At what point do you know that you can no longer care for your mother?

((Big hug))

This is always a difficult decision to make. You are not wrong or right to keep your mom at home. Most people asking for help here are at their wits end and extremely burnt out and in those situations it is very valuable to know that placing their LO in a facility is not a bad thing to do.

Care giving someone is hard. Care giving someone with advanced dementia is nearly impossible to do. I am glad that you are getting 5 hours of help a day. And your daughter spends time with her too. That all helps make the situation somewhat livable although still quite difficult and demanding.

Can you talk with someone about this decision? Make yourself a pro/con chart? You don't have to do as much as humanly possible to be able to live with yourself without guilt. You deserve to have a life and freedom to be happy and spend your time in ways that benefit you.

Your mom is probably happier at your home. She's comfortable there, etc. BUT she is also a lot of work and as you know it is only going to get worse. 24/7 care is VERY demanding and you will get burnt out and suffer physically and/or mentally when you are doing too much.

I would start looking into places. Find one or two you like. If there's a waiting list, put her on it. You can always pass at the time and go back to the bottom of the list. When she has a bit of decline, that might be the proper time to move her into a facility.

Again, there are no right or wrong answers. You don't have to wait until you are beyond done. It is reasonable to put yourself on the list of important things and not just put your mom first in all cases. There are pros and cons to either option and do not beat yourself up about the cons of placing her somewhere. Nothing is perfect.

You need to forgive yourself regarding your dad. You did what you could at the time, what you thought was best. It's really not fair to second guess yourself. Even if your solution wasn't perfect, nothing really is so give yourself permission to be an imperfect human being. Like the rest of us.

There’s nothing easy about such decisions, no matter which way you go there’s doubt, sadness, and challenge. It’s time for your mother to move when you reach a point of exhaustion, burnout, and simply knowing you can’t keep it up. Then residential care becomes the kinder option for your mom as an exhausted, burned out caregiver isn’t good for either of you. Either way, you’re a caregiver and your mom is blessed to have you in her corner

“It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility”. Placing someone in a care facility isn't so much about the LO as much as it is about the caregiver. The fact is that most people living with dementia live out their lives at home. I always suggest that people know their caregiving limits. Certainly that's easier said than done. Although there are times that your mom's behavior may drive you crazy, as you say, at what point will her “antics” overwhelm you? At what point could it physically and/or mentally affect you? Only you can answer that. Caregiver complaints of constant headaches, stomach problems, severe stress that affects their own life, not wanting to get out of bed in the morning knowing what the day holds, or having to deal with their LOs incontinence are all reasons to consider a “new home”. And then there are safety issues such as leaving the stove on, wandering out of the house, confusing dangerous liquids with similar looking safe drinks in the home, etc., etc. For the most part, your mother doesn't know what her care requires of you. You must take care of yourself.

Remember, if you decide to relocate your mom, that although she may no longer be in your direct care, you are still caring for her ( and yourself) in providing her a safe, comfortable environment where the staff is trained to provide for her well being.

I kind of "fell into" placing my Mom. I did not bring her into my house thinking it was going to be permanent. She owned a home I was trying to sell. Those proceeds and money she had saved would have placed her an AL not 5 min from me for 2 years. She was here 20 months. I wanted to go to nieces wedding, her granddaughter, with just my DH. It was an 8 hr drive to a golf resort. Sorry, I just wanted to enjoy myself without caring for someone who had no idea what was going on. So, I went to the AL looking for respite care. Turned out they were having a 50% off room sale. Mom could live there for at least a year and if house sold, another year. So I placed her there. It was one floor so she could walk around in the hallways. They had couches and chairs every so often. She had socialization. By the time I went to the wedding she was all settled in and happy.

My girls saw humor in the situation too, but they weren't here 24/7. They weren't bathing, dressing and toileting her. Mom could do nothing for herself other than feeding herself. Itvwas like having a toddler again.

Only you can answer how bad this stresses you out. My mom was difficult living with us. In a way, MC has given her the independence she needs while keeping an eye on her. My mom takes the direction of most caregivers better than me. She still hates days being there, but has many great days. She laughs more! The activities they have at MC make my mom feel like she's at school, and she has always been a straight A student :) Now that things are opened back up, I can go see her anytime and take her out anytime. I realize that we were not enough for my mom. Our days of being at work, coming home, and then relaxing were boring to her. A good MC keeps them active and thinking all day where they are ready for bed in the evening. I've joined a team. I'm not neglecting her. Don't get me wrong, the whole situation still stinks. I get sad almost everyday thinking about it. I know if my mom was in her right mind, she would tell me not to feel guilty. My parents were married for 60 years, raised us 4 kids, had a blast with their grandchildren, and then my dad passed 4 years ago. She ALWAYS wants to go back to that home where we are all under one roof...and somedays, I do too. I pray you find your best answer.

