Caregiving and its effect on a family generated some excellent comments and areas of discussion. This subject is one that causes anxiety or some trepidation in all of us. There was a general agreement that planning and cooperation among all parties are essential. Unfortunately, it was also clear that sometimes the person requiring the care does not make this an easy situation.
One regular reader, Rick, (I love alliteration) wondered if I would ask for your thoughts on a particularly vexing circumstance involving caregiving. One of his comments included this plea for feedback:
"The challenges and plans for those who are single, widowed, divorced, and/or childless and those with minimal, absent, or unwilling families to turn to."
Caregiving when the patient is agreeable and there is an available support system of family or friends is tough enough.
Caregiving when the person needing help is alone multiplies the complications enormously. Without a willing partner, nearby family or friends available to do what must be done, living in an isolated situation places the individual in need of help in quite a bind. Medical complications, depression, and a decrease in function and mobility place that person at real risk.
I did find some websites on the Internet that I will share now. But, I bet Rick, and others in similar situations now or in the future, are looking forward to your stories, ideas, and support.
Resources for those who find themselves on their own:
* An excellent article on being an "Elder Orphan" is available here. Scroll down just a bit to get to the section that might help.
* Long Distance Caregiving has suggestions and ideas for making this a viable option, at least for a time.
* Maybe better communication about the situations with siblings will improve the availability of care.
* Childless Elders navigating their future requires real preparation. This article deals with a particular informational event, but there is plenty of general information to make it worth reading.
OK, now your turn. What ideas, approaches, or warm hugs can you offer to those of us facing a future without obvious support.
I don't have any personal experience with this difficult situation, but I'm wondering if a conversation with a Primary Care Physician might be helpful. I'm guessing that doctors, especially those in well-established family or geriatric care practices, have a number of patients in the same situation. A PCP may be able to offer advice based on other patients' experiences and may even know of specific resources in the local area that may prove useful. Best wishes, Rick. I hope your inquiry generates some helpful possibilities.ReplyDelete
Good suggestion, Mary. Being alone and needing some help with basic daily needs is a situation that a good medical practice expeiences frequently.Delete
It is likely they know of local agencies and resources.
Being in a rural area will make this more complicated. But, I would think a regional hospital would know of places to turn also since a portion of their patient base fits this description.
I think that being in a rural area may actually be of some benefit. The overwhelming community needs of an urban area have people being just lost in the big shuffle and it seems like people/neighbors watch out for each other more in smaller communities. Especially I think a good place to start or just get information is with your county social services. There are social workers that specialize in elder services or care available even if financially you may not qualify they are aware of availability and supports. (In cities social services are completely overwhelmed). JreDelete
I observed this very thing in November 2020. My 51yo cousin was diagnosed with cancer that had already spread to brain and liver. Her sisters came "to visit" for a few days. Cousin lives in same town as my oldest sister so that's where she leaned. My sister ended up taking her into her own home through all the treatment when she wasn't hospitalized. When cousin finally accepted she was terminal and going on hospice, her BFF flew across the country. She and my sister took cousin to her own home and 48h later she died.ReplyDelete
Does everyone have someone who will do that for them? Who knows. Cousin leaned hard. It was really tough as my sister felt like she didn't really have a choice. And the sisters never thanked her once and then told people that had she done a better "job", their sister wouldn't have died. It was awful.
I share all of the detail because those you think you can count on may very well walk away with the inability to handle it. Denial is a powerful driver at the steering wheel. If I don't believe it, it won't happen. You're gonna be fine, see ya next year.
In-home hospice care is very hard to get and has been for at least 4y now. Caregivers are retiring in droves and/or taking other jobs. Having provided Mom's hospice care for 7w along w sisters, it is both the hardest thing I've ever done and the most rewarding. Mom was so grateful and thanked us every single night when we got her settled in bed for the night. Only the final 36h was she nonverbal.
We've $ planned for the worst and we hope for the best (a few decades from now though please). When I ponder end-of-life.....I always think of Scott Nearing who made the decision to stop eating/drinking and in 21 days he died. Another blogger I follow had the same experience with her husband last year.
That story is sad and disturbing but more common than we would like to admit.Delete
I understand the tremendous burden someone can feel in putting their own life on hold. One hopes they consider their future may look just the same.
The shortage of professional caregivers is a very serious problem. At some point there will be an awareness that these folks need both better wages and working conditions, along with the respect they deserve.
I cannot vouch for how helpful she is, but the first person I ever heard of addressing this (and I noticed, because I am childless, younger than my spouse, far from family, and a lifelong hermit/loner) was Carol Marak. She has written a book ("SOLO AND SMART: The Roadmap for a Supportive and Secure Future") and has a website (carolmarak.com).ReplyDelete
A local elder attorney practice has noticed a need, and has social workers and a nurse on staff. They've started a program called "Aging Ally" that I intend to look into when I can afford an attorney.
I have a daydream about how my solo future as an elder will be, but I also know that I need to plan as well as I can for what happens if that daydream doesn't come true.
