relaxes you. Make it a date, and never cancel! The same way, set time for you and your husband alone, even if at night when others are sleeping, talk about the day, laugh, and go out. Set time for your family, with your children and husband. Reconnect with them, enjoy each other. Plan on a vacation all together and I’d suggest you do more of that while she is still in the beginning stages, everything will become more challenging as the illness progresses.

- Always remember you are doing something really good, priceless!! so don’t doubt yourself, don’t blame yourself, don’t let guilt take away from the value of the mission of love you’re embarking yourself on. You are giving your mom the best gift a human being can receive: Love, Time, Care. Just remember to give yourself the same treatment!

A hug and God bless!!
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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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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 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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You've been given some excellent advice.  I would like to add the importance of having her paperwork in order.  If she doesn't have a will, get that done immediately, as well as POA, Medical POA, advanced directives, etc.  You are embarking on a lifechanging experience - you need to read and learn all you can to prepare for the changes both of you will go through.  There are many YouTube resources and tips that will make life so much easier - use them!  Don't wait for something to happen and scare you out of your wits, be prepared.  God bless you azilmedia.  Stick with us.  This site is a wealth of information and a warm hug when you need it.  (And you will). 💛
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Schorzman123 Nov 2018
This is very good advice!
I would add also that you keep these items in a safe place out of the reach of your loved ones reach.
Mom had all her paperwork in order and I had it in a file box in our spare room. Unbeknownst to me my mom who had dementia got into it and found her will and we still can’t find where she put it so now we have to let the state make a will for her which means her original intentions for her assets in her will are null and void and the state will now decide how they are distributed.
what a mess.

I agree with you 100% that this site is a wealth of information. It was my saving grace💕
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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 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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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 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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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 2018
97yroldmom, do you mind if I ask: How do you ensure that your LO will be Medicaid-eligible?
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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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Have A LOT of patience!! I too am just starting this journey with my mother and even though I have a sibling he doesn't see the need in helping out. Its tough, she currently lives alone and can take care of basic needs. She no longer drives, so I am her transportation 90% of the time. She complains that she doesn't want me to take her anywhere but I am the only one taking her to appointments, doctor, etc. so she doesn't have much choice. My advice is to be clear in what you are doing or where you are going, even if you have to repeat it multiple times, try to not get frustrated in front of her (Its tough, trust me) and again, have A LOT of patience.
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edwarddwoodjr Nov 2018
Thanks for this reminder: "try to not get frustrated in front of her". I've already shown frustration with my mom in front of her and have felt immediately guilty. I then have to explain that I'm frustrated with whatever the situation is, and not her directly. But if I put myself in her place, I know I would feel hurt and guilty and all kinds of other negative emotions. I will remember this advice, as I'm already aware of making this mistake on a few occasions.
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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 2018
Awesome post!
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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 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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