The Washington Post just came out with an article called "Promise me you'll never put me in a nursing home," which talks about the difficulty of making such a promise to our loved ones with dementia, because the reality is that many of us cannot keep that promise. It brings up how many people cannot for a variety of reasons- work, kids, nursing care that we are unable to provide on our own, cost, burnout, depression, etc…
The article states: “To Bill Thomas, a geriatrician who is working to change American attitudes about old age, the promise is a red herring. “It’s actually the only thing we know how to do because we don’t have the actual language to say what we’re really asking: ‘Promise me you’ll protect my dignity, promise you’ll protect my privacy, promise to make sure I don’t live in pain.’”
Since my mom lived at home with Lewy Body Dementia for ten years, until the day she died, I know very well what it is like to actually be able to keep someone with dementia living at home. My dad promised my mom he would not put her in a care community (nursing home,) and he was able to keep that promise. However, I too promised to live with and care for my mom all througout her illness and I could not keep that promise. This experience led me to talk to my husband and son about what kind of care I do want. I do want to stay home with them, but every person is different and their life situation is different and what they can handle is different, so what I have asked them for is to "promise that I am cared for with dignity and respect and that my care is done in a way that does not severely negatively effect your life."
We lived with my parents for 2.5 years to help take care of my Mom and I thought we could stay there all throughout her illness, but each one of us in our family had a different level of ability to deal with daily care. My dad is a doctor who is unphased by anything. Therefore, diaper changes, washing, bed sores, using the Hoyer lift, infections, medical emergencies, etc…, non of that bothered him. Those things were not as easy for me. I had a very hard time changing Mom’s adult diapers. I feared every time I moved her with her lift in and out of bed that I would drop her. I feared she would choke every time I fed her. My dad was also retired and could stay at home but it was hard for my husband and I to juggle work, caring for our son, and caring for mom even though my husband worked from home and I had a part time job and we actually had easeir schedules than most people. Our son loved being a carepartner for a while, but eventually it was hard for him when things got to be more intense. Eventually we moved into our own house a few miles away and in the last six months of my mother's life we moved across the country due to work opportunity.
We also all saw that my dad, while he could stay home due to retirement, he needed to go out. He needed time to do what he loved, which enabled him to be a fantastic carepartner for Mom. Plus, as Mom’s care progressed, one person could not do it all and us kids dropping in to help was not enough. For example, you need two people to safely use a Hoyer lift and changing and turning Mom in bed was not easy for one person. Therefore, additional caregivers were hired to come in daily for 12 hours and my dad took care of Mom at night by himself.
Our family also had the monetary resources to care for Mom at home as she went on and off hospice for three years. Off hospice we had to pay for her bed liners, diapers, creams, hospital bed, Hoyer lift, swabs, etc… Our house was remodeled so that my parents bedroom was on the first floor and completely accessible as her needs increased. My Dad bought a car with a ramp and clips for a wheelchair. Most people can not afford to actually care for a person at home in this way.
In order for us to be more comfortable in making decisions on dementia care, we need to do five things:
Insist on better care in care communities (nursing homes). Most people do not want to be in a care community because the care is lacking in dignity, respect, and a true understanding of best practices in dementia care. For example, incontinence is not inevitable in dementia. Rather the person usually just needs cues to remember how to use the toilet, or maybe they can not see the toilet because it is behind a door or in another room, or far too often the toilet is white and so is the wall and floor and the person can not even see where the toilet is!
Insist on better training for home health agencies who send aid to work with people with dementia. This training is virtually non-existent and often is just a 1-2 hour computer program that they voluntarily watch on their own time. And that training is rarely up to date and does not reflect accurately how to care for a person with dementia to give them the best life possible. For example, NO ONE should be sitting in front of a TV for hours every day- that is not a reality of dementia.
Be honest about what “till death do us part” means or what it means to “have to” take care of your parents. It needs to be okay that not every person can handle in-home care. What we really want is to not loose our connections and our relationships and those can be maintained in the home or in a care community. I have told my husband and son that if I am put into a care community I want them to come and do fun things with me- art, music, eat dinner, bring a therapy dog, sing, watch movies, read together, etc… And I want them to come and visit at a pace that is accessible for them.
Have a better understanding of hospice care, when it can be called in, and what the options are when you are taken off of hospice. Hospice care is a godsend and you do not wait until the last days of a person’s life to call in hospice. Hospice ensures quality of care and comfort and can be called in when a significant decline is shown and there is a possibility the person will die in six months, but hospice can be extended after those six months. Many people are on hospice for years, some like my mom are put on and off it over a period of years.
Talk about the actual cost of care! People do not realize how expensive it is to care for a person with dementia- at home or in a care community. We need more help to cover the cost of care becasue it should not be that only wealthy families can afford good care for their loved ones. Right now, since care in nursing homes is so bad in many places, many people pay for extra aids to provide additional and safer care for their loved ones.
If you want one-on-one guidance on what your options are for dementia care in the home and how to prepare the home environment for your loved one with dementia, please contact me through the form on the right. I offer phone and skype sessions if you are not local to me.