If you’re asking the question, then it’s likely time.

No, you're not a fool. Maybe overworked, but not a fool. Do what you feel is right for you and your mother. Maybe time to increase the caregiver hours, to give you more breathing room? It's never wrong to want to care for our LOs at home, nor is it wrong to consider a facility. There are many factors involved in making the decision.

"It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility."

This recommendation should be reserved for those who are at the end of their rope, or will be soon. One person trying to do everything is going to burnout. The problem is many don't have the financial resources to pay for a facility and the LO doesn't qualify for Medicaid (most states don't cover AL/MC, many with dementia don't qualify for NHs.) For those who have help and want to do it, it might be better to keep the LO at home. For those who don't, one person can't do it all.

"At times, when she is whining incessantly, and I just want some space, I think that a facility is the answer."

Again, this may be resolved by increasing caregiver time. You mention late afternoon tends to be meltdown time. Consider some mild medication to help with this. Sun-downing is VERY common and generally occurs later afternoon. There are non-medication suggestions, but often those don't work well enough. The only time my mother was "out of control" late afternoon/early evening was due to a UTI. Antibiotics and low dose Lorazepam (during treatment only) took care of that.

"I know that she is happy here with me and my husband. Am I being an idiot for not putting her elsewhere?"

No, you're not an idiot for keeping her home. It's a struggle to know what's best, but if you can get someone who can help "entertain" her and find ways to keep her busy, it can still work. You need time for yourself, time to get out, do things YOU enjoy and be away from her "neediness". It's in many ways like having a toddler, but different. It can get under your skin, the repetition, the unending help she needs with ADLs, etc. The key is having the right resources to help. Since you say she's relatively healthy and okay financially, perhaps bringing in more assistance will help.

"My daughter, who has been here for the past year due to Covid, has really bonded with her grandmother. My daughter adores her grandmother and the time that she spends with her. The antics that my mother exhibits drives me crazy and my daughter is able to see humor and be compassionate."

That's a big help! Given they get along and she enjoys spending time with her takes some load off you. My grandmother (no dementia) lived with us part of the time and with my mother's sisters. I appreciated the time I had with her. Dementia puts a wrinkle into care, and it's too much for one person. With the right help it can work. Something staff suggests - rather than letting her antics annoy you, join her in the "moment" if you can. Sometimes there can be some humor in it.

"I know that she will continue to deteriorate."

She'll regress in time. She'll have more difficulty getting around and doing for herself. I'm a senior with physical limitations, and my house isn't safe for my mother to have lived in. Instead I found the best place for her, managed her affairs and visited as often as I could. At some point she may become bedridden. That'll require a lot more in-home care or a facility. When you really feel the care you and help can provide isn't working, then a facility might be the answer.

"To this day, I suffer that I wasn't available for those final weeks. It haunts me. I don't want to feel that way with my mother."

This is also a personal dilemma. My mother wasn't close enough for me to check on her daily or provide the care she needed. Hiring help didn't work, as she considered herself "fine" and refused to let them in. I selected a place close to where I live so that I could monitor her care and be there for her.

Sometimes, you can do virtual tours of facilities that are close by. Consider ones that allow for overnight visits, You may find this is a good compromise, You will know when you have found the right place, Here, the internet is your best friend. Have faith in you, You will find the right answer and the right compromise...good luck,

When you no longer want to, or when you are unable to.

When in a composed state, set yourself the triggers that signal it's time.

Some of mine are when...
- it makes no difference to them as to where they are or who is caring for them;
- I start to feel their (or my) safety is placed at risk (through behavior or lost communication);
- they become confined to bed/wheelchair;
- (sadly) my own tolerance fails to rebound over several days in a row.

Of course, in your situation you need to factor in the positives of your daughter's compassion and glean some of her inspiration - it sounds mutually beneficial despite the sacrifices (and you are unwittingly a role model for her also) - but when you feel your mother will receive better care elsewhere, you'll be best to follow through.

