17 Comments
Oct 26Liked by Sue Kusch

Thank you so much for this important and useful article. I will read the whole series. My husband and I have just recently retired (last spring) and his folks are preparing to move into a senior assisted living community soon. We'll be visiting them next week where they currently live several states away. My own mother, who is 81, has not prepared for her elder years, has a very limited fixed income, and has never been able to maintain stable relationships of any kind, whether professional, personal, or just basic neighborliness. Increasingly, her mental and cognitive skills are eroding. For a variety of reasons she is unwilling and/or unable to live with us, although we have made multiple arrangement suggestions. Legally, she has given me power of attorney (legal and medical) and at some point I will probably have to use that, but I would prefer that she made as many decisions for her care as she can. Your article is helping me to plan for what will probably be a very stressful but essential conversation with her soon. I'm waiting for her most recent head injury (from falling out of bed that required 4 staples and a CT scan) to heal first. This article is helping me to organize my research and sort things out before speaking with her. It also gives me a nudge to begin planning more thoroughly for my husband and I. We have wills and have prepared many things but, like you, I believe we both hoped to live out our lives in the rural home we built. I am learning that we must plan for other contingencies.

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Well said, Sue! Thank you. Your point that we see retirement (those of us who can afford to retire, at any rate) as time of freedom to do whatever want without considering that we're aging and our abilities are changing is a really good one. We forget that aging brings challenges we may not be equipped to meet on our own. I always thought I would go home to northwest Wyoming, the home of my heart, to end my years, and then I realized that I had forgotten how important being near good healthcare is to me now, and will be even more so as I continue to age. So I ended up here in northern New Mexico where I have the benefits of rural life (dark skies, trails to walk from my front door) while still being a twenty-minute drive to downtown, plus a great set of choices in care from eastern to western medicine, and small house that could accommodate a live-in caregiver if need be. After caring for my husband through his death from brain cancer and my mom through her death from severe Rheumatoid arthritis in the same year, I know much more than I ever imagined about caregiving failing bodies and surviving the journey!

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author

Your book, Bless the Birds, offered a lot of insight into the realities of caregiving. I am seeking a similar situation: semi-rural with access to a diversity of healthcare options.

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The hardest part, as you know, is finding affordable real estate. Since the pandemic, any place I would want to live in the semi-rural West has gotten expensive. Still, I'm sending good juju your way for you to find a place you can afford that feels right.

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May 6Liked by Sue Kusch

So much important and vital information, as well as things to be aware of. An eye opening experience for me was my father passing away rather quickly from cancer. He passed away at home, which is where we all, I believe, would want to be. But I learned how much of a burden this places on the family and caregivers. Home for Dad was a ranch, 50 miles (1 1/2 hours travel time in good weather, because of country roads) from the nearest major medical facility. Thus, we as his family were far away from medical assistance, and the hospice folks had miles to travel. This adds another level of anxiety and helplessness to an already fraught situation. Basically, we were on our own as we cared for Dad in his final days. We were fortunate there were no acute medical emergencies, other than being there as he slipped away. The whole experience has made me think deeply about considerations of wishing to die at home. Or, where home is as one ages, as you discuss. Huge. Thank you for opening this subject.

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Rural living is wonderful - until a medical crisis happens! I am not happy about leaving my homestead but I know it's the right thing to do. Living into our 70s, 80s & 90s is a modern thing that needs a thoughtful approach including some activism to create better infrastructure to help with incoming mass of older people.

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So true. I would not be happy about leaving my rural home either, but must be considered as we age. I agree that this situation is not addressed as well as it could be, or in as timely a fashion as it could be. The area I lived in for most of my life in Montana is quite rural, and in many cases, old folks would continue living in their isolated homes until a major medical happening forced them and their families to either move them immediately at great expense in funds, time and emotion, or uproot their own lives to provide in home care. Not an easy subject to address, but must be planned for as best we can in our own unique life situations.

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Such an important topic. We all have to face the decisions that come with our own aging.

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May 5Liked by Sue Kusch

thank you for including us on your journey in downsizing and making the tough decisions for realistic living accommodations for elder years. We had to make these decisions during the housing crisis of 2008 before retiring and were fortunate to find a community and home that will see us into our latter years. It doesn't offer everything we wanted, but we're making it work out. Encouraging our children to think about and make plans for these things while they're in their 40s is important to us.

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My 42-year-old son is also thinking long-term. What I learned from my parents' situation is that if you don't have a plan, you lose your autonomy to make decisions. We can't control everything but we help steer our path.

