My mom has had Dementia for the last 3 years now and is progressing very quickly. I am one of 6 kids and the only one taking care of her. Two of my brothers live in Ohio (I'm in California) so they can't help much. But I have two sisters and one brother here who choose not to help take care of my mom. One sister did have my mom for about 9 months but that didn't go well and I ended up having to take my mom from her. At the time I thought "I can take care of my Mom". But little did I know it is harder than I thought. I am her only caregiver (with help from my husband) and it is getting difficult.
She is at the stage where she needs help with bathing, getting dressed, feeding her. And at this point she doesn't remember a lot and I have to constantly remind her. She gets angry when I give her meds or when she needs to eat, etc.
The reason I'm considering Assisted Living is because I just feel like I'm getting more fustrated and more sad and depressed seeing my mother like this. It is also taking a toll on my marriage (even though my husband is very helpful and understanding) Up until 3 years ago we were very active and now our lives have come to a complete stop (with the exception of a few outings). I always tell myself "she raised me all my live and so I should be able to now take care of her". Problem is I see my mom as a shell of a person now. NOT my mother. When I see her just staring off into no where or not recognizing family members it just breaks my heart. I have looked into facilities but I feel so guilty and my heart breaks just thinking of putting her in one.
I have talked to my eldest son, my granddaughter and one of my brothers who think it would be a good idea to put her in a facility. I think they're concerned that I will end up sick again like I did when I had to deal with my other son who has Schizophrenia (whom I've had to distance myself from because he refuses to take his meds or get help).
I want to sit her down and explain it to her but with her dementia she won't even remember our conversation. I talk to her a lot but she doesn't even remember conversations 5 minutes later. Do I just set it up at the facility and take her there or tell her first?
My mother was my first best friend and we have had a great relationship all of my 66 years. So very hard to let her go.
If you're in Southern California, I highly recommend ActivCare for memory care. My mother had to move to a nursing home after my dad died, because I simply could not care for her at the level she needed. (Neither could my dad, but that's a whole other story.) I first put her in a place where my dad had been on the board, but it was skilled nursing and not really what she needed. She was declining rapidly, but not in their eyes because she didn't really have skilled nursing needs -- her memory issues were the bigger problem that wasn't being addressed.
I found ActivCare through APlaceforMom.com, and it was a perfect fit. They can handle memory care all the way through end-of-life, and they were so helpful to me when it came time to tell Mom she was moving again.
I would wait if I were you, until she can have vaccination, and those she will be with are vaccinated. We are within 6 months of that now, likely, and you will not then suffer needless guilt were she to get covid. I suggest that only if you feel you can make it that far. So sorry you are all having to go through this.
Please don't do what I did keep her in you home your let her leave only until these nursing home can prove they are keeping their facilities in compliance with the federal guide lines. Which wright now is very questionable.
dealing with her facilities before she got the virus was almost impossible and to this day it has not really changed that much for the better.
like “ why is my child doing this to me ?
Doesn’t she get it?
it’s us that has those complex feelings.
Its all so tedious and painful .
isolation, we pulled him out. If you can afford 24/7 help in your home or an apt. I highly encourage you to do so. My dad has a reason to get up again and I can see him anytime I want. We set the standards, plan his meals, activities and provide real companionship. Even in your mother’s state she knows if she’s loved and cared for. You can’t pay someone to care and if you can’t get in to check on her it’s awful. Hate to be so negative, but it’s what we experienced. My dad is 90 with AZ and is wheelchair bound.
About 6 weeks ago, I felt myself "losing it" and simply unable to go on. It pushed me to call the geographically closest sib and say extremely directly that I needed him. Now. Shockingly he came - although only for 3 days. However, it gave me a feeling of some (minimal as it was) feeling of support and it got the attention of the rest of the sibs. They didn't do anything, but it somehow helped me to know at some level how extrememly difficult this is. I hired an in home agency for about 2 weeks during an especially bad spell but it was very, very expensive.
My reaction is, as far, far away as next summer sounds to us, get help from your family NOW to help you make it through the covid epidemic, and make a plan with your husband to get her into a facility as soon as visitors will be allowed again.
Best wishes.
If mom has the funds for it Memory Care is a great option unless you want to use her funds to hire caregivers that will help you care for her in your home. This also can be difficult.
Put "guilt" aside and determine what is the best option for the best care.
I was lucky and I was able to keep my Husband at home but I always had in the back of my mind that one day I would have to make that decision. I based it on 1 thing. SAFETY.
