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| Dad meeting his youngest granddaughter |
Caregiving is a topic that concerns most of us. We usually don't look forward to the obligations and responsibilities of taking care of someone else, but we know that is likely to happen. Either a parent, spouse, partner, relative, or friend is going to need our help at some point. Just as possible, we are going to be the recipient of caregiving from someone else.
This topic was raised several times in the recent post, Where does this retirement blog go from here? As one in a series of responses to your interest, today I will focus on what the caregiving experience was like for me and my wife, Betty, after my mom died and we were responsible for my dad's situation.
Up front comes an important disclaimer. My parents lived in a CCRC, or Continuing Care Retirement Community. That meant they had a full range of services, from prepared meals, to home nursing care, and full nursing center services if needed. Betty and I were not tasked with the daily feeding, cleaning, and monitoring of dad's condition. I am quite aware that our experience in caregiving was much less stressful than it might have been if dad couldn't afford such a level of care.
Mom died in December, 2010. At that point my parents had been married for 63 years. The only time they weren't together was when dad went on business trips. He was completely devoted to mom, so much so, that sometimes it was hard to tell where her personality stopped and his began. We fully expected dad to die not long after mom. He was so connected to her that life as a single was almost impossible to imagine.
Well, surprise, surprise. Dad spent over four years on his own, seemingly happy and not outwardly depressed over mom's death. While he was one of the least social people you might ever meet, he had an acquaintance or two, dined with those people every day and read at least a book a week. Because mom loved to watch the Phoenix Suns, he continued to do so for a few years, finally giving that habit up two years before his death. He did watch the evening news on a TV that had more more green than other colors, but refused the offer of an upgrade to a newer set several times. He wasn't a music listener or movie watcher, so how he filled his days is still a bit of a mystery.
Betty and I had a few duties as his caregiver that became increasingly important each year after mom's death. He really looked forward to our weekly lunches together. Though he rarely talked, he was genuinely pleased we were sitting at the table with him. Every once in a while he'd agree to leave the property for lunch at a restaurant, but he didn't like leaving his comfort zone very often, so we stopped suggesting it.
As his memory declined, I took over his financial and tax matters. For a time he wanted to know what I was doing. Eventually, he stopped asking, trusting me to protect his interests. That was an important part of our taking care of him. Mom had been the bill payer, dad wasn't comfortable with all of that.
Three years before his death we convinced him to give up the car. He had no need for one. He was starting to get lost driving to and from our house and his. I convinced him that he was putting his financial future at risk if he caused an accident. Plus, his granddaughter needed a car. By giving it to her he felt good that he could help her out.
Of course, that meant Betty or I would have to take him to all doctor appointments and to the grocery and drug stores for his pills and food supplies. That wasn't a major inconvenience, though it did require some serious planning when we had a month or two RV vacation scheduled. But, the tradeoff of him not driving was worth it.
Dad was seemingly healthy on the morning of March 7,2015. He had breakfast and lunch at his usual table. By dinner time he was gone, found on the floor of his room. Medical folks assured me his passing was quick and probably painless.
Caregiving shifted to funeral arrangements and cleaning out his apartment. It was hard to walk into his place and look at the chair where he spent most days, reading. But, Betty and I consoled ourselves with the conviction that he led a good life, was loved by many, had excellent care, and did not have to deal with a lingering decline before joining his forever wife.
What about you? What caregiving story can you share to help us all deal with what is likely to be part of our future?
Caregiving is not an issue yet but it may be on the horizon. My dad passed at the age of 54 in a day due to rupture of his aorta. Mom is turning 76 later in the year. She is in good shape and well able to take care of herself and her home as of now. She has a cleaning lady every two weeks. However, my sister and I are gradually seeing signs of aging in her. I do not know whether we will hire a caregiver or take her in but sending her to a facility is out of the question and out of our culture. We do not have nice assisted living facilities like you guys have and the existing facilities are really not the kind of places one wants to be at. There are only a handful of very good ones but getting placed in them is next to impossible and they are very expensive. Mom is hoping and praying that she should never need care.
