My mother has been living in my home for the past six years. She is in good shape financially and in relatively good shape physically. Her state of dementia is severe. Most of the time, having her here is doable. I am able to have a caregiver during the day for about five hours/day. The struggle is what is the right thing to do. I have always believed in the concept of caring for our ageing parents. When I read the comments from folks on this forum, I almost feel like a fool. It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility. At times, when she is whining incessantly, and I just want some space, I think that a facility is the answer. Then, I agonize over how poorly it would work for her. She is needy, like a child needing constant attention. I had her in senior day care and she was kicked out because they couldn't give her the attention she was demanding. I know that she is happy here with me and my husband. Am I being an idiot for not putting her elsewhere? The internal struggle is so difficult because I know that having her here affects us all. 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. I can be that way much of the time, but then there are those days when she is going through her late afternoon craziness and I just want her gone. I know that she will continue to deteriorate. She has since I first moved her into my home. I just don't know what decision I can live with internally. For a little background, my father was dying and I drove him across the country and into a facility for his last month. He didn't want to die away from family. I saw him sporadically while he was still alive since it was an effort to find the time to be with him. That was two years ago. 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.
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.
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.
Hi- do you have a source for this info by any chance? TIA!
My mother's place was always coming up with activities, mostly in situ, but some outings as well, for those who could still manage them. Any time I visited (varied day and time, no warning to staff!), mom was clean, well fed and relatively happy. While she wouldn't participate in some activities (light exercise, oh no, I did that for years, I don't need to do that now!), most of the time she would join in.
Socialization is something that is recommended, to help keep the LO "stimulated" and active. One person at home doing ALL the tasks needed can't possibly keep the LO entertained most of the day! It is one of the benefits of choosing to use a facility. There are perks either way, depending on resources available. So it comes down to finances and how long one can continue to give every day. There's no real right or wrong choice, but all too often the choices are limited.
Your response about being a "burned out caregiver" is me all over x
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.
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.
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.
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