If it was not safe for HIM for me to care for him at home, I would have to place him in MC.
If it became unsafe for ME for me to care for him at home I would have to place him in MC.
I also equate safety as not just physical safety but mental, emotional safety as well.
I had an AWESOME Hospice team that helped me. I got the equipment I needed, the supplies I needed and a Nurse that came 1 time a week, more if necessary, a CNA that would come 2 or 3 times a week to help. I got education and support. If this is an option for you it might be one to consider.
Another GREAT benefit of Hospice is that Medicare will cover 1 week of Respite each year. (my Husband was on Hospice for almost 3 years so forget about the "rule" of 6 months or less. As long as there is a documented decline the patient will be recertified for Hospice)
With all that said you have another priority. You and your husband as well as your health. If caring for mom is not allowing you to me the wife, mom, grandma that you want to be then placing her in Memory Care is what you need to do to maintain your health. There should be no guilt.
If mom does not have enough funds begin the process of applying for Medicaid and when you look for a facility look for one that will keep her when Medicaid has to "kick in".
At each step we told our siblings and loved one what we were doing. We knew our loved one would not remember but we told her just the same. After the tours, she insisted she was not leaving her home. That we simply ignored and didn’t argue.
Finally we arranged the move. Using the need to replace her carpet as an excuse, husband took her out for the day. I packed everything she would need and identified all the furniture that would move with her, the movers did their thing, and when she arrived at the facility, her apartment was furnished and ready for her. Over the next few days we hung pictures and put out all the little things she loved. By the end of the week, she announced she had lived their for a long time and the place was home. In that, we were lucky, as many continue to complain.
The whole process took us about six months, including getting guardianship. Now we visit, in person if possible or by phone, if not, several times a week. We chose a “continuum of care” facility so her needs could always be met and are very satisfied with the results.
I bought a wireless bed monitor to put in his bed that will notify for help if he gets up from the bed. If you know a nurse that works at the hospital find out which facility has the least ER admits from a facility. I took my dad to the doctor and had him checked out. All immunizations, ears cleaned out. TB test. Memory test. Got all reports ahead of time. He fell 4 times the first month. He was falling at home too. The last time he broke his arm up at the shoulder. He is just starting to use it again. You will have MAJOR GUILT. I cried. I prayed. But now he is safe and clean and I can visit every day if I want. Get to know the staff and each shift. After moving her check if she can get on hospice. She will have her own CNA for care. Think on this. If you hurt your back or get sick, who will take care of her. We don’t like it because no one will care for our loved ones like we would. But this is as close as it can get. Let someone else do the hard work so you can enjoy your mom. And she can enjoy you.
Work out your own visitation schedule to allow time for yourself. And also time for your husband and family.
It will not be easy. But once she is settled it will be better for all. Pray and trust God.
God loves you both.
God’s blessings to you.
This is how I handled the situation with my own father, who had dementia.
One day, I pointed out to my father that his health was declining, that he was no longer able to take care of himself, do his medications, etc., and that he would be safer in a facility. I informed him that we were going to "check out" a few facilities "for future reference when the time came." So, we made it a day trip and paid a visit, and I paid for a nice lunch together.
So, after the visits, in a casual conversation, I asked him which place he liked best of the three - because I wanted him to "feel" that it was his choice. (Not sure how much he actually remembered about each place.) He said it was the first one. (In truth, it was actually the best facility - and it had different "levels" of care available.) So, I put him on the waiting list.
When a space opened up a few months later, I made arrangements to move him there and my husband helped. It alleviated my stress to know that he was in a good facility where he would be taken care of well.
The woulda/shoulda/couldas really take their toll but they will hound you no matter which way you go with this so please take that out of the decision. It isn't about what you think you "should" be able to do or even what you can do, its about what is the right thing to do. It takes years of experience and/or training to cope with dementia unless you have endless energy, a lot of good help, and dead on instincts.
If you have a good facility within a reasonable distance and the cost isn't a factor, this move will allow you to be her daughter again instead of her caregiver. Your "job" won't be over, as her daughter you still will be making decisions and keeping a watchful eye on it all.
Keeping her home with you as her primary caregiver is like reinventing the wheel. Each day bring a new challenge and you have to struggle to learn how to deal with it. Within a week you will never need that skill again and will be struggling to learn something else. The staff at the facility should have the background to react appropriately to the mood swings and other issues.
Your family's concerns about this affecting your health are not overblown. A little soul searching is due. Often its love, but as often it is stubbornness or pride that keeps us on the job...a job we are poorly equipped and trained to do. Other times it is finances. A good place is expensive but the cost of doing it yourself can be extremely high.
