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Recently, Mum got lost on her way to my house. We live just a mile apart.
Fortunately, I located her using Find My Friends and took her to her doctor’s appointment. My strongest feeling was relief. It could have been far worse, and I was grateful to be there.
On the way to the appointment she acknowledged being lost. She recognizes my house by the tall Italian cypress trees out front, but she never made it to our street. She spoke about the changes she knows are happening to her.
Then she asked me to help her stay in her apartment. She doesn’t want to move into memory care.
I told her we would do our best to make her apartment safe, knowing we’ll need to reassess as her needs change.
Mum moved into an independent living facility about seven years ago, partly to avoid becoming a burden to her children. She made a substantial, nonrefundable payment for her apartment and continues to pay a significant monthly fee. She had planned ahead.
But independent living has its limits. Emergency help is available, and memory care is offered at no additional cost in a different building. Moving there would mean leaving her apartment, where ongoing care isn’t included. For now, we believe family support can meet her needs: being available, taking her to appointments and noticing when something once straightforward becomes difficult.
Over the past year, since Tory and Jonathan passed away, my involvement in Mum’s life has increased. Caring for her stretches across all 365 days. There are occasional breaks, though usually brief.
My husband, Joey, is a big help. Other family members have helped for a few days, which I appreciate. When Joey and I go away for longer, arranging support becomes more complicated.
It can be worrisome and tiring. I want to be there for Mum, and I also want time with Joey. Making room for both requires help.
Hiring someone is one possibility, but in-home care is expensive, and Mum feels having someone following her around would be invasive. She wants to retain control over her days.
Elaine asked what we would do if I didn’t live nearby. Given Mum’s reluctance to accept outside help, I believe we would need a rotating family schedule so one of us could be with her. That would place demands on our time and disrupt our plans. But she’s our mother, and I feel responsible for helping work through those difficulties.
Her wishes matter. So does being honest about the changes we’re seeing. We’ll need to keep talking with Mum and one another about what’s working and where she needs more support.
I don’t want regrets. I want to know I did all I could for her. That includes asking for help and sharing the responsibility. It takes a village, even when that village is only a handful of people.
This experience has made me consider my own future. Retirement planning includes where we’ll live and how we’ll pay for it. Mum considered both. But who will we turn to for support, and how willing will we be to accept it?
I can’t promise Mum she’ll always be able to stay in her apartment. I can promise to listen, stay involved and work with the family to help her.
That day, I was relieved to find her and be beside her as she told me what was happening. For that moment, she didn’t have to work it out alone.
As an outsider looking in the logical answer would be to switch the burden of daily care for your mom from family to a paid professional care giver, at least until her assets are completely exhausted. It may not be her first choice but at any stage of life it is selfish to insist on having exactly what you want, regardless of the impacts on the lives of others. This is exactly what my parents did in their later years. We helped in any way we could but they posed zero financial or decision making burdens on us. They chose their own facilities and care givers and handled all the costs involved. Even when they were in far worse shape physically and mentally than your mom.
Steve, I’m glad your parents were able to make those arrangements. Mum also planned ahead, moving into independent living partly to avoid becoming a burden to us. Memory care is available at no additional cost, though it would mean leaving her apartment.
I don’t see her reluctance as selfishness. She’s aware of the changes happening to her and is trying to hold on to familiar surroundings and some independence. That doesn’t mean her wishes can determine every decision, or that family can provide unlimited care. We’ll need to balance those wishes with her safety and what we can reasonably manage. Paid help remains an option as we work through that.
When I read stories like this I think how fortunate Connie and I are even considering her several physical issues. However, I do find the discussions depressing and a bit frightening.
I look at this issue from the inside out. Our children are ages 56, 55, 52 and 51. I wonder if they have similar discussions about us.
So far so good regarding our cognitive abilities. We have a few friends who have not been so fortunate.
I am grateful our children still ask us for advice and rely on us for transportation, errands, etc. on occasion. In other words, they still trust us.
Good fortune is something to be appreciated.
As far as HD goes, if I start agreeing with the majority of writers and readers, you will know I’m slipping. 😱
Dick, I appreciate hearing this from your perspective. I can understand why these discussions feel unsettling. Your comment about your children still seeking your advice reminds me how much it matters to feel useful and trusted. I want to keep that in mind with Mum as we work out where she needs help.