ReplyDeleteI looked at your profile and see you live in Istanbul. I appreciate your comments since I have no idea what elder care options are like in Turkey. Having poor or overpriced nursing care facilities does make it more difficult and limits your choices. I wish you and your mom the best.
DeleteThanks for your description of caregiving! This is what I'm doing now actually but it's for my SIL. She is in a Retirement Community also, but I still do all the same things you did for your dad. I've wondered if it was truly "caregiving"... it felt like it was but then I looked at folks who had individuals living with them 24/7 requiring a lot more care and wondered if what I did was really caregiving. Thanks for helping me realize it is. And to be grateful I have the ability to do it and she can be in the facility she is in, which offers a lot of support (as you've noted).
ReplyDeleteWhat you are doing is caregiving. There are different levels of need but any of it qualifies as caring for another person. If mom and dad had not been able to afford the type of facility they had, we would have taken them in or arranged for full time care. They were lucky to spent their last several years in relative comfort and in good hands. But, I know they benefited from the type of caregiving we provided.
DeleteMy mother-in-law died in 1988, she was 69. They didn't get her to Mass General soon enough from the local hospital she was in. It was truly a crying shame. We didn't expect dad to handle everything on his own for long. We were very wrong. He actually found a woman friend and dated her for a few years, even traveled to England with her. In 2000 we convinced him to move to Philly and be near us. He had kept up the house in Mass. all that time but, not all that well. I maneuvered behind his back with a realtor who kept us posted on how things were going. One hilarious thing was the garage. It was a one car garage and the walls were lined floor to ceiling with cardboard boxes. We never knew what was in them and hesitated to ask. Turned out, they were all empty! When they unpacked decades before they kept the boxes 'just in case'! We still laugh about that!
ReplyDeleteHe sold the house and moved into an apartment building a block away from us in Philly. As we became a bit more concerned about his being alone, (he had set off the smoke detectors more than once), we decided to buy a duplex and let him have the 2nd unit. It worked for several years with a few close calls. He set a trivet on fire under a pan on the stove and we knew then we couldn't leave him alone. We got him into an assisted living high rise asap. He had his own apt. with no help for about 6 months. After that we had to get an aide for half days, then it was 24hrs. and within a year he was in full assisted living. All within the same building. He lasted 3 years in that place and the last few months were not pretty. He died at 93 in 2016.
He lived quite a life but, the last few years were rough on all of us. I hope I get hit by a train!
b
Assuming there is a God and I get to meet him, there will be some serious discussions about how too many of us end our time on earth. My dad was one of the lucky ones: healthy to gone in six hours. I hope for the same end. Mom's last few years were miserable for her, even with the best care available and constant visits from us.
DeleteI pick being hit on the head by a meteor. Thanks, Barbara for your story.
Hi Bob! I think it is important for all of us to start opening up the discussion about what comes when care is needed at the end. We will all be there whether we are providing the care of having it given to us. I learned a lot when my parent passed on and even wrote a blog post about it. One of the best things about being a writer is it gives us all a chance to write about things that we need to process. Whether we write about it, or talk it over with those close to us, I too believe it is very important. ~Kathy P.S. In case it is okay, here is a link to the post I wrote following my father's passing...please delete if inappropriate.... https://www.smartliving365.com/five-lessons-i-learned-from-dad-and-other-thoughts-about-fathers-day/
ReplyDeleteI just finished an excellent book sent for my review: The Gifts of Caregiving by Connie Goldman. This revised version of an earlier book is moving, powerful, and important for any caregiver to read. I recommend it to anyone who is in such a situation.
DeleteWhen my father passed away in 1993 at age 72 we moved my mother into a CCRC which was basically a good apartment complex with security, some medical care onsite, and various levels of assistance that you might need. My mother was in the lowest level of care required (apt + some meals) for the next 19 years. She only was in a more advanced care situation for about a month before she passed at age 90. She was very good in that regard since we took turns showing up to help where we could (no one lived in the town she was in anymore). I also took over all financial chores for her outside her normal checkwriting and bill paying; essentially her investments, taxes, and so on. All in all she was a wonderful example of what many of us hope to be as far as a low burden on any of our children.