I can have a conversation with him about things way in the past as he can remember he use to be a Fireman and he use to ride a motorcycle he just has very short term memory loss.
I can visit him and he is happy I came by but 5 minutes after I leave, my sister can call him and he won't remember I came by. But I look at it this way, he's happy, feels loved, safe ect for the time I'm there.
I've hired 24 7 Caregivers for him.
I've also installed cameras so I can check on my dad and see how he's being treated 24 7 from my Cell or laptop.
I know that even tho Memory Homes make the appearance of being an awesome place but sadly they are not. They only tell you and show you what makes the sell of getting you to put your loved one there. Most people there are lonely, sad, depressed, scared, ect and they do not last long, especially with the Covid outbreak.
Most don't have enough Caregivers for all the patients and sadly since most of the patients can't report what's going on, they get left alone and can end up staying in wet or mess diapers for hours. They will lose weight because they either won't or can't feed themsekf or take too long to do it or they can't remember exactly what to do. My 96 yr old Dad only eats soft food, he thinks he can't chew and swallow stuff he use to like like meat, ect. Sbout a year ago I furst noticed that anything he would put in his mouth if he would feel texture to it, he would spit out, he first started with still wanting the food he use to eat and he would chew it but instead of swallowing it,, he would spit it out, So I stopped with the meat ect He would find everything...if he ate a blueberry waffle, he would spit the blueberries out, he would spit the outer skin out of any Vienna sausage, anyway, I changed his diet to just things he would eat and the most textured things he will eat is an egg scrambled or boiled and cut up and a pancake or waffle with syrup. Little Debbie mini muffins where chocolate is his favorite. He will eat mash potatoes and gravy, Oatmeal. Applesauce, Yougurt tho I tell him it's yougurt Pudding and yes I found it in chocolate and he loves it.
He eats anything that can be mashed like cooked carrots. Sweet Potatoes. Ect.
He gets his protein from milk & yogurt. And he loves ice cream.
He gets his fruit from juices.
And , he wants to eat every 3 hrs or so like a Baby. He doesn't eat a lot at one time but eats several times a day, even at night.
That wouldn't hsppen at a home. If you don't eat,, you don't eat and they'll just tell you the lived one is not eating.
If your loved one is acting up or giving them trouble they just have the Dr prescribe Rx's. They end up on so much med's, they're just taking up space but quietly until they die.
I've checked out places and know people that have worked in them and it's a sad situation.
If you have no other choice but to put your mom in a home, at least find one that will allow a camera installed in her room. I use Nest Cameras znd they're easy enough to install.
You mention you have several Siblings?
What about figuring how much it would cost to hire 24 7 Caregivers and have them all split the cost. If you do your research, you can find them at all prices from $10 an hr up. Don't go thru an Agency that charges you $20 an hr but only gives them minimum wage.
You can also hire a Live In which is cheaper.
My point is, if you mom can stay out of a Senior Memory Care Home, it would be the Best Choice for her quality and lingtivity.
If your mom has any money saved or a house, sale it and use the money for her care at home where she'll be the happiest.
Prayers during this stressful time of decision making.
It wasn't my husband's choice, he was at stage he didn't know what was going on, but he knew when it was time to eat, then he wouldn't eat much, and where his favorite chair was. The 3 weeks were hard on ME, not him, and after the time was up, I walked into the place, he was in a lounge with other people who were in wheel chairs and no one talking to each other, probably mostly unable to know what to say. He really didn't know me anyway by this time.
When I did visit, 4-5 times a week, I would often find him sleeping--not in his room, but on a sofa in one of the 4 adjacent living rooms. Try to wake him, no, leave him alone he wants to sleep. He didn't know he wasn't in his own home.
To me, the procedure used by my husband's facility was better and their demand was logical to me. He was safe there from wandering. Did he try to open doors, You betcha. But the alarm sounded as well as door being locked. He adapted.
Don't worry your family member with your feelings, just do it, make the decision, and go on from there. I visited after the 3 weeks and he still didn't know me, as he didn't before he entered the facility. He talked to me, but didn't complain on where he was.
I remember only too well when Mom became that "shell and not my Mom". We love them, but as their "caregiver" we must also be somewhat detached. That is extremely hard to do. It is our love for them that produces the "guilt" when we think about moving them into Assisted Living. I did it for Mom because I found that my ANGER over all the demands, not remembering, and her anger when I would do the necessary help (bathing, feeding, dressing, fetching her whatever -- and a whole lot more). I knew that I would not be able to stay her loving Daughter if I had to shoulder all the care.
