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.
CNA (Certified Nursing Assistant- used to be called aide). High School education plus 2 weeks training. These hourly employees make $11 per hour.
Med Tech- 16 hours training after CNA training. Then allowed to give all meds, including narcotics, insulin shots and blood checks, over the counter meds. These employees make $12-13 an hour.
LPN (Licensed Practical Nurse)- High School education plus 1 year medical training. Supposed to be supervised by an RN or Physician. Most facilities have only this kind of nurse and no supervision.
RN ( Registered Nurse). 4 year college degree in Nursing.
Dining Room servers can be “Community Workers” which means the same people who help with showers and dressing also serve the food. Or if separate employees can be 18 or over and never worked in a restaurant. Same $11 per hour and no tips.
Background checks are required, but if the person has stolen, assaulted, or raped and hasn’t been caught or prosecuted, their background goes undetected.
ED (Educational Director) The Director is over the entire facility. A high school education and 4 years experience in a facility. These employees make over $100,000 a year.
How would you like for your loved one to be cared for by these people?
The really cheap facilities charge around $2,500 -$3,000 a month. Rates can go as high as $10,000 a month. And that does not include the “Community Fee” which is non refundable and can be around $2,000 and up to $15,000. Pet fees can be $500-$1,000 non refundable per pet.
What level of care can we expect from these employees? Many of them come from foreign countries like Africa, Jamaica, and others in the Carribean and have learned how easy it is to get these jobs with minimal training and time.
You cannot believe the BS marketing verbiage that is thrust upon you from the moment you make that first phone call or visit. Check the website ajc.com/neglected for a series of articles exposing this enormous industry. Also, Google AJC/ants for a case history of one resident and her death.
From a resident. My prayers and heartfelt best wishes for you and your family.
My 94 year old mother is in a memory care facility, a nonprofit associated with the Presbyterian Church. Yhe staff is incredibly kind and trustworthy. Family members, at least precovid, are given a key fob and can enter unannounced 24/7. Talk about transparency. My mother is extremely happy there. And PS, please don't base people's capabilities and kindness on their hourly rate.
As her adult daughter, you ARE taking care of your mother. Your realize she needs more help than you can provide. You are making sure her needs are going to be met, that she will be kept safe, and that she will be healthy. If you visit, she should also be happy.
Stop guilt-tripping because you realized your limitations and are doing something about that - making sure that your mom is well-cared for.
You ARE being a good daughter.
Choose the facility, set up her room with familiar objects and take her there.
This is rough. I'm sorry.
I edited this comment to second what Lauramay had to say. Get some professional evaluation done to make sure your mom is being appropriately placed or you will have to move her and that's very disruptive.
The Office on Aging may be able to put you in touch with someone who can evaluate your mom's medical needs and make sure Assisted Living is the proper placement. The Assisted Living sales office is predisposed to say yes even if her needs might exceed their ability to care for her.
Thank you.
Yes, you will be torn when it is time to transition your father into assisted living but as the old saying goes "nothing worth having comes easy" and you obviously want to be "friends" and a "son" to him instead of a "slave" or someone to be "vented" at. You can find ways to make things special for the both of you.
Change is never easy and always takes a period of adjustment whether it's a positive or negative change.
Just remember when that time comes and it's actually a reality "this too shall pass!"
May God grant you peace with the decision -
It is so unfair that the OP is the only one of 6 kids to take care of their mother. What exactly would you suggest that she do?
Put up, shut up and offer it up is NOT the answer.
Everyone's situation is different. But here's what I did after agonizing for about a year over whether, when and where to move my then 95-year-old dad in late-stage dementia to a memory care facility: I didn't tell my dad about the move, instead I just drove him there and he thought we had arrived at a nice hotel like we had done many times in the past. We ate a nice dinner together and I spent the night with him, showered him in the morning, and then we ate a hearty breakfast together. I watched as he ate lunch with his new friends and then I left while he was participating in an activity. Then I returned and observed him eating dinner. After the first day, I rode my bike the 10 miles round trip to visit him at least once every day (and my wife visited him a couple of times weekly as well) for the next 19 months until he died at age 97. During that time, I remained his primary caregiver, but with the facility's small army of aides and my daily bike ride I was a better rested, more fit and much more patient caregiver. An unexpected bonus was that my dad became more social than he had been in many years.