ReplyDeleteThanks, Chuck, for your story. My parents were very dedicated to the idea that they would not put extra burdens on their sons toward the end of their lives. They succeeded. Your mom took the same path.
DeleteBetty and I are committed to the same end result. Our kids would do anything and everything for us. But, we have the resources so they don't have to. I know the majority don't have that option, and that is sad.
Could not agree more about not being a burden, Bob. With any luck I can be the opposite from a monetary standpoint, as you also wish, and leave our daughter a nice sum. But man makes plans while God laughs, so we'll see. Continued best wishes.
DeleteI was relatively young when my parents died -- 30 when my dad died, 46 when mom died. My dad died instantly from a heart attack, so there was no issue of care. Mom died of cancer, but only a few months past diagnosis, so again, there wasn't the prolonged care that some people go through with their parents.
ReplyDeleteMy role in caring for mom in her final months was mostly caring for my sister. I lived far away and it fell on my sister's shoulders to take care of a lot of the day to day needs. So I figured that my job was to give my sister as much support as I possibly could from a distance. I took care of whatever I could handle by phone. When a decision needed to be made, I told my sister to do whatever made it easier for her and I would support that plan. I called frequently to check in on her and to let her know that I acknowledged and appreciated what she was doing. I flew back every few weeks to do what I could.
I don't know how much help that actually was, and certainly did not compare to what she was doing, but it was the best I could do. I think we all hold ourselves up to some sort of perfect standards when for the most part, I think we are all doing the best we can.
You have identified an important part of the caregiving equation: what can long distance relatives do? My two brothers live far away from Phoenix, so they weren't able to do much of the stuff for our parents. But, both sons visited when they could, made regular phone calls, and supported Betty and me in our decision making. You did the same for your sister. Caring for the caregiver is every bit as important.
DeleteWe had lived downstairs from my in-laws for the last 11 years. Two years ago my MIL turned 90 and celebrated her 70th wedding anniversary. Within two weeks, my FIL had passed away unexpectedly, she contracted shingles and never got over losing him. We tried caring for her at home but she became so ill had to go to hospital and from there to an aged care home. This was the best thing that happened to her. She recovered and became so involved in all the activities that at almost 92 she has a new lease on life. We visit regularly and I volunteer at her aged care home. My parents died when they were 63 and 66 both from cancer. I cared for Mum who actually outlived Dad (she had cancer for 10 years, he only lived 6 months). It can be difficult being a carer and also the feeling of guilt can be strong if you have to move them into a care facility. My MIL has proven though that this can be a very positive experience.
ReplyDeleteSue from Sizzling Towards 60 & Beyond
Good to hear a happy turnaround story, Sue. Your MIL sounds like like an amazing lady and an inspiration.
DeleteYes, moving someone into a care facility can be hard to accept. You always hope you can avoid that step, but sometimes it is best for them.