Tinder, I would wager that there are lots of folks who have elders living in their homes doing just fine. At a Zoom funeral recently, an acquaintance said that it had been a blessing to have her elderly MIL living in their home until her death. One of my cousins had her blind MIL live with her family; I never heard that it was too hard or a burden. (Both of the see families had a lot of caregiver hours; all the spouses were employed full time).

Folks who hang out here are the ones who are having problems-- either the elder is mentally ill, needs much more care than can be given at home, is unsafe due to wandering or causing fires, threatening physical violence.

Or they are simply folks who aren't cut out to be caregivers, have been guilted or shamed into giving up their livelihood and/or home, or who have had an elder "dumped" on them.

You are not a fool! Caregiving for a parent at home can be wonderful, if you have the space, aptitude and help required.

My personal take is that many elders thrive in congregate settings with multiple people to interact with and professional medical oversight. To each his own.

When my Husband was diagnosed with Alzheimer's I said I would keep him at home.
I later changed my thought process to "I will keep him at home as long as it is safe for HIM for me to care for him at home AND as long as it is safe for ME to care for him at home."
Thankfully with the help of Hospice and the VA I was able to keep him at home.
Thankfully he was also VERY easy to care for he was always compliant. And luckily or not with each "problem" that came along there seemed to be a solution that came with it.
So base your thought process on safety
Is it safe for HER that you are a caring for her in your home?
Is it safe for YOU that you are caring for her in your home?
Do you have Hospice in that will provide you with all the equipment and supplies you need? I can tell you right now without the equipment I got from Hospice I would have had to place my Husband. A Sit To Stand was a lifesaver (and back saver) then progressing to a Hoyer Lift.
I also said with many decisions I made about my Husband I was ruled by 2 organs. My Head and my Heart.
Safety is a Head decision.
Letting her eat a candy bar when she really shouldn't that is a Heart decision.

The internal struggle. Oh boy, I can relate. I don't have an answer for you as I haven't found one for myself. I agree...so many comments about putting yourself first, etc. That's great in theory. What about all the times the parent put us first? And...there lies the guilt. Yet, I write this from my Dad's kitchen table while wishing I was in my own home. Every morning I know I need to hire help but then I see him walk down the hall with no pants on, "leaking", (refusing disposable undies) and wonder if it's even worth going through the process. We just hired for my Aunt...2 shifts of 4 hours each week. Went through an agency and it's taken 7 mo to find a helper who is dependable and not using the caregiver job as a VERY temporary mean of making some money. I tried to "sell" the retirement living lifestyle to my dad 2 years ago. He flat out said he doesn't want to be surrounded with "old people". (He's 81, still works because he loves it, but has no interest in taking care of himself, his house, his finances.) He just doesn't realize the amount of time and energy he is taking. Things and people in my own life are being neglected. At some point, patience will wear out. I know I need to suck it up and hire some help, but it feels awful. Truly no advice from me...just wishes for a peaceful state of mind for you.

Don’t feel guilty at all ..the dementia gets worse & falling a lot will happen...as well as abuse...possibly physically too...I understand from others that if they die at home, then police come too to question you...as if you killed them. & I don’t, quite honestly want to be made to feel that way. I’m sure if she’s on her way out...& in a facility, then some special arrangements could be made . Hugs 🤗

Bless you. My mum lives with me, my husband and two children and has AD. I'm finding it harder and harder to care for her and it's taking over my life and my marriage. Mum actually wants to move out as she's frightened that living with us may speed up the progress of the disease as I literally do everything for her. She's forgotten how to cook, clean and her personal hygiene has taken a nose dive. So, and this is purely my personal opinion, think that it could possibly do your mum and you good if there is distance between you as you can re-establish your mother/daughter relationship rather then being patient/carer. I feel exactly the same as you - I'm desperate for mum to move into sheltered accommodation but once she's gone I know I'll worry about her! Mum does have a social worker but she's pretty useless and I feel completely trapped and resentful. Have you tried to speak to your mum about the possibility of respite to see how she gets on with a possibility of finding somewhere permanent or are you not able to have that conversation with her?

People may be more likely to express themselves on this site when the stress of caring for a loved one exceeds the joy of doing so. Is your husband supportive of keeping your mom in your home? You don't want to jeopardize your marriage. Are you comfortable leaving your mom alone for a few hours? Others have noted the potential dangers with dementia. Are you able to physically care for your mom without putting yourself at risk? If you can answer Yes to those three questions, then no problem keeping her in your home. Just be aware that your answer tomorrow could be different than it is today. Ask yourself those questions often. A No answer to anyone of them will tell you it is time to move mom. ( Suggest you look at facilities now so you are ready to make a move when conditions warrant.)

