I want to go home!

I know its hard. and you know, unless we have specific training in the nursing field, we all only can do the best we know how.  The nurses in these facilities have training and know what to expect and how to handle most things.  They see it every day.  For us, it is hard to put a loved one into a place that is different that what our parent is used to.  In time they will adjust.  IF your parent understands you on the phone, call her every day for a week or so.....then only call every other day and wean yourself down to maybe once a week......and visit thru the window maybe 2 or 3 times a week.  With this virus thing it is hard.  My mother and I saw my dad last in early March when after things shut down.  Unfortunately my father could not use the phone anymore and would be off and on feeding himself.  The last time we saw him was the day the main nurse called and said he had stopped eating and had lost weight more than usual......it was his time.  They left us come in (all geared up) to see him before he passed.  So.....don't be hard on yourself.  Visit a couple time a week thru the window, and call.........then do some gardening, put a puzzle together, do something to take your mind off when you are not seeing/talking to her.  It will be okay.  I wish you good luck

Bless your heart, Gracie. I just did exactly the same thing with my mother. Because, all I heard day in and day out, "I want to go home, who can I call to take me home?" She would go through address books, looking for phone numbers. She would pack her things and sit by the front door waiting for someone to come and "take her home." So, Covid testing, and then I delivered my dear mother to memory care, and couldn't go in with her. It's heart wrenching, I know. I sat in the car and cried. Thankfully she was on the first floor and I got to go around to her window and talk through a screen to her. Of course, she was confused, but the attendants were so reassuring and she latched onto one of them. I sat at the window for 30 minutes, and then made 3 or 4 calls to the facility that day. By the next day she had already made a friend and was singing and clapping. They did text me some pics so I felt better. It's the hardest thing to do, and no one really understands the feeling until you actually are the one having to do this. I can say from my experience, my mother is way better off in this facility with all the activities and professionals who know how to handle her than she would be otherwise. It's been almost a month and I know for sure that I made the right decision. When I have been able to see her, her nails are done, she has nice clean clothes on, and she has even gained some weight. Know you are doing the right thing, even in this Covid time. I had a friend of mine tell me that it was a loving act, you are taking the responsibility of making sure your mother is properly taken care of.

Dear Gracie, I haven't been a caregiver as long as some of the other folks in this forum, but there's one thing I've learned on this difficult journey......there's no right or wrong if the decisions are made from the heart. Each situation is unique and we're all just trying to do the best we can for our loved ones. I helped my father stay in his home for three years, from a distance of 250 miles, when he refused in-home care. I now care for my husband, who has Alzheimer's and Parkinson's, so I know first hand how the emotions and behaviors can change from one minute to the next. Please be kind to yourself and trust your instincts. We all know our strengths and limitations better than anyone else.....listen to that little voice inside and know that it's o.k. to take care of yourself too. I know the day is soon coming that I will need to make the same painful decision and I pray for strength and peace in the days ahead for us both. You're a good daughter. God Bless you!

Imho, having had to care for my mother away from my home and state and move in with her and her home and state, I know how rough caregiving is. Praying for you and your mother, especially since the Novel Coronavirus is a part of it.

HI, Gracie, sorry to see you go through this with your mother. Please focus on what is best to do using the help possible. COVID-19 is far worse because it attacks organs and may result in lifelong disabilities for surviving victims.

My mom had Alzheimer's and dad was in end stage kidney disease. Years before both got sick they had alway expressed their wishes to remain in their home. It wasn't a simple task. Obviously neither one of my parents knew in their later years they would develop such serious health issues. In the early stages of Alzheimer's my dad became my mom's object of wrath. It was horrible and for about a year we had to place her in a assisted living but my father visited her every single day. And he reminded us every single day about bringing her home. My dad finally gave us a deadline and said like it or not he was bringing my mom home. It wasn't easy but we did the necessary improvements to the home to make it work and hired a 24 hour caregiving company. After going through a couple of caregivers we finally were blessed with Anna and Joy to care for my mom and dad till the day dad passed followed by my mom 9 months later. I'm not saying this arrangement didn't have its many challenges but looking back I'm so glad my dad dug his heels in and insisted we honor their wishes to be together in their home. Hiring the 24 hour caregiver was the key to making it all possible. God bless you and give you the strength and wisdom you need to help your mother.

I’m so sorry your going through this. I’m going through the same thing. Me and my mom were close. But Alzheimer changed that. Her personality changed and she became depressed. After my dad and brother passed away I couldn’t. care for her in my house. I put her in AL facility. She thrived there but then her mobility and dementia got worse. She’s in memory care and angry a lot. Doesn’t understand the virus. Thinks I don’t want to see her. Lately she’s been blaming my husband for all of this. I just wonder if she was home in my care would she still have anger issues. Physically I couldn’t care for her. And I have no other siblings. This place has been so helpful in easing my guilt. Good luck to you. Wish we all lived close so we could have a support group. No one teaches you how to deal with Alzheimer. And it’s not just about memory problems.

take her home to live with you

Gracie, the same thing happened with my Papa. He went into the hospital, then Rehab. The very next morning, the facility went into lockdown. He didn’t even have an outfit to wear since he was transferred in a gown. We brought clothes to the door. So we haven’t seen him since March 8th.

