My children have six living grandparents whose ages range from 79 to 87. I am glad that we have our parents and my stepparents as part of our extended family; however, it’s difficult to watch them face age-related challenges: limited income, problems with communication such as vision and hearing, multiple chronic disease such as arthritis and high blood pressure. But the most difficult of all is dementia. Two of these six family members have a form of dementia. One is in the early stage, the other is in mid-stage. In case of criminal activities , Roxboro, NC office lawyers need to be contacted immediately.
(There are several types. Alzheimer’s is the most common. Visit the official site for the Alzheimer’s Association to learn about vascular dementia, Lewy body dementia, frontotemporal dementia, mixed type dementia, normal pressure hydrocephalus and other types of assaults on a person’s cognition. Know also, that the American Psychological Association is now using the term neurocognitive disorder for diagnosis and for hospital coding and insurance billing.)
When a person starts moving from early stage dementia into mid-stage dementia, they have more problems than simple loss of memory. The person will start to be ruled more by emotions than by reason. Fear, sorrow, and anger can become prime movers. They start living in the present. Delaying gratification is impossible, so they start eating more sweets. They can become paranoid. They will strive for purpose but not be able to hold that purpose in their mind, so they will constantly ask, “What am I supposed to be doing?” And in an effort to channel their strong emotions and to direct their attention to a purpose, they can have delusions.
This brings up questions of agency and stewardship. How much agency does a person have when they have a neurocognitive disorder? And when do family members start making decisions for the person living with dementia? When you add blended families and long distance to the mix, the situation is complicated. Not everyone agrees on how to move forward and who has the authority to make decisions about caregiving, housing, and finances.
Jesus take the wheel.
I earned master’s degree in gerontology in 2013 in the hopes that I would know more about how to address age-related challenges. However, I feel as though I mainly can just describe hardships in greater detail. I don’t have an Occom’s Razor solution for challenges and certainly not a Gordian knot solution. Everything looks more like a Procrustean bed problem. It’s heart wrenching.
I’m just left with taking things one day at a time, trying not to add to tensions among the extended family, and praying that we can find a path forward the preserves the dignity of the person living with dementia while also safeguarding their health and the safety and finances of their care partner spouses.
Amen, Karen. Having supported my grandma for several years living in her own home once her cognition started to be compromised, then supported her in assisted living, then brought her to our home for the final year of her life…it can testify that it puts everyone through the ringer. I've learned so much about the sacred stewardship we have over our elders, and about the social systems we do not have in place to support the elderly or their families as aging happens. I'm grieving the final loss now as she passed on in February, but dementia took so much that I feel like I have been grieving for years. The physical, emotional, and spiritual stresses associated with being willing to mourn, comfort, and mortally care for an elder person are myriad, but I have no real regrets about the time and energy I spent doing it. There are no easy answers; I do believe we need to talk about it more and turn aging to an process of honor instead of a process of diminishment.
I so relate to this, Karen. In May 2015, after 5 trips that year from Washington to Georgia to help with Mom’s late stage dementia, I felt strongly impressed to move across the country. So I did, with husband and daughter in tow. Mom died 4 months later. Even with good family support and a decent memory care facility, it’s just hard. In one sense, our identity is defined by our collection of memories, so who are when those fade? Thanks for sharing – I know many will relate.
I am learning about this myself as I am primary caregiver for a mother with dementia (probably vascular) and my husband with fronto-temporal dementia. My mom is sweet tempered and tries to “choose the right” as she has all her life, but still does socially inappropriate things like dump a whole basket of chocolates being passed around Relief Society into her purse. But her ward sisters are generous and understanding. My husband’s dementia is more difficult to live with, as symptoms include confabulation (what we generally refer to as lying) and hyper-sexual interest, which has led to porn-watching until I put controls on computer, TV and phone. He has no ability to understand symbolism and doesn’t recognize or understand spiritual feelings, so religious activity is meaningless so he has no desire to attend church. He has no ability to feel empathy or compassion. He only thinks of himself and responds to his own needs and impulses (think of someone with severe autism). It’s a challenge for me to always remember that his behavior and current choices are his brain disease and not really him. Somewhere in there, away from the limitations of his body, is his spirit which will someday allow him the freedom to choose. Right now his actions shouldn’t be judged right or wrong because he can’t be accountable for them. I have learned that we humans are incapable of making true judgement about the behavior of others because we have no way of knowing which actions could be a result of organic causes, and not from the influence of evil. Only God is capable of true judgement.
