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.
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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.
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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 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.
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.
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".
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.
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