In his case, we think it’s been beneficial for him to be isolated from our daily visits. It’s allowed him to feel at home there, even though they are confined to their rooms the majority of the day. So now, he depends on the staff there instead of us. That’s good, because Rehab turned into permanent placement.

They're not really getting health care in the assisted living and memory facilities. They have their temperature, blood pressure, and oxygen checked every day, but that's about it. If a symptom is not really obvious, in an easily seen part of her body like her face or hands, it will be missed by aides and even nurses. If they are not allowed to be transported out to a doctor for a complete workup or specialist evaluation, they are not getting health care. If vision, hearing, cancer, cardiology, and other specialists are not coming into the facility, the residents are not getting health care. Just mentioning this because it's really hitting home with me. My mother has been in memory residence for a year. She has not seen a doctor face to face since January, when I took her to opthalmologist and cancer checkup. Nurses check on her every day in the memory residence, but this is not the same as health care. For a frail 82-year-old to go for 6 months and more with no health care sounds like a bad idea. This is a factor in the decision making for sure.

Hey just so your update and that she is complaining about the food! That's wonderful! I mean seriously, if she's able to focus on that, complain, I'd take it as a good sign at least in this moment....hoping for no falls and things going better...

It doesn't seem like you have much of an option. You are in that space...between the rock and the hard place. I'm so sorry. I don't know what other options there might be aside from getting some private hire help in to help you with her if she stays at your home for now, until the facilities allow regular visiting again. And with the numbers increasing who knows when that will be. I think it's beginning to get hard for all of us. And, if you do have someone to come in...you bring the risks of that person coming into your home to yourself and/or your own family. My heart is breaking for you...I don't get along well with my own mother who has dementia and if I had to do this, in spite of it all, I would feel similar I'm sure. Will keep you in thought...

Would it help to get her videos of her favorite movies? It can help soothe anxiety, no commercials to worry about.

This will not "kill" you but being a full time caregiver might.
You are doing what is best for mom and for you.
Do not feel "guilty" Guilty is an emotion or feeling that we project on ourselves. No one can "make" you feel guilty. You can BE guilty if you have done something wrong, But if you are making the right decisions for the right reasons there is no reason to be or feel guilty.

I’m so sorry that your mother and you are going through this Gracie. When my mother was alive and had issues getting up and going to the restroom (and had more toileting issues once in the restroom at her Memory Care Facility), they installed a mat by her bed that would buzz the staff and alert them she was getting up. They’d come help her before an issue arose. Something like this might help since your mother is a fall risk. They could know to come stand by her side so she doesn’t fall again...

The best gift of love is to let her go.

Have you checked into PACE program or live in helper etc. depending on insurance and income there is help out there.

You are making the best decisions for your mom. She does not understand because mentally she is a child. My mom and aunt both have dementia. My sweet daddy had it too and passed June 4 at the age of 85. Right now we are working with sitters and home health care from Concierage thanks to VA benefits. Its a very hard time of your life. Please take care of yourself. This covid is a nightmare. Will pray for you to find peace and comfort.

I cried when I read your situation. I can see to write now. My mom passed March 10 and I was her caregiver for 4 yrs and the last 6 to 8 mos her dementia worsened fast and steady. She was very difficult. And now she’s gone. That isn’t something to look forward to but it will happen, maybe sooner than you think. She was healthy, as much as she could be on dialysis. The same day she got “good to go” from her doc she got sick and died two weeks after going to the hospital later. Im glad I kept her home, luckily she missed Covid, but these last months going thru everything she owned has been brutal. I’m just saying... this/she won’t last. I learned that as dementia takes hold her health will deteriorate too. I couldn’t put my mom in a home. You may not be as lucky with Covid next time. Good luck. You’ll do what you need to do and just don’t second guess or let any guilt creep in. Love and light Sabrina

Well mixed bag. Both covid tests went ok. Both negative, we got the results of each in 24 hours. I had contacted her Neurologist for best way to handle her elevated anxiety after the packing breakdown. He gave her a prescription of Xanax to take one low dose that morning. They have temporary prescription for the first few weeks only if needed. So far she hasn't had any more.

The hand off went ok. She went with the staff member to look at the garden while I gave her meds to the nursing staff. She was still ok in decent spirits when I video chatted later that day; the staff initiated the call because she was arguing about her meds, and wanted me to tell her it was ok.