As it turned out, my dad didn't remember living anywhere else over the last 75 or so years, i.e. he didn't remember living with my family for the prior 3.5 years, nor any of the three homes where he and my mom lived for 70 years. However, almost every day he would ask me to take him home, but "home" was his childhood home where he thought his mom was waiting for him (or waiting for us, since he often thought I was his dad). I always told him it was too late today since all I had was a bike, but that we could go "home" in the morning after a good night's sleep and a hot breakfast. That usually satisfied him, but when it didn't, then we would walk the halls together looking for an exit and a ride "home." Sometimes other residents overheard us and wanted us to take them to their homes and I'd tell them the same things I told my dad.
I know the staff at some facilities advise family members not to visit for a while (my dad's staff did not), but you know your mom better than the staff does, and you should do what you think will be best for her adjustment. Like I said, everyone is different. Kudos to you and your husband for taking care of your mom. Best wishes.
OR- ask the facility to let you both visit for lunch and activities for 3 hours at a time . Do that regularly for a few weeks and soon you start to step out and she will be fine because the environment will feel familiar . Eventually you can leave her there overnight . No harsh barbaric shock because it won’t feel like abandonment.
best wishes to you and sorry for your struggles. Making quick decisions that will end up long term is not a good thing-no matter which way it turns out. Take the time to think and talk through things, visit facilities and talk to many people who have skin in the game already and learn from them.
Each family has to decide for themselves. Once I started having health issues myself and realized (& admitted) that all I was trying to do was really affecting me negatively, I knew I would be no good to either of them or my own family if I tried to continue.
It’s so hard and I still shed many tears but I do know in my heart that this was the right decision for our circumstances. The questions and concerns will be there but you have to consider ALL areas and what the current situation is doing and how it could/would change to have a different situation. You can’t anticipate everything but you must make a decision that is helpful and good for everyone. Even if it may take some time to be that.
Best wishes to you and please talk to friends or family who will support you, take even a little time now and then for yourself and know that you have shown honor and love!
This caregiving gig is much more difficult than most of us thought! I didn't think it through very well and would have embarked on a different path if I'd known more.
You're right - your mom is a shell of her former self and really is no longer the person who was your mother. She's gone. You have lost her to this cruel disease. I'm sorry.
While it is hard to let go, sometimes it really is for the best. You and your marriage have to come first. Your mom is going to continue to decline. Look around at places and find somewhere you are comfortable with and move her in. It will be hard. You will be sad. She won't want to go. But it will be best for all of you. You deserve to have a life too.
The stage she's at, as you described it, would be what I described as taking over your life. By the time you finish up dressing, feeding, bathing, it's time to start the next round! Fighting when needing to take meds is common, but just adds to your frustration. With dementia, they forget they take meds, don't want it, insist they don't need it and fight it. Staff at mom's place generally have to coax residents into doing things they don't want to do, but they do it often, so they are more used to it and better at it! Relates to bathing, eating, meds, doc appts, etc - they've seen it all, and in many flavors, as each person's journey with dementia is unique to that person!
"I always tell myself "she raised me all my live and so I should be able to now take care of her""
Yes, if she were just aging and needed some help, this might be doable. Dementia is another ball game, one that we never learned to play, so we have to learn the "rules" as we go, but the rules can change daily!!! It really is something most of us are totally unprepared for and are like fish out of water as it progresses.
"I have looked into facilities but I feel so guilty and my heart breaks just thinking of putting her in one."
Most of us would rather not go this route, but if you take the time to check out all the places you consider (hard to do the full assessment we often recommend, due to the virus) and choose the one that feels right for your mother, you can go back to being the loving daughter and when allowed, you can visit. She'll still be that "shell" of your mom, but you can see her, hug her, squeeze her hand and show her love instead of fighting with her to take pills or a bath!
It is also good that you have the support of at least some family members, and that they have concern for YOUR well-being too. Too often we hear about family who don't support the person asking for help here.