You have to live with yourself first. If you feel that you are doing the right thing by caring for your mother in your home, then do it for as long as you can. It doesn't seem to be causing stress for you or your family. At some point, she may need to have someone with her for more hours of the day. You may need to get another aide to do a part-time shift, or a full-time shift into the evening. They can help her get ready for bed and at some point she may need help eating. Take it day by day. You don't have to make any decision right now if things are 'doable.'

I sense that you are experiencing pain.

The first pain is the loss of your father. Since your lack of availability still haunts you, please consider dealing with this pain that is over a year in suffering. May I suggest attending a grief group like GriefShare. The members of the group are all experiencing loss of a loved one or stay to help others through the journey they have already taken. If groups are not your "thing", consider meeting regularly with a counsellor. Counsellors are available to meet online and in person. Check either with your doctor or community of faith for suggested counsellors.

Your second pain is seeing your mother deteriorate. You remember the vibrant woman who met the needs of others - specifically you. Please consider researching about the type of dementia your mother has (the one the doctor diagnosed). Alzheimer's disease and Parkinson's disease is progressive. Stroke type dementia tends to remain stable. With information, you can plan for your mother's care over the course of her lifespan with her healthcare providers and your family. You are not in this alone. If you feel lingering sadness over her decline, please process this with a counsellor.

Managing your mom's problems. Her memory loss can cause her to have anxiety which leads to antics. Please have her evaluated for anxiety by her doctor or a geriatric psychiatrist. One of them may prescribe her anti-anxiety medications that should help with taking the edge off her anxiety. A consistent routine will also help. Her afternoon episodes are usually called Sundowner's syndrome. With Sundowner's, the sufferer is more anxious as the daylight wanes and things don't look the same. This coupled with increasing tiredness make anxiety levels rise and folks are apt to act out. The anti-anxiety medication should help as as consistent routine and more light in the afternoon/evening. You will know it is time for another caregiving option when the needs of the family, your marriage, and your relationship can not be met since every moment is spent caring for your mom. If you sense rising resentment in yourself or your family members, consider it a sign of burnout and that something must change.

You should do exactly what you are doing. Your mom is so lucky to have a daughter like you to take her in your home to live. If people would put themselves in the old person's shoes, they wouldn't send them to a home.
When a loved one is sent to a home, it's like a death sentence. If the old person acts out or in your mom's case is needy, they just give them meds to make it easier on the Caregivers.
No loved one would want to go to an unfamiliar place that is basically only in it for the money. Sure you may be lucky enough to have a rare Caregiver that really cares but their far and few between as Caregivers get burnt out.
Your mom being at your home, is the safest, happiest, loving place she could be.
No one should die alone.
It is hard being a Caregiver but in your case your mom has money, spend it on your mom and hire as much in home help as you need to not feel overwhelmed.
You are deffiently doing the Right Thing by your mom.
You won't have any regrets in the end.
It's so sad for people to just send their loved ones away when they need them the most.
Bring in familiar surroundings is so important for people with Dementia and even in the end when they remember less and less, and may not even remember your name or who you are, they know a friendly loving face and it makes them feel loved and safe.

Prayers

It sounds like you are one of the people who might be able to manage your mother's situation at home. You can use some of your mother's resources to hire more help as needed. That is a fortunate circumstance. If that works for you and your family, you can keep your mother in your home longer than many people can.

The worse Alzheimer's disease (AD), the more care they will require. My mom's AD was so severe, I had to even manage her bowels, bathe her, change her -- she used about 6 diapers a day, tons of wipes and gloves. The last 3 months of her life required a feeding tube because I did not want her to die of dehydration and it kept her peaceful since her needs were met. If she did not have a bowel movement in 4 days she would be impacted, so I kept her bowels going every Tuesdays, Thursdays, and Sundays. This was achieved through lactulose. Her last 3 months of life, she was bedridden. It was incredibly stressful having to induce bowel movements while she was in bed. While kept alive with a feeding tube (which in itself IS a lot of hard work to care), and I managed her sugars very well with insulin (she was insulin-dependent diabetic), she lived to be 90 with 15 years of AD. Irony she did not die of AD--but the complications of diabetes. She had Stage 3 kidney disease for 10 years. She died age 90. The same would have happened to her even without AD.