My Dad passed when I was in my 30’s, but my Mom was healthy and completely able to handle his care. My Mom passed in her late 80’s but was only incapacitated for the last month of her life and both my brother and I were ready, willing and able to pitch in. So, until that point, my caregiving had been limited. My challenge came in the form of my Aunt Helen, a feisty and fiercely independent woman who had raised her only child alone (back in the day when not many couples were divorced). Since her son pre-deceased her, my cousins and I looked out for Aunt Helen to the extent she would allow, but we could see legal issues coming up down the road if she became incapacitated. She did have her attorney draw up a will, but she refused to grant anyone (including her attorney) Power of Attorney. As it became apparent that she was no longer taking good care of herself, we tried to convince her to move to an assisted living home on more than one occasion. No dice. We received the same response to our requests to grant someone Power of Attorney so that we could be sure her bills were being paid. Finally, one day the neighbors saw Aunt Helen wandering around the neighborhood and they called the Department of Social Services. That was the best thing that could have happened as she then had a caseworker assigned to check up on her. When it became obvious to the caseworker that Aunt Helen’s dementia was advancing and it would be in her best interests to move to an assisted living facility, the caseworker took the lead in asking the court to appoint my cousin Joyce and I as co-guardians of our aunt who was just entering her 90’s. At about the same time this was happening, Aunt Helen was admitted to a hospital and the medical staff determined that she could no longer live alone in her home. She was subsequently transferred to an assisted living home and then, when her medical needs became more acute, on to a health care facility. The good news is that Joyce and I easily split the responsibilities of caring for Aunt Helen as co-guardians. I could never, ever work in the medical field, but Joyce worked with disabled adults so she took care of Aunt Helen’s personal needs, making sure she had all the clothing and personal items she needed, taking her out for rides and following up with the staff at the health care facility. Due to my business background, I picked up the financial end of things, making sure that all of our aunt’s bills were paid, clearing the path to selling the house if we needed to in order to finance her care and filing mountains of paperwork required by the court for the guardianship. Aunt Helen passed more than a year after she moved to the health care facility at which time the guardianship legally ceased and I took over as executrix. Here are a couple of thoughts on this situation . . . First of all, we were all fortunate because the cousins all got along and worked well together, Joyce and I both handled our responsibilities conscientiously and no one in the family was out to steal Aunt Helen’s money. There are many families where this would not have been the case and Aunt Helen’s best interests might have been the least of all priorities. Second, I can’t stress enough the importance of having a will, a Power of Attorney and health care directives in place to ensure that (1) your personal business and your health care are administered as you so choose and not how the court decides and (2) your family does not have to jump through the legal hoops we did in order to take care of our aunt and manage her personal business. Even if we were immediate family members (Aunt Helen had none), the lack of Power of Attorney would have prevented us from managing her care and her finances. It was an awful (but enlightening) experience.
ReplyDeleteMy apologies for the lengthy comment, Bob. This was certainly a complicated situation that, unfortunately, could have been easily avoided had the proper legal documents been in place.
I appreciate your detailed account because it makes the point so well that each of us has the responsibility to take legal steps ahead of time to protect ourselves and our family. As your story makes clear, having wills, powers of attorney, and health directives in place before they are needed is very important. Allowing a court to decide the fate of a parent, relative, or even ourselves should not happen.
DeleteBetty and I had ours drawn up 15 years ago, then recently updated them to reflect changes in the family, addresses, etc. Both girls know where the originals are and both girls have copies.
In your case it finally resolved itself but not before a lot of heartache.
My mother is 85 yrs old, still living in her rural home 13 mi from the nearest town. She experiences diminished sight (cataract surgery booked next month), hearing, fine and gross motor mobility. She always was a poor driver and the aging process hasn't helped that situation any. I took her to town most times this past winter but now it's spring, she thinks she should drive herself. It's time for the hard conversation about surrendering her license. Once a fastidious housekeeper, I see the decline in her home. Her cooking skills have diminished and I take her food each week. Making arrangements for home repairs is beyond her capacity anymore. I'm currently making arrangements for some home repairs on her behalf. I recently took her for a medical appointment in a city 2 hrs away. She was quite befuddled in the unfamiliar territory even with my company. All of this is not the hard part. It's the conflict. She has a sharp tongue and she uses it on the people closest to her. The relationship is characterized by attack and resistance on her part. I'm damned if I do and damned if I don't. She was never one to make proactive decisions. She could still make some of these decisions if she only would but if she doesn't, it's time to act on her behalf. I will fulfill my filial obligations but I know it won't be pretty.
ReplyDeleteAe we age, we have the tendency to get set in our ways. Nowhere is that more evident than in our own care. Your mom is a good example. Unfortunately, you have found the only answer I know of: be proactive and do what must be done and accept the consequences.
DeleteThanks, Mona.
