Better to place sooner or later

rdc3

Hi. First time poster here. I'm taking care of my 68 year old mother who has Alzheimers. She has lived with us for four years and has had a bad year. Based on the levels I read about, this year she's progressed to somewhere between Level 5-6. She is needing more and more attention and assistance throughout the day and we've decided to start researching placement as we're still in our 30s with pre-teen and teenaged kids, whose time and attention we don't want to further sacrifice in order to be caregivers. In-home care isn't an option as our kids sometimes stay home alone and we're not comfortable having someone else here when the kids are here and we're not.

My mother is in good physical health and is physically able to move around with no problems. She needs help/prompting in order to do anything - meals, hygiene, etc otherwise she'll just sit and stare at the wall all day.

My question: Is placement better sooner or later? Sooner as in now, when she's constantly confused and needs help getting anything going but is able to physically handle herself. Or later, when she progresses further and needs more hands-on assistance throughout the day. 

Curious to hear the thoughts of those with more experience. I want to do what's best for her while also recognizing that my priority is my family.

mommyandme (m&m)

Welcome to this forum, hope you find it as helpful as I have for almost two years now. 

My thought is that since you’re thinking it might be time… it is time.  Your mom might really enjoy the social aspect of her new home while she still can.  Keep it close by and you and her grandchildren can visit often.  As long as funds can last of course.

Hopefully you have POAs in place already.  

So sorry that you’re in this place but glad you came.  

Beachfan

Welcome to the forum- - sorry you found yourself here.  I was able to keep my DH  home for a long time (11+ years).  He progressed slowly, but steadily.  That being said, there was only him and me here- - our grown children and grands live nearby.  I could not have managed him at home with young, active kids; the sacrifices, as you recognize, would be too great.  He had progressed to the point of no longer knowing us, home, friends, surroundings.  That made placement somewhat easier, if there is anything easy about any of it.

Make sure your legal ducks are in order, start researching and vetting facilities, and check in  here for advice, suggestions, resources or just to vent.  Nothing is off limits.  Best of luck.  It’s a rocky road.  

Cynbar

A lot of PWD do better if they are placed on the early side, they are better able to make the adjustment, benefit from the activities and socialization, bond with the staff. Based on your description, she would clearly qualify for placement. But it's not just about her, it's about what is best for your whole family unit. Your first obligations needs to be to your kids, and living with a PWD is no picnic and will only get worse. Start the ball rolling now, it can take some time to work out all the details and there are often wait lists at the better places. Find her a good place where she'll be safe and well cared for, close enough so you can visit. If you delay until a crisis hits, you'll have to grab the first place with an open bed and that seldom ends well.

BassetHoundAnn

I strongly agree with all the comments posted. I especially agree with Cynbar's advise that you need to make the happiness and safety of your kids and spouse the number one priority in your decisions. Someone wisely told me that with dementia things can go south really fast and you need to be prepared for that. The best scenario is to place your loved one in your first-choice facility before things abruptly deteriorate and you need to move them somewhere less desirable on the spur of the moment. Most of the good residences have waiting lists, sometimes extremely long ones. Now that covid visitation restrictions are lifting many families are seeking to place loved ones that they've been caring for at home. Hence the waiting lists are growing longer. At the very least you should be prepared with a plan-a and plan-b in case your mom needs to be moved somewhere quickly. Good luck! It's a long, tough journey.

glitterqueenscare

I agree with much of what has been written here.  I placed my Mom in MC in September and it was a tough decision. I still feel tremendous guilt sometimes.  She was shadowing, wandering, needed constant supervision for toileting, eating, etc.  I was faced with finding her around the clock care which is difficult to coordinate and pay for or taking a leave of absence from my job.  It was stressful on my marriage and although our kids are grown we were missing opportunities with them too.  In the end I found the best facility in the area and placed her on their waiting list.  I was told it would be as much as two years, it ended up being about 8 months before I got the call that there was an available bed.  Then I had to place her back on the list or pull the trigger.  I chose the latter but I was sick with guilt and still feel sadness, I think just about everyone does, but that might be more about the devastation of the disease and the impossible decisions we all most face.

Since placing her I have realized that the staff there have now absolutely fallen in love with my Mom.  She is so darn sweet it would be hard not to love her but if I had waited until all of her personality was gone that might have been different.  She is also bonding with fellow residents, walking the halls with other ladies holding hands, etc.  Does she cry and ask to go home?  Yes - sometimes.  More than once I have wanted to scoop her up and take her home with me but I think about how hard it was and realize both in home and facility care scenarios are hard and that I have to think of my own welfare too.

I see her several times a week and I love the feeling of visiting my Mom as simply her daughter again.  Not being her caregiver, the person who bathed her, fed her, toileted her, etc. just her daughter visiting with her for a couple of hours at a time.  It feels like being with my Mom almost like we used to be, a Mom and daughter hanging out together.  I think as her disease progression marches on I will be very glad to have a glimpse of that again. 

Whatever decision you make will be hard and putting yourself and your family first seems counter intuitive when you are a caregiver but sometimes its necessary.  Good luck and I wish you strength and peace as you make your decision. If you haven't yet check out "dementia careblazers" on YouTube.  She has some great videos that really helped me through the process of deciding to place my Mom. XO