Caregiving is very hard, and it is stressful...but I never regretted it. Mom was my entire universe. I love her dearly. And mom never did suffer...she was very peaceful and was on hospice for two years. They were great supplying me with diapers, bed protector pads, tube feeding, tubing, feeding pump, hospital bed, table, oxygen, and whatever else I needed. But I did all the care. We never had to open that "comfort pack" and her death was the most peaceful you can ever imagine. She never needed any narcotics or psychotropics and hospice came over daily when she was actively dying.

I walked mom everyday for five years. She loved the park. She had a special walker. TO this day I look at that park and I sink into a mourning remembering walking her daily. I miss her terribly and it's been 1-1/2 years ago she died.

Even with the twilight of her life, I kept her comfortable and I worked hard to sustain her. That is something I can carry with me the rest of my life. I did my duty caring for her, and she had a good life even with AD.

YOU have to anticipate what I went through and you need to learn how to care for someone who will become 100% dependent on you. Be mindful eventually they will forget how to eat and drink, and it can take two weeks to die of dehydration. And they will be awake if you go no feeding tube route, even on hospice. That is something you and your family need to talk about, but only use that as a LAST RESORT. Feeding tubes need a LOT of care, and not to be taken lightly. It took me over an hour to feed my mom before that. And I had to give her thickened fluids one teaspoon at a time. That took hours. I did this all day long. Now mom never bothered her tube. I still kept it covered with a tube top (for comfort) to prevent pulling on it while turning and cleaning her. Her feeding tube required a LOT of care to prevent infection and the tube patent. Most people cannot handle that.

Nursing home is a tough decision. Most Asians care for their own folks. That's part of our culture. I know most Americans do nursing homes. I took care of my mom at home since that's an Asian thing to do.

My mom lived with us for 5 years when she had Alzheimer's. I even wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." Like your daughter, I tried to find the humor and heart in the situation. We tried Assisted Living for about a week, but my mom just couldn't stand it. It was the same with a 1/2 day trial run at an adult day care facility, so Hubby and I became the "day (and night) care facility." During her last year, (about 8 yrs. ago), when it was getting rough, my husband said that whatever I decided to do was the right thing. If I decided to keep her here, fine. If we tried Memory Care, that would be fine too. Ultimately, we kept her here. I'd echo my husband's advice: "whatever you decide to do is the right thing." Of course, Covid visitation restrictions in Nursing Homes and Assisted Living facilities might influence your decision too. Best of luck.

I think you're doing a great job with your mom. It seems that there's more good than hardship at least at this time for your mom and family.
I'm wondering if your mom is experiencing sundowning later in the day. Perhaps her doctor can help her with this; I've heard that light therapy before 7 pm may be of help.

Hi Tinder,
I write from the patients point of view. I was diagnosed with Early Onset ALZ in June of 2016. Most recently my Neuropsych Exam, said I've moved to Moderate to Severe Dementia. My DW and I disagree with the results and we have an appointment to discuss the results with the Doctor in early June. The Doctor says I should have 24/7 care, my DW and I agree I've moved in to the middle stages, but not severe needing 24/7 care.
I've told my DW and all four of my children ranging from 40-14, that when I am at the point that I can no longer participate in the day to day activities of helping out in the house then it is time to put me in a MC or Skilled Nursing Facility. I also contend I want to be placed 100mi away from our home so that my DW and children don't think they have to visit me every day. My DW is 8 yrs younger than me and I want her to go about living life.
Two of our three children live in other states leaving our oldest in his mid 20's living at home and our 14 yr old. My oldest 40 lives in another state he agrees with my position we talk, but have rarely seen him over the last 15 yrs. I've told all three of my adult children, when it's time for me to go in to a MC facility, let mom do what she want's to go on with life and don't give her any grief if she wants to date, or divorce me and remarry. Our two 20 somethings understand, I don't think the 14 yr old is ready to hear this, but we'll tell her when we feel she's ready. We've enjoyed 27yrs together married and dating. She has a lot to offer another man. and I want her to enjoy the rest of her life. She's never had any medical issues, we've practiced our faith ever since we started dating.
My point is that, you must do what is in the best interest of you your DH and children, and what you believe is right for your mother. Do not let outside influences lead you down a path you don't want to walk on. I watched my maternal uncle who was a Priest die from ALZ and my stepfather die from ALZ, they both were in MC Facilities. I know they received the best of care and were placed in the best place for themselves. The difference is one of my sisters worked in the facility my uncle was in, and my stepsister, lived near my stepfather. They were still both worn in to the ground. I don't want that for my family, and I've shared these thoughts for more that 20yrs, so this is not jibber-jabber on my part. I want my DW and family to thrive. I hope you find this comment helpful.

