Dementia has taken our parents from us incrementally and cruelly*. We faced many hard decisions through the journey.
The most notable legacy my parents left behind was adult children that could work together. We had to overcome a host of challenges as my parent’s health was declining. We are like many families, we’ve got baggage from childhood and we problem-solve differently. Our parent’s estate plans named my sister because she was eldest and a lawyer. But my sister lived on the other side of the county, so it wasn’t really the most practical solution. It was one of the first things we had to discuss and addressed. I am the only local adult child, so it only made sense for it to be me. As the youngest, it brought in some expected issues like why would anyone listen to the “baby” of the family–with my parents in the lead. It took time to develop this new relationship.
I’m crazy for process and clear-cut solutions. When we began to have disagreements, I proposed some working rules for working together and that we adopted. They were:
- Spouses are invited to participate, but only direct descendants vote.
- It’s okay to disagree, but not okay to be disagreeable.
- Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.
We were blessed to be raised by parents who taught us how to communicate, even when we disagreed. We weren’t always in agreement, and noticed different things at different times. But we needed to work together to help our parents, so we did.
I hear the same issues from many other adult children I have talked with over the years. Most often, I hear how the conflict tore the family apart. I’m thankful that it really brought us closer together. We used an online site for free teleconferencing called TalkShoe. Putting us all on the phone together had a positive impact. We could hear the tone of the voice and ask questions of each other. It also allowed us to listen how our siblings communicated with each other. We eliminated the “he said/she said” misunderstandings.
When my siblings realized how much time a week I was spending to help, they suggested I get compensated. It wasn’t a huge amount of money, but it was recognition that I was spending a good portion of every week visiting, advocating, and assessing mom’s needs. My husband and I actually built the idea of compensation into our trusts because we have experienced it first hand and understand the toll caregiving takes on not just the primary caregiver, but the caregiver’s family.
My siblings were engaged, supportive, and I know many other families blow up on this road. As hard as this journey has been, I recognize how many blessings it has also brought to me, my family, and my siblings. Humbled.
*I don’t know if someone else said this first. Over the last week I wrote it on a post-it note when contemplating our journey. Please let me know so I credit you for this statement which felt very apropos to this post.
I too have heard the horror stories so it is so glad to hear how you and your siblings supported each other. Thanks for providing the rules and tips your family followed, I think that will be helpful for others going through a similar situation.
It is truly amazing how childhood issues, thought resolved, come back during this difficult time. Your suggested ground rules are fabulous. Wish my family had them when we started this journey. I did suggest them after reading a previous post you had written, but was met with total resistance. Not surprisingly from the brother who only know how to disagree by being disagreeable. With Mom now in Assisted Living, it has been much easier because we don’t need to interact as much.
Now my husband’s family is starting this journey with his parents. ALL of them only know how to disagree by being disagreeable, especially when disagreeing with each other. Sadly, their childhood issues still are being brought up….and the youngest is 45!
I am still hopeful for both families though.
Good article. Always enjoy your articles. Could you write in a future one about compensation being built into the trust? That is a great idea and definitely a sore topic for many families. I was the only one who was retired, so it was expected I help Mom when she was still living at home — to the tune of 4 long days & Mom lived 65 miles away! (An aide was there the other 3 days.) After a few months, I insisted on payment. Did get it, but to this day am considered greedy. Was able to keep Mom in her home for an additional 6 years. Moved her to AL a year ago.
I will write about this more. We were fortunate that we could manage without both of our incomes, but the opportunity cost was great in terms of income. I’m sure there were other things you might have done with your time.
Absolutely! Payment to me made the difference so I didn’t have to go back to work. As soon as Mom went into AL, I started working part time elsewhere. I found myself, my life, and my wonderful husband again. AND Mom remembered me as her daughter whereas for the previous 4 years she thought I was her sister or her mother.
Interesting post Kay. My involvement with dementia is as a husband, brother and son. I’m the prime Care Partner for Maureen. My sisters are on hand top look after my mum’s welfare. At first I was dreadful as the interfering visitor for mum but we have resolves tthe difficulties that surfaced a few years ago. My sister in law looks after my brother’s welfare and I give her support whenever I can.
As I am Maureen’s second husband it is taking a while to sort out positive involvement from her sons. I now think we are getting there but at times I have been very impatient with them.
Perhaps it takes us all time to accept the diagnosis and then develop how to deal with the condition. It’s all a work in progress a bit like the Grand Natioanl rather than the Derby, to put it in horse racing terms.
You do have some added complications and twists. Please share other items that worked for you. It is truly a marathon, and not a sprint. It took us time to find our own balance.
Good post, Kay. I like the quote and haven’t seen it before. It is very apt. I like your rules as well, which I’m sure could help other families. I was lucky because my sister lives in the same town and we get on well. There were times when I felt a bit resentful that I was the one who gave up most of my freelance writing work to be with dad while she took on extra shifts at work but she is alone and I have a partner. And we could talk about feelings, which helps prevent simmering resentment from exploding.