While it is natural to want to explain everything to her, as you are aware she won't remember the discussion. Sometimes a few things said might stick with her, and this could be just the negative emotional feelings she might have. I personally wouldn't discuss it with her, or at least hold off until the day of the move. My mother was still more "with it", mobile, able to mostly care for herself, but it wasn't safe for her to remain there alone and she refused to let aides in. She was dead set against moving anywhere, esp AL, even though her pre-dementia plans included AL! So, there was no discussion. We had to come up with a ruse to make the move happen. Not happy at all, but she went with my brothers (I did all the other work, but chose to stay out of the move itself.)
"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."
It is hard, really hard, but you still have that relationship, in your heart. Remember all those good years! Realize you aren't letting HER go, just the "shell" of her.
If possible, use her funds to hire some help for yourself while you search for the right place. The good ones might have a wait list, so get on those. By the time you settle on one, perhaps the vaccine will be here and allow visits!
Perhaps you can explain to her that you are unable to do for her everything you would like to or that she needs. Thus you need to get some help. She may not fully understand the need to move, but assure her that you will be checking on her frequently and looking out for her safety and well-being..
Do not, for a minute, think It will mean the end of your great friendship! In fact, impaired though her recent memory may be, she will always have past memories, probably quite vivid, that she cherishes...and so will you. It may help to remind her often of the past times you shared. Reliving favorite memories can be a healing and bonding experience for you both.
My advice to you is she doesn’t need to be told where she is going. The facilities know how to help you with the way to move her there and will give you a lot of feedback. A memory care unit deals with dementia and the residents will have more personal care and attention. You can’t keep up with her needs at this stage 24/7. You don’t need to feel guilty either. I know you will probably, but this decision would be the best for your Mom, first of all; and you and your husband, second. My husband was supportive but still working.
My parents had been going with me visiting facilities for 6 months prior to their move. I wanted them to have a choice, but your Mom is past that point. Visit facilities and enjoy a meal as they want you to experience the daily treatment and meals your mom would receive. Please don’t feel guilty.
I felt the same as you do about taking care of my parents because they took good care of me growing up. Many caregivers that care for their family member receives pay, but I could never except pay for caring for them. My dad wanted to pay me, but I refused. It was my time to care for them. My mom died from end stage dementia exactly one year to the day they moved into their little apt. at the facility. She was needing memory care at that time, but her body began shutting down rather quickly. Her mind also went down very fast. She no longer wanted food, maybe a little water was all she would take. The doctors suggested a feeding tube, but their were many complications with that for a dementia patient so didn’t want to put her through any of that. She was in the hospital for three days and could no longer walk or get out of bed by herself after the first day in the hospital. She ended up being restrained as she was hallucinating and began physically fighting with four nurses( two of them were male and the other two female.) She thought they were trying to kill her. Watching her decline rapidly literally put me into shock. I knew when I took her to the ER after seeing the doctor, that this was going to be the turning point for mom. I talked to the doctor about time for Hospice and he said yes it was. Dad was included in all of our decisions for her. They had been married for 70 years. She was transferred to a Hospice facility where she passed away 4 days later. My dad and I were with her through this and she was medicated because she could act out physically and might hurt herself or others, and they legally couldn’t use restraints. I explained everything to my Dad and he understood but it was painful for both of us to watch her decline. With my Dad’s heart issues, I believed I would loose him before Mom. My Dad missed her so much that he died 2 months and 7 days later. I remained with him too. I took him to the ER for dehydration and 8 days later, his mind was gone. Rescue had transferred him to a facility for Hospice and as he was being checked in he coded. They both had DNR orders. Do not resuscitate orders.
It has only been three years and the pain and grief remains with me. I have been in the medical field all my life, but that doesn’t make it any easier. I am sorry I have gone on so long but I still am grieving. I wish all the best for you as you travel down this difficult path. Making these decisions are difficult, but you will do what is best for your mom. That is what will give you comfort later on. May God give you peace and comfort.
I was pleased with Sunrise Assisted living. Some of the caregivers were better than others, but that would be expected. They were safe and well taken care of. At the end of the day, I could go home and sleep knowing if anything happened they would call me or the facility would call me. I was only 10 to 15 minutes away from them. If I had to do it all over again, I would choose this same facility.