I think you answered your own question in what you wrote. Everyone on this forum has different opinions on things and they can offer you advice but in the end, YOU have to make the decision. If you don’t want to feel like you did with your dad, and you would feel like you would be deserting your mother by putting her in a facility just because things were getting more difficult in caring for her, then perhaps you should take that option off the table and see what else you could do to make it easier to care for her at home. The relationship your daughter has with her sounds special and that needs to be weighed into your decision too. Your mom won’t be around forever and it seems your daughter cherishes your mom. That said, I totally get it that you are exhausted and that you wish you didn’t have to deal with all of this. There are no easy answers but it’s up to you to decide on what you can handle emotionally and then move forward with intentionality once you have made that decision. I think it’s the back and forth battle in your mind that is causing you so much inner turmoil. No one will fault you if you decide you can’t do it anymore...but you need to follow your own heart. I know you are dealing with lots of different emotions and that your world is in a continual state of resentment, anger, hurt, exhaustion, and frustration (LOTS of it!), and it all gets so old and is so draining....it’s hard to feel any sense of inner peace with all those things swirling around inside of you....so it sounds so attractive to just put your mom somewhere else and be done with it, huh....Easier said than done though.
Big decisions take time to work through. Spend some quality time with yourself weighing all the facts, considering EVERYONE involved, and looking into the future with the different possible scenarios. I think you will make the right decision.

You will know when you can not take care of her any longer. For me, it was when she kept falling and I could not pick her up off the floor. So we found a nice place for her and I visited her often.

If your efforts begin to take a toll on your physical well-being there will be less choice; in our case my mother with dementia is pushing the envelope by some sporadic bowel accidents and as a "women" my elder father expects ME to be the one to deal with it. SHe is uncooperative and I am recuperating from a major health crisis and surgery that took its toll on me. Scrubbing poop out of or off of things is not in the typical cardiac rehab program. I'd consider if I were you another day program that might have more tolerance or ability to handle her. That professionals couldn't speaks to the effort you alone must be putting forth. You are and have done all you can, so no guilt.

If mom is financially ok, then add more hours for a caregiver to give her attention. Try to use hours around the times when she is most demanding - morning, late afternoon, evening. Your daughter seems to be able to deal with it and you just have periods of time where it's more than you want - so use her money to give you some space.

You already suffer regret over dad so you would probably have same issue over mom. Use her money to give you a little peace for as long as you can.

Sometimes, the caregiver becomes unable to do the care. My mother was 36 when I was born. My mother was physically handicapped prior to her Alzheimer’s Disease diagnosis. My parents and my family purchased a home together for me to help care for her and do all the cooking. We had a nursery monitor in our bedrooms. We often were awakened by Dad saying that Mom was in the floor (upon trying to use her bedside potty). My hubby would then go pick her up and put her back into bed. My mother used a bedside potty for 20yrs because of her paralyzed L side. Her R arm and leg were very strong. Thankfully, she was already set up with a home health aid who showered her 3X/wk. Once AD started, my mother’s strong R side became weak. For years, she ate breakfast at her bedside sitting on her bed. She started falling back on the bed unable to sit. I herniated a disc in my neck trying to get her to the bedside potty. With my pending surgery, she went to skilled nursing care and died there 3 yrs later. At the time, i was homeschooling our son (young teen) and working every weekend as a pediatric RN. Already overloaded, I was unable to continue the 24/7 care.

In retrospect, wish I had put her in diapers and kept her home a little longer. While in the SNF, I continued to take care of her hair. After her Tuesday shower, I would come and “roll her hair” and put her under the hair dryer plus cut and clean her nails that were often dark with poop. I don’t know how I could have managed her health/doctoring if she had stayed home with me. If I thought a UTI had returned, I would find the nurse practitioner and tell her. Easy. The negative side: they left her in her wheelchair after meals instead of putting her in bed. She had lost the ability to sit up. I walked in several times to find her sliding out of her chair. She also had skin injuries on her legs.

Hindsight vision: I wish I had given up on the bedside potty and diapered her and protected her bed appropriately. Because she was bedfast, she was not a danger to herself. I could have kept her home a little longer.