Hubby and I are childfree by choice and even though we have many close relatives we chose to have the courts appoint a guardian if/when one of us is left alone rather then burden our relatives. I don't see a problem with letting professional social workers take care of the work rather then forcing the work onto a relative. As Mary said, it is a lot of work. A sister an I shared the job for the 10 years my mother was in a nursing home and I will not force a relative to go through that.
DeleteBoth my parents had difficult final illnesses that necessitated nursing home care. In my father's case, he made the choice to go to a nursing home when he realized that my mother could not manage his care at home. My pragmatic mother knew that she had no choice when a brain tumor left her partially paralyzed and in need of two aides and a mechanical lift just to get from bed to chair. In both cases, my role was to provide both practical and emotional support. I became very aware how important it is for a patient in a long-term care facility to have an advocate. My single women friends and I try to provide this practical help, emotional support and advocacy for one another. For the past several years, I have been the primary medical support person for a friend with serious health issues -- going with her to all medical appointments, dropping everything to meet her at the ER after a fall, helping her to choose a rehab facility, making the arrangements to set up a bed in her living room so that she could come home, etc. I'm operating on the principle that what goes around comes around and that if I do this for others, someone will also do it for me. -Jean
ReplyDeleteBeing a caregiver should result in a situation where others will do the same for you. That isn't always the case, but when it happens our basic humanity shines through.
DeleteThese comments have opened my eyes to something that wasn't in the forefront of my thinking before but cries out for a follow up post: the last period of almost all of our lives is not a particularly joyful period. The litany of illnesses, sickness, and loss of basic functions is just the way it is. So, how do we approach it? How do we maintain our humanity, our attitude, and our relationships with others when the end of life appears to be a gauntlet of pain and misery?
I am in the midst of reading two excellent books that give me some answers. They present a reassuring picture of goodness and strength in the face of unrelenting problems and limitations.
I am excited to share those thoughts with you.
I retired early five year ago to take care of my parents, now 87 and 82. Both have major health issues. My mother has not driven in years and my father can only drive locally and I am not sure for how much longer. I take them to all their doctor appointments, provide wound care for my father on a daily basis. My mother is a hoarder and we have constant battles over my cleaning her house. Even after my father's fall she refused to let me clean out the hall. I have resorted to getting rid of things when she is in the hospital and hope she doesn't notice. A nursing home or assisted living facility is out of the question as none of us has sufficient funds for such an expense. My paternal grandmother lived to 98 so I don't see this ending any time soon.
ReplyDeleteThere is Medicaid available for people who can't afford nursing home bills and some assisted living facilities will accept it. Of course one has to be truly unable to pay to qualify. Just a thought.
DeleteMy mom, who is fiercely independent at 84, lives in a small northern Canadian town. My dad passed away 14 years ago, and since then mom has lived alone. A couple of years ago after a hard winter, she sold the family house and moved into a ground level condo downtown. Her health, which has been poor for a number of years, recently has taken a turn for the worse. One of my brothers who lives in the same community retired last year, and he has taken on the primary responsibility for caregiving. Another brother in the area and his wife also provide a lot of support. I am very grateful to my siblings for all they do. I don’t live nearby, and it is hard to do much from afar.
ReplyDeleteI think one of the hard things for my brother who does the caregiving is that my mom won’t say what she needs assistance with and often refuses help. So he has to guess what she needs and provide that help without it appearing to be caregiving. When she gets sick, she does not phone for help, and she won’t use her lifeline either (and she has fallen a number of times). Somebody has to drop in at least daily to check on her. It makes it hard for my brother to travel or have much of a life of his own. I understand the desire to be independent, but I think many elderly people don’t realize how much harder the lack of acceptance and communication about what they need makes it for family members who are providing the care.
Jude
Your mom's situation and attitude are good arguments for the need to discuss situations ahead of time so the person receiving the care understand he or she has responsibilities, too. The burden on family members will always be there, but having a more cooperative "patient" makes it more workable.
DeleteYou mom may really be ready (even if she doesn't agree) for some form of assisted living or in-home care. Your brother can only do so much.