And I suspect you’ll be keeping the rest of us on our toes for quite some time! 😀
Andrew, it’s a rewarding, but difficult stage of life, when we have to step up for our parents. I can relate to your mum getting lost. My mum suffered a TIA when walking home to her house, she couldn’t remember how to use her door keys and was confused about what she was doing. Thankfully, somehow, she remembered that I lived close by and turned up at our door in a distressed state.
I freely admit to enabling my mum to stay in her own house much longer than was practical or safe. I think it was guilt or feeling sorry for her. The cost was not only monetary for caregivers but the consumption of nearly all my free time that I spent visiting and caring for my mum…my family never had a vacation for a few years because I had to be there nearly constantly so she could live at home. With hindsight I made bad choices and endangered my mum to honour my mother’s wish to remain at home.
I’m thankful the choice was removed from my control. During the early days of COVID, mum had a medical emergency and had to be admitted to hospital. Upon her recovery the elderly care social workers and doctors assigned to my mum refused point blank to discharge her home. It was the push I needed to organise placement in a memory care unit.
I’m glad you’re thinking about your mum’s future care needs, I wished I had done a similar exercise before getting drawn into the situation I found myself.
Mark, thank you for being so candid. It must have been frightening to find your mum at your door in that state. I recognize the pull you describe, wanting to honor her wishes and feeling responsible for making it possible.
Your experience gives me pause. I’ve promised Mum we’ll do our best to help her stay in her apartment, but I need to be honest about when that may no longer be safe or manageable. Your account is a reminder to listen to those who can assess her needs with a little more distance than I can. I appreciate you sharing something so difficult to look back on.
Andrew,
I’m sorry that you are going through what our family experienced with my parents and my twin brother, and to a lesser extent with my mother in law. My mother had Alzheimer’s for about 15 years before she passed. My father was very dedicated in caring for her, but I remarked to my wife over the last five years that the stress of caring for her was resulting in him speeding past her in decline. He died about six months before her.
We tried to get them in home care, or into assisted living as they were requiring my sister to constantly drive 45 minutes to take care of their needs. Unfortunately when we insisted they move into assisted living they were not cognitively able to build relationships with other residents. would I’ve correct that one reason your Mum picked the facility was because of the availability of memory care? If so it may be helpful to remind her of this. It is most likely inevitable that she has to go into memory care eventually, so don’t wait until it creates friction with your spouse and brother.
In the interim you must insist on assistance from your brother no matter how far he may live away from her. One of the stipulations I made in agreeing to have my fairly independent mother in law move in with us at 102 was that we still take vacations twice a year so her siblings would have to help. This gave us a few days from time to time for us.
As for us at nearly I have been investigating life care facilities (CCRCs) with the idea that we would get on a waiting list assuming that the one we will eventually choose (where my wife worked) is so popular the waiting list is somewhere in the vicinity of 5-10 years. I don’t want to have my children to have to go through what we did for my parents. In the meantime I have to work on my wife who is somewhat resistant to the idea.
David, I’m sorry your family endured so much. Your observation about your father’s decline is especially sobering. His dedication clearly came at a great personal cost, and your sister was carrying a considerable responsibility too.
What you say about waiting until your parents could no longer build new relationships gives me something important to consider. I want to respect Mum’s wishes, but I also need to recognize when those wishes and her needs may no longer fit together. Thank you for sharing your experience so honestly.
Really open and personal post. Thanks.
It’s tough. There are no absolute answers. My grief when my father died was tempered by a knowledge that he was sinking beyond the shallows of cognitive decline and already there were the signs of deep depression and very angry mood swings. Thus his death actually freed my mother up to live in her remaining years rather than be a permanent caregiver to an ungrateful recipient, despite how painful it was.
We’ve got a loose plan for her as a family. I do the lifting for now staying with her quite frequently to address loneliness and attend medical appts etc. My brother and his wife have a guest suite that was planned when they extended to accommodate a parent (of either of them). But yep – sometimes memory care is the only solution*. My mother’s friend has rapidly declined this year such that her very dedicated 90 year old husband could no longer cope. Yet his daily visit is fresh heartbreak of her asking why she can’t go home.
*Well personally I’d prefer for myself to be able to make an informed choice about euthanasia while I had capacity and to strictly pre-agreed criteria re pain and anguish.
Thank you for sharing this so openly. I can understand how grief for your father could sit alongside relief that your mother had some freedom again. Caring for someone can take so much out of a person, even when there is love.
Your account of the husband visiting his wife is heartbreaking. Mum’s wish to stay in her apartment weighs on me, but I know her needs may eventually require a different arrangement. As you say, there are no absolute answers. I’m grateful we can keep talking as a family and work through those decisions together.
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