I wanted to show Mom these places and have her visit, but it did not work out that way. It is not easy to do this, I guess I would say I was lucky when she was hospitalized and they said they would not release her to any form of Independent Living. While she was living with me that would mean I would have to give up my life as I had known it, my recreation time, etc. She could not be alone at all.
I found, with help of an agency, a wonderful place with caregivers that were outstanding. The totally understood Mom, Me and what what happening. While I still maintained POA and Medical POA, I was able to handle all that and remain the loving daughter. When I first moved her into Assisted Living I stayed away for a couple week (she needed time to adjust and it was recommended). After that I would visit a minimum of twice a week. All her Grand children, great grand children and more could visit on their own schedule and not worry about anything, but spending some time with her. And yes I had to do coaxing to get them there, but in the end they all now have memories. Mother passed just over a year ago and was 98.
It was not an easy choice, but saved me from being angry all the time, and not being able to give her the love she deserved. Even though in the last few years she was not the "Mother" I had known, she was still MOM. I then put myself into Therapy so I could deal with that quilt, anger and confusion over her care and who she had become. It has helped a lot.
It does really sound to me, if you are getting frustrated, hurting, depressed, then this may be the best answer for all of you.
Good luck and God speed.
My dad thought he was in a hospital on some days or a hotel on other days. He was always trying to pay his bill and tip the staff at meals. I don’t want to mislead anyone that this was easy, it was tough but there was no other way at this point as I was dealing with both failing parents on my own.
Keep in mind that if our elderly parents were in their right minds and still had good executive reasoning they would not expect their children to sacrifice their lives to care for them at home. But old folks don’t understand what they are putting kids through by expecting care to the grave. My folks were good people but didn’t have the slightest clue what it took to keep them cared for in their 80s.
Your mom will adjust in time. Best of luck to you.
Do all your research to locate a facility with a memory unit, get her POA and finances in order, all
first.
Tell her the no sooner then the day she is ready to move in.
If your mother can still make appropriate decisions for herself, you could ask her to choose between a facility and in-home hired help.
If her dementia renders her unable to make appropriate decisions, you should arrange for her placement in AL or Memory Care.
Having her in your home, even with hired help, is becoming too much for your own mental and physical health.
You have cared for her as well as you have been able to, but now you would both would do etter with professional help.
Find a place with which you feel comfortable, and make up whatever reality makes sense for your mom. Good luck. (A friend of mine in similar situation - her mom, a former teacher, thinks she's living in her old college dorm.)
I like your post, because you were honest about everything. Wanting to keep him home, riding the "dementia train", being insulted even that someone thinks you are less than capable, but in hindsight realizing that this WAS the best situation for BOTH of you!
I only find it difficult now because of the lock down. Between dementia, hearing loss, eyesight going and more recently a stroke, a visit is hard, but adding in the masks and keeping a distance for visits makes it worse. My mother didn't really "engage" during an attempt to visit (they were allowing pre-scheduled short visits in a cafe just inside the building - given the rise in cases, this will likely end for a while.) In chats with staff, she still remembers me (Oh her and those CATS!), but wearing the mask while standing 6' away, it isn't clear she even knew who we were. Can't use a phone due to the hearing, her window opens into an interior garden, so that's not an option. I have no idea if she could do "video visits", not being a computer person, with bad hearing and eyesight!
Comon' Vaccine! Hopefully staff and residents will be among the "first" priority, so maybe we can have visits again!
I understand what a dilemma this is for you and how hard it is as I've been in your shoes. I have no siblings - I'm the only one she has. She has 5 elderly siblings left, all in other states so they couldn't do anything even if they wanted to (which they don't).
I just turned 58; my mom will be 96 and we've also been very close. She had lived in the home I grew up in since 1968 and said she never wanted to leave her home. She asked me to "promise" her that I would never put her in a nursing home. I suspect because she came from a very small town and had visited some of her classmates in a NH 40 years ago. Back then they were not so great, so that image stuck with her.
I tried everything to keep her home. I went back and forth for 10 years after my dad died - it wore me out. I tried "Visiting Angels" - she wasn't cooperative. We had a caregiver for several weeks but, there was no money for the type of care she needed. We had to sell her house to pay for any type of care.
When she finally got the diagnosis of early stage Alzheimer's, the first thing I did was take her car keys away, bought a steering wheel lock (in case she had other keys I didn't know about) and told her she could no longer live on her own.