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Such a well done and important post, Sue! Though I think both Joe and Jill Biden are able to see the needs you speak to for our aging population, I have been flummoxed by our country's blind eye to all of the needs people encounter as they age. Aside from zealous marketers, that is! UGH!

I cared for my much-loved parents through most of my 60's. They were in their 80's - 90's and had lived quite healthy lives. I lived 2 hours away. I started visiting 2-3 days a week to help as needed. A year later I was spending at least one overnight visit. All of this was going on while I continued to run my much-loved business. About a year apart, both of my parents took falls that required hospital care and soon after new living arrangements had to be made. My mother rather quickly started to have signs of senior dementia and required a wheelchair. And I became aware that my father's driving habits were not at all good. Mostly he slowed down and tended to hug the curb. UGH! The good news is that one of my sisters made room for my mother to live with her. She and her husband had a house that was accommodating to mom's wheelchair and mom loved being there! My other siblings helped me find a modestly priced seniors-only complex for my father. I was totally prepared for my father to reject this alternative as he had been a carpenter and loved where he lived. To my surprise, he loved his new apartment with its little sun deck and a view of the parking lot and entry area. He was able to bring his much-loved cat and that was a big plus, too. On the downside, I had to figure out how to have dad give-up driving. And soon dad was experiencing senior dementia, too.

Turns out there is so much to learn about aging and caring for our parents. I was clueless. I knew nothing about dementia, and the other medical side of things, financial aspects, the change in family dynamics, and on and on. We were lucky in that there was just enough money to have occasional help and very good health insurance. We were not lucky in that my parents' home and vehicles was being destroyed by looters and kids on drugs. To the point that all utilities had to not only be turned off but also disconnected. And it was hard to find property insurance. The local police had their hands full with quote - 'real crime'. UGH!

I have tried to condense this while at the same time provide a sense of what aging in America is like.

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Oct 26Liked by Sue Kusch

Thank you so much for sharing this, Sandy. It helps me feel a little less confused about what I need to do with my aging mother (and planning for myself and my husband). I didn't grow up with my mom and dad and was moved around at aunts, grandparents, and other extended family's homes. Both my parents, who divorced when I started school, lived their lives pretty much as they pleased. I did reconnect with my mother in my late teens and we've had a pretty decent relationship during my adult years. She was "the fun grandma" to our four kids. Now that both of my parents are in their 80's and have health issues, are on very limited fixed incomes, and are extremely isolated, it appears that their "plan" was to have me care for each of them separately. My mother even set up power of attorney (medical and legal) for me. I'm feeling overwhelmed and burndened and guilty and so many things. It definitely motivates me to make sure our children don't go through this.

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Hi Leenie, Having parents in separate locations can up the ante on caring for them. My first suggestion is to contact hospitals in their areas and ask to speak with whomever provides guidance for senior care. There will be someone at most hospitals doing this and they can be a wealth of information on how to help your parents. They may also have regular classes or meetings for adult caregivers which I would encourage you to attend.

Even when one might not be able to afford much in the way of hired caregivers, you could look into having a regular caregiver visit once a week for a few hours. They can help with such things as taking your parent to a doctor appointment, and taking a shower, or cleaning the kitchen and changing the sheets on the bed, or giving you a report on how your mom or dad are doing. My parents liked each of the caregivers they had. But, if a caregiver is not the right one, no problem, just ask for someone else. You can ask for refences of a good caregiver services at the hospital. Many counties also provide free or low cost visiting nurses when someone is recovering from an illness. So check in with the counties involved, as well as your state. Kamala Harris has talked repeatedly about providing assistance (as in money!) to adult caregivers! As has President Biden. I will be crossing my fingers that that comes thru for you!

It may all look and be hard work and stressful, but I can assure you it is a class we all need to take! I was so clueless about aging before caring for my parents. I came to know them and myself much better by helping them.

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Thank you so much for those tips. I went by my local Committee on Aging office today and arranged to come back for more information. I spoke with two nurses who work through that organization and our local hospice chapter. I also spent some time going through some AARP questionaires that helped me think about (and make lists) for services to look into. I’m adding your suggestions to those lists.

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Sending big hugs Leenie. You can do this. Give it the attention you do to learning about a new plant. Let your parents lead the way by your observation. Love hearing that you have found the path in your community!

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Thank you for sharing your experience, Sandy. I didn't include my own experience with my folks but here is a summary.