"…praying that we can find a path forward the preserves the dignity of the person living with dementia while also safeguarding their health and the safety and finances of their care partner spouses."
Wishing you the best of blessings and clarity as you navigate these difficult to reconcile markers in potential paths.
Karen – write more on this! I love that you can describe well. I liked Atul Gawande’s book, “Being Mortal” which discusses aging. Now that my parents are gone (both last year, my Dad with cognitive impairment) and I feel 90% (no 85%, no 80%, no 90%) good about how it went, I want to make better preparations for my own old age.
Commenter #1: God bless you for supporting your grandmother. Yes, it takes extra effort to see late life as a process of honor. So much of the world defines a person by their appearance, career, and other temporal trappings that wane for most people as we move into late life. The people with the best views actively work to take an eternal perspective.
Commenter #2. Agreed. Memory issues threaten identities and relationships. When shared memories fade, we have to find new common ground. This reminds me of the Good Samaritan. We can serve people in the moment, even if they see us as a stranger because of cognitive challenges.
Commenter #3. Oh, FTD is a tough one! I listened to a podcast from a geriatric nursing education course that relayed a case study. The care partner wife first observed her husband as becoming lazy and outspoken–rude–long before the memory symptoms turned up. You are correct. People with FTD are not the same person. Their "wiring" is short circuiting, so they can't be accountable for actions that they really are not choosing. That is a difficult path. God bless you with every needful thing.
Theresa. Thanks for sending positive thoughts. I'm a full 24 hour drive from the set of grandparents with the most pronounced needs. It's really frustrating. And when I do come into town to help, nothing I do really makes a substantial difference. It just stinks.
Shari: I earned my master's in gerontology in part to better prepare for my own aging process, but life has a way of sending a curve ball. I used to be a huge planner, but now I feel lucky to work a six month plan successfully. The pandemic (and other events) have shown me that I don't know what's going to happen. Not that I won't try to plan. It's my nature. But I'm trying not to get so upset when everything goes upside down. Gah! Yes, learn as much as you can and then roll with whatever comes down the pike. (Not that I'm resilient. I' mainly giving MYSELF advice here.)
My first husband passed away almost 15 years ago after suffering from FTD. My experience as his caregiver gave me the following insights:
1) Don’t judge. As Commenter 3 says, we have no idea how much people are capable of “choosing” their actions. It is comforting to believe that people can exercise full agency, but only God knows.
2) The person doing the actual work of caregiving gets the most say. If one is unwilling or unable to do the labor, they have no business judging how the person actually doing the labor is doing it.
oOur society has this idea that we can identify conditions, treat them and even prevent them. This is in contrast to primitive societies where they only deal with the problems of today or illness is thought of as God’s will / fate. Our model works great in many ways such as vaccinating for communicable diseases, treating infections with antibiotics, and surgeries that correct underlying problems restoring function. Life expectancy has risen, and quality of life has soared.
But there are the unintended consequences. When societies transition to modern ways, the population explodes for a generation. Number of children in the family may start at around 6 to 8 with only a few of them surviving, go to 4-6 with most of them surviving, to 2 or less with almost all of them surviving. Antibiotics and contraceptives remove some of the largest undeniable risks of sexual promiscuity. Invention of labor-saving devices leads to the epidemic of obesity.