On weekends, my husband and I started visiting and interviewing facilities and during the week while he was at work, I did it on my own. I did not take her with us and I'm glad as we saw some very unpleasant, upsetting things that when we would leave, I cried and told my husband I can't put her in there.
Finally, I found two nice facilities near my cities local hospital. They didn't look like a nursing home (and they weren't), they didn't smell and I had to find a facility where residents kept their doors to their apartments closed. These were both IL/AL facilities. I made sure to keep her informed and then called one of her close friends and took them to take a tour of both places. I went with enthusiasm and she seemed fairly receptive. The first place was too expensive so we chose the second one. I showed her the apartment she would have and a month later moved her in. Was it easy? No. Was it necessary? Yes - I am not equipped to handle someone with Alzheimer's.
In April I received a call that she was near death from severe dehydration and COVID (due to what I consider neglect). I didn't hear it from the facility but, by an outside mobile doctor's nurse. I had her sent to ER and from there to a rehab facility. She could no longer walk or dress herself and off my husband and I went in search of a new facility where we would put her in Memory Care. Against what a counselor from the Alzheimer's Association said, I told my mom every step I was taking. She was going to a new place and having a nice, private one bedroom (it was smaller - she didn't need what she had before) BUT, I never told her it was in their memory care wing - I never told her she would be under hospice care (she had lost weight from not eating). I told her we would follow the medical transport upon discharge and had everything set up when she arrived. It's been 7 months now. She's quite happy there, I do a lot of window visits, she has several great caregivers who work with her and after a year of not doing any activities, she is now doing crafts, baking, going to the dining room, went to a happy hour with live music - it made me cry.
Facilities are buildings, it's the people who are the Administrators, nurses and support staff that will either make it good or bad. I have a great rapport with the staff and of course that makes them want to take care of her all the more. The young man hated to see my mom just stay in her room so he thought of a way to get her out. He says to her "Do you like coffee?" mom: "yes!" He says "Well, let's go get some!" and then he takes her to the craft room with "coffee" and the rest is history. He told me if it were his mom, he couldn't bear to see her stay in her room.
I wish you & your family the best!
I know, my dad spent 3 years in assisted living until he needed more care. It was a better financial situation for me to exit him from there and have him live with us, since I am retired.
If you can not take care of her, a long term facility seems best for her. You simply tell her that is where she needs to go. It is difficult, but that is best. She will cry, she will plead for you to keep her. She might even get hateful and say cruel things. Just be brave and do not take it to heart.
A long term facility seems best. There are nurses round the clock. After 2 weeks or 3 she will feel at home.
My husband doesn’t know anyone except me. He doesn’t know where we live , that we are married , there are nights he goes on and on all night about going home that the dog is alone . Our dogs all have passed years ago. Dementia is a horrible disease ,
the one really important thing to consider is covid , it’s running rampant in care centers . Many have passed away . You need to ask yourself if you put her in one and God forbid she gets covid are you going to let guilt eat you up .
They try hard to prevent the spread but they can’t keep it out.
I know all to well all the challenges of caring for stroke , bad heart , kidney trouble, diabetes, blood thinners , pull up underwear I change all the time.
I wish you all the best for you and your wonderful mother . I’m sure she is very blessed to have you as a daughter , many children want nothing to do with taking care of elderly parents these days .
God bless you for caring for her all this time. 🙏🙏🎄💕
Stop and think what would happen if you became ill, what happens to Mom then? Please don’t feel guilty.
I did not tell Mom where we were going for lunch, the day of check in because she would not understand. We enjoyed lunch in the dining room, staff greeted her and after lunch we walked to her room. I had been telling her for sometime, where ever she saw her beautiful fluffy quilt, that was her bed. Because she didn’t always know her own bedroom in her condo. I had the staff put her quilt on the bed while we were having lunch, so when we walked into the room I told her this was her bed and quilt. It helped make the transition go smooth.
It was the best decision I could make. Mom was 94 years old with Alzheimers. It had gotten that she needed 24 hour care. Yes seeing the changes in your dear Mom is very difficult but knowing she was getting good care and safe made it easier. Yes our Mothers took care of us when we were young and now it is reverse roll, with you being the adult and she the child. You making the best choice for her. I also found there were activities at the home so it gave her sociability she did not have with just me. Even with the covid distancing most homes have some activities with safe distancing.
It is not easy being the decision maker for your Mom, but you are doing it in love. Remember to be kind to yourself too. ❤️