However, at 915 the next morning, I got the call from the facility . Your mom has had a fall and hit her head. Do you want us to call ambulance or do you want to take her. Best guess she fell out of bed or got up too fast and fell when she woke up. So I picked her up, she had a goose egg on back of head.
So after spending morning in ER, CAT scans, XRays, and blood work later, everything deemed normal and OK by drs. Stopped by Sonic for a burger with her on the way back and had to drop her off again. She wasnt as easily distracted this time, had to tell her I need to move the car. Decided to wait until next day to call.
But wait, the fun wasnt over yet. At 930 PM, I get a call. It's from the county EMS. My mom had tripped and fell somehow again !!!!!. This is not usual for her. He told me her vitals were stable and he did not see any other injuries except the one from the morning. I refused transport. Told the Memory Care manager I wanted a call once things settled down.

There was some protocol they call EMS if a resident is on blood thinners and falls, which I get but she is on no prescription blood thinners. But she does take a low dose aspirin everyday, which meets their criteria. Thinking about asking her doctor if she can stop, don't want her exposed to all these emergency workers unnecessarily. They told me they wanted her to wear her tennis shoes, not her mules. We went for a walk almost every day when she was at home for me. I watched out for uneven ground or steps, but she didnt have any issues walking in those shoes. They said she was pretty confused yesterday but she'd had a hard day. They had put her in a neck collar until xrays came back clear and that really upset her. Neck in a collar, mask on face, she was super uncomfortable .

Talked to her this morning and she seems ok, no complaints about hurting. Didnt like the breakfast today, and trying to whisper about the old people with problems. She has no comprehension about her own issues.

I have just done the same thing basically. My mother resides in a CCRC AL, which has been on lockdown since 3/11/2020. She had a stroke and stayed in the hospital where I could stay with her. Today she went back to the SNF of the CCRC where she was living. They will not let me in. I am beyond angry with this. No words. We are in VA.

I'm sorry Gracie. I know that must have been so difficult, but, you know it was the right thing. It sounds like the MC staff have things under control. Try to get some rest and focus on staying healthy. My LO was very content when she got to MC. In fact, the staff unpacked her as I signed paperwork. She made fast friends with her new roommate and it was as if she knew she was home. They were able to provide the 24/7 care she needed and I think she sensed it. She seemed to relax. Before, she had been very anxious. I hope you'll get good reports on your mother's transition. Please post about it.

Thanks everyone, needed to vent. Lesson learned, I wont be doing the bringing her home to stay again. I've had to learn the difference of how I want things to be and how things are capable of being. My mother's dementia has progressed so much in the past year. Things that used to bring her joy now often confuse and agitate her.
Used to love game shows, but cant follow and then the commercials just confound her. She thinks she knows the people and if its a commercial about a medication, thinks a friend is sick
Used to love looking at photos and reminiscing but cant remember who the kids are and then when she sees photos of family and friends that are passed away thinks they are alive and worries about them wants to call or see them
Cant remember her husband is dead and is distressed when is isnt around.

She ALWAYS knew when I was lying as a kid and she hasnt lost that superpower now. So my attempts at distracting or therapeutic fibbing often just make things escalate.

Her neurologist prescribed Xanax temporarily. One pill tomorrow morning before the move, and then just as needed over the next few weeks to help with the transition.

Changes like the move to AL then the change back home caused a lot of anxiety for her. Hopefully this will help.

Its the best place for her. Just wish I could go in with her and get her settled personally. A staff member will take her in. I cant go past the front door because of covid restrictions. Hopefully she doesnt balk. We didnt even get to move or decorate with her things from her AL room to Memory Care room. Their Maintenance people did it.

tomorrow morning it will be settled out.

I’m sorry Gracie. It’s hard, but you’re making the choice to care for your mom in the best way you can figure out, a way she’ll be safe and you’ll still be able to advocate for her. I wish you peace

No, it will not kill you. You'll be fine, and so will your mother. This particular situation will remind you not to take mother out of the MC the next time she complains. Because they complain about SOMETHING all the time. Part of it is the dementia, part of it is the personality, and part of it is the need to have something to talk about.

My 93 y/o mother has been in AL since 2014, and in Memory Care since May of 2019. She did not leave when COVID struck; I could never take her home with me for about 100 different reasons, mobility issues being a big one. She survived just fine, with phone calls, video chats and now window visits for 20 minutes every Sunday. She gets to complain about all the 'stupid morons' who live there with her, all 22 of them, and how bad the food is (in spite of her continual weight gain every month), how there's 'nothing to do' and so on and so forth. She saw her doctor today who gave her a clean bill of health.....her only issue right now is chronic neuropathy pain and so her pain meds were upped as a result. The staff takes care of her every need, her brief changes, her soiled linens every morning, her constant need for toilet help, EVERYTHING.

Stop feeling guilty & realize your mother will get more comprehensive care in the ALF. You can go back to being a daughter instead of a care giver, and you can take your life back now.

Call her, visit when you can, send chocolate covered strawberries.......my mother loves that. Bring her a new blouse or 2 once in a while, and blow her kisses from afar if that's all you can do. It WILL work out and you'll both be fine.

Good luck & take care of YOU now, you deserve to

Yes. This is going to hurt. But there is utterly no choice. You are going to have to accept the pain and the tears, because there is no choice.