I just checked out the book you mention...it looks tremendous. Thank you for bringing it to our attention. I will have to get a copy.Delete
The attorney's awareness is also a helpful sign. As the
Boomer generation continues to age and finds this an area of concern and opportunity, I hope being solo and alone will be met with all sorts of support and care options.
Great topic. My youngest sister has expressed concern about who will take care of her if she ever needs someone. She is single and never had children. She has a few friends, but not sure if she has a friend that would be a caregiver if needed. My wife and I would help if needed, but are 3 hours away. Our middle sister is close but has to work and would have a hard time being any type of caregiver. Her concern is valid and is something she is going to have to try to plan out. I'm sure this is a difficult topic for a lot of people with no easy solution.ReplyDelete
Your youngest sister is the type of person I was thinking of when I wrote this post. Being single and without family or relatives close by is more common than we may think. Your willingness to help is probably a great comfort to her, but 3 hours away is a problem.Delete
There are no easy answers but thinking about options before the time comes is essential.
Since your last article when this came up, I have been seriously brainstorming about my good friend’s situation. Fiercely independent 67 widow in a town 2 hours from a niece who may be able to help in the future. Otherwise, no close family. Fortunately, going into this age with a good amount of money.ReplyDelete
My mother just passed away and I did a load of watching(and calling) from afar.
What I learned? Gathering a group of young professionals who have local mentors is key. They have to have 30 years left- so she will outlive their career. Mom had doctors, bankers, lawyers, CPAs, even hairdressers retire five years before she passed. Granted Mom had the five of us found replacements. Loads of begging.
She is in the process of building a single level, energy efficient house with a “care giver suite”. For certain reasons, she is choosing to eliminate a CCC. Her reasons are good, so I don’t bring it up.
She will have to get to the point of trust to let someone in on her care eventually. Those extra ears… but I think in the age of FaceTime - that will become easier. We have also discussed robots. Family history says she will be fine for 25 more years health wise.
I have already "retired" three Primary Care doctors. My new plan is to select physicans who are at least 20 youngers than me. I am getting too old to train new ones over and over.Delete
I have always planned on a CCC situation for a variety of reasons. But if it ever appeared workable while protecting my kids, I would give serious consideration to a group of full time professionals to be my "team" and complete my life in my home under my timeline. professionsls yo manage my last few years under my wishes.
Thanks to all for the great suggestions. I am transferring my primary care to a "Senior Wellness Clinic." They have social workers and other support personnel on staff so it seems a good place to start.ReplyDelete
Rick in Oregon
Excellent, Rick. I am so happy you found this information useful and it helped you decide on a direction for your care.Delete
Hard issues to think about. I have no siblings, Ken’s brothers lives very far away. Our grown son is ill,himself, now, and that’s rather sobering, as we had thought maybe he would help a little as we age. I try not to contemplate the future too much these days.. my worst fear for myself is what to do if something happens to Ken AND Andrew. Ugh. I know about Friendship Village. A great option. Could sell the house,etc. and move, (both of us or just me.. ) however,I hear they have at least a TWO YEAR waiting list?? We have discussed how we can turn Ken’s home office into a large live in suite for a caregiver, maybe a nursing student,etc. to help us out..I’d like to age at home. Who knows? So many variables, and when we had them all thought out and “planned for” an unexpected event (our son’s situation) reared its head. HE is living with US! We are ok right now. I suppose if we decided on a CCC down the road, such as Fr. VIllage we could just get on the wait list and manage at home till an opening came up.. ?? I am strengthening my ties at my church.I know they have resources. I know Hospice of the Valley is incredible. Much to ponder.ReplyDelete
Much to ponder, yes. Our timetable for a move to Friendship Village is 3-4 years. We will go there sometime in the next few months and see what the waiting list looks like, put down a deposit, and cross our fingers.Delete
The idea of using Ken's office as a caregiver's suite is excellent. There is a separate, private entrance which is pretty much essential.
This is my situation and an issue to which I have devoted considerable thought and planning. I think it is incumbent on those who are aging alone not to be in denial; planning ahead is critical. So here are some thoughts in no particular order: (1) Develop friendship networks, particularly a broad base of friends that you can develop reciprocal caring arrangements with. I find it easier to ask several friends for small amounts of help than to ask one person to basically give up their own life to take care of me. When a friend of mine who was alone was dying of cancer, she hired a lot of in-home care (expensive), but her friends also created an on-line sign-up tool so that she would have some company every day. (2) Make plans for moving to a place where you will not be isolated and where more care will be available (e.g., a CCC). It is always easier to make these arrangements when you are feeling well. A good rule of thumb for various kinds of care communities is that you should move in before you think you need it. (3) Look for formalized self-help communities of elders in your area. I have been particularly interested in the Village model (https://vtvnetwork.clubexpress.com/), in which people volunteer their time to help others when they can and benefit from volunteer help when they need it. The Transition Network (https://ttnwomen.org/), which is focused on women and has chapters in a few large cities, has a program called "The Caring Collaborative," where members sign up to provide care for one another in times of need. These formal programs usually combine the caretaking aspects with programs that will attract younger members who do not yet feel the need for care breathing down their necks.ReplyDelete