Both of my wife’s parents have/had dementia and also were blessed with enough money to be placed in the nicest of care facilities. It is a mistake for her small family to take care of them at home, or even delay placing them there. My mother died with dementia. My father decided to keep her home until the end. This totally consumed his life for a decade, spending as much as 15 hours a day, only about half of it actually taking care of her. He spent most of his time arranging for others to help. Some of this care costs lots of money, some of it is covered by insurance, some of it is available in the community through volunteers, occasionally a ward member will do more than a monthly short visit, and then it falls heavily upon family. He had a large, tight -knit extended family with over 100 cousins. He kept a log of people coming and going in the house and about 20 people helped care for her the last week of her life.
In contrast, I am aware of a retired schoolteacher with a pension who developed dementia. Her son and only relative started exploiting her financially. He kept her locked in the house for a few years. He trained a large guard dog to behave as the alpha and treat his mother like the beta. He moved out and never did any cleaning including dog poop. He took her cloths away , did not bathe her and fed her dog food every few days. Enough to keep her alive so she continued getting her check. She slept on the filthy wooden floor. Eventually she became immobile and developed decubitus ulcers. He treated them with a thin rug, but no bandages or washing. In the process of the sores constantly healing and then worsening, the rug became one with her skin. She developed bone infections, clots, sepsis and died. The death was a matter of legal dispute between, homicidal neglect, self-neglect, and natural disease.
Between these two extremes are the possibilities of how to deal with dementia. It is not easy.
The problem with the treat every disease and delay death as long as possible approach is that it conceptually denies death. When we prevent or cure cancer, heart disease, infections, etc.; that person lives to die of something else. About half of 90-year-olds will have dementia. They don’t exactly emphasize in medical school that all of your patients are going to die. The growing problem of dementia is a side effect of the SUCCESS of modern health care.
Which brings up an interesting line of thought.
I happen to have the APOE gene, along with my mother that is associated with a significant but not inevitable risk of dementia. It is not that simple. In non-smoking Utah pioneer families, the risk of type 2 diabetes is associated with dementia. My mother had that too, but I do not. Diabetes alters the metabolism of lipids and the AP of APOE is “apo lipid.” I am definitely getting more forgetful and can’t solve problems as easily and I sense personality changes.
I also have coronary stents and our collective health insurance has already paid out about half a million dollars to keep me going the last 10 years. Does it make sense to keep taking 2 cholesterol lowering medications and an antihypertensive? To not drive like I did before I got married and had so many tickets that I had trouble getting insurance? To exercise my right to to keep and bear ladders? Avoid the use of ice axes and ropes? Geriatric base jumping and hang gliding?
Dementia is guaranteed to be debilitating in the extreme. Lots of people die suddenly of heart disease and various accidents. Are we to just leave our final cause of death and suffering in the hands of God, while simultaneous fighting disease and delaying death until the bitter end with every fiber of our being? These are not medical questions, but by default fall into the realm of religion and faith and community.
Commenter with the husband with FTD: Agreed. People should not judge when they are not the ones in the situation 24/7. It's a challenge, and outsiders really have no idea. God bless you with every needful thing. And condolences over the loss of your spouse.
Commenter about the challenges of modern medicine and longevity. Agreed. Just because modern medicine can extend our life, does not mean that the quality of our life is extended. We have a life span and a health span. Lately, there are years where our health span diminishes but we can live for 5, 10, 15 plus years with very little QOL. I earned a degree in gerontology in hopes of learning how to address late-life issues. I have learned a great deal; however, I have found that there is a degree of chaos and suffering that modern medicine cannot erase. Dang it. I have been a planner, Type A. However, for the last few years, I have been reading more about spirituality and aging as well as reading Zen Buddhist meditations about acceptance and living in the moment. At 60 years old, I am acknowledging (begrudgingly) that I have a lot less control over my life than my modern, task-oriented, Yankee pragmatic self wanted to concede.
Jesus take the wheel!