In 2018/2019, I witnessed the rapid decline of my elderly parents. In their 80s, they continued to live alone on ⅓ of an acre that they could no longer tend. They both had limited mobility and spent most of their days in reclining chairs. Cooking was done in stages so that my mother could sit down to rest her aching legs. They used a motorized cart to get their mail and to shop. They lived in a small suburb with no public transportation and continued to drive themselves to their medical appointments and shopping.

They spent their days worrying about the weeds in their yard, the fence that needed repair, the many boxes of stuff accrued over a lifetime that needed to be donated, and the drip under the sink that neither of them was physically able to fix. Their income was limited and they didn’t have the money to pay for the work they used to do themselves. They lived in the Sonoran desert and the record-high temperatures kept them confined and worrying about the increase in their electric bill. Both used walkers to move around in the house so the last time I visited, I measured the width of their two bathroom doors - neither would accommodate a wheelchair.

Most of their friends have passed away and they were alone (though together) 99% of the time. The television, shopping trips, and medical appointments were the only contacts they had with the outside world. They had two dogs and a cat and were worried about where they would end up when they died. They didn't complain much but there was a sense of sadness in their voices even when they joked about never planning to live this long.

My attempts to convince them to consider a move into assisted living were mostly ignored. At first, I focused on my concerns about their limitations and safety. Then I tried to sell the benefits of living in a staffed group setting: medical assistance, cooked meals, social interactions, transportation, and relief from demands of land ownership. When I asked them how long they thought they could live on their own, they shrugged their shoulders.

Both continued to tell me that they planned to die in their home. As their daughter who lived 1800 miles away, I experienced despair, concern, and frustration with their lack of a plan. My sister who lived near them was witnessing erratic driving, and significant memory loss and was called several times by my mother to look for our stepdad in a Walmart parking lot because he sometimes fell asleep in the car - 110 degrees outside! They denied any problems with driving and insisted they were fine.

In the fall of 2021, my mother had a series of strokes and eventually returned home to die under hospice care. A month after my mom died, my stepfather fell outside and was unconscious for an unknown length of time until his neighbor found him. Six weeks later, his medical team said he could no longer drive or live on his own. We had no access or finances for a full-time caregiver and he refused to consider assisted living so he moved to the East Coast to live with his daughter. He is miserable there but it was the only option he had.

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Sue, I can imagine how stressful this time was for you. While I am not looking for a culprit, one can easily see in retrospect that all of the issues of aging are nearly totally ignored in this country. At least for anyone with limited funds, which is most of the population. We need more education.

Think about dementia as an example. Where is the formal education about dementia in our society? Who is teaching young people as well as adults about the various ways that the different types of dementia develops and what it is like for the person who has it. We have 100s of thousands of people living on their own in this country who have dementia, and no one is talking about how to interact with them, much less to consider that a person may have dementia, say at the checkout counter or crossing the street, as an examples. I think of the bus driver having to leave a person, that maybe should not be left on his or her own at a bus stop. Dementia is a difficult topic, but ignoring it is not the answer.

I was lucky in that, while both of my parents needed 24/7 in their later years, they mostly were happy and rather easy to care for. This is not true of all people who have dementia. Family members can be oblivious to what is really going on. We were lucky to have some excellent caregivers. Though I could only afford to have them stay with dad for one overnight a week, I really lucked out in finding a good service. Two of these caregivers were wonderful and helped me, as much as they helped my dad! They taught me things like agreeing with him on almost any and everything when he brought up a difficult topic, like buying a new car. This topic always scared me. The caregivers helped me see that he would soon forget about anything we said, if I agreed with him. So, when he brought the topic up, I would ask what type of car he wanted, or what color? Soon we would move on to some other topic. It was like magic! Of course we would repeat this scenario many, many times but at least neither he or I would be left feeling worried or angry. The caregivers also taught me to drop the word 'remember' when talking with either of my parents. On the other hand, I needed to 'remember' that it was not their fault that they could not remember that they were repeating a conversation we had just had a short time earlier or, the name of the lady who lived next door. In a very real way, it helped to think of talking with a toddler who might not be able to remember such things. The caregivers assured me that difficulties between siblings was very common. And also, that caregiving by a family member was often more difficult, than for an outsider. We family members have soooo many buttons to be pushed, leading to hurt feelings and worse. And it is so hard to keep up to speed on how your parents are changing right before your eyes. This is just some of what I had to learn along the way of caring for my parents.

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