I have an ongoing battle that rages on in my brain about where mom should be. I wonder if we should have moved her in with us, but recognize that caring for my parents has already overshadowed some major segments of my life. I want to do what’s right by her, but also want to be a parent that’s available to my children. Since I was a teen, my mom had told us she never wanted to live with us or be a burden. Now that she has dementia and my dad is gone, I move through an ongoing cycle of joy, grief, frustration, guilt, and overwhelm.
We took time finding the right place for mom after recognizing the community that she was in wasn’t the best place for her and her changing needs. My mom’s primary care assistant told me about the gentleman that comes in to visit and that always dances with my mom. WHAT?
My mom was not a dancer and I was thrilled to see her get up and dance. That is something that would never happen if she lived with us. I continue to talk myself through why we made this choice and why it’s the right decision for mom. It was fun to see my mom dance. Revisited.
The earlier you start talking about this the better. If you are having the discussion with a parent, always go in respecting the parent/child dynamic even through you may be 60. Consider this a conversation where you are trying to understand how a good friend, and someone you love is planning on spending the rest of their life. Some ways to do this include:
Ask mom and dad how they plan on spending their 60s, 70s, and 80s. Where do they want to live and how do they want to spend their time?
Request recommendations on how to approach estate planning. When did they do theirs and how did they decide who should be their advocate if one of them is unable to speak for the other?
Share a story of a friend or colleague who faced a difficult family health issue and talk about how your family might have handled the situation differently.
Unfortunately, you may have to wait for a pivotal event to happen before mom or dad are ready to have this discussion with you. Let me know if you have some additional suggestions on how to get this conversation started and I hope you will share which ideas helped your family.
For a free guide on how to organize your documents, accounts, and assets so that you can easily find them, or share them with a loved one should they ever need to help you, visit MemoryBanc.com/save.
Today my mom turned 84. Taking mom out has been overwhelming and while I am in the process of getting a travel wheelchair and a DMV parking form, it made more sense to celebrate with her in her community. We are both adapting to this new normal.
I focused on bringing in some of her favorite things, a hamburger and cake for lunch, and took the advice from some of the readers about the activities they do with their loved ones.
We started with the hamburger and Mom quickly dug in.
Next we sang Happy Birthday. Mom joined in the singing, ate some cake and then moved onto gifts and activities.
Thanks to those of you who made suggestions about some other activities to try. Some of the new ones include:
Magic Painting. This came from Mary (Thank you). I recalled using it with my daughter when she was young and we were unable to find any for mom’s birthday. So instead, we got a stained glass window kit. We had a good time doing this together and now the completed work hangs in my mom’s window. It goes well with the 4 oil paintings hanging in her room that she painted herself years ago. It took some time for her to feel confident she could put the pieces in the right spot, but we traded off and she watched as we struggled to get the shapes in exactly the right spot too.
My daughter was trying out some painting that included water colors on the pages. One word of warning: lots of other residents will be attracted and come visit while you visit. Unfortunately, one of the residents drank the water-glass for the paints before my daughter could stop her. Thankfully, they are non-toxic. We will try this again next time.
Mona Lou (Thank you) mentioned doing real painting. This requires a room that can be locked since it’s more time-consuming. My mom was a painter and unfortunately, her community doesn’t have this activity, but I’m working on seeing if it might be something they try out.
Mona Lou also mentioned music. I could always get my parents and then just my mom to the events with music in her old community. The bigger the band the better. She hasn’t been very interested in the solo musicians or just listening to recorded music and the new community doesn’t attract or schedule the big bands. Just because she doesn’t like it today (or does like it today), doesn’t mean she won’t enjoy it tomorrow. Always open for trying good ideas again.
Hand-holding. Thank you to Remember Me who mentioned this is always a nice way to spend time with his wife. I agree. I shared my feeling that hand holding was underrated as I was navigating my dad’s cancer options about 2 years ago.
Animal picture books. Mary also shared that she created picture books with a wide variety of animals they could look through that her dad enjoyed.
This milestone felt like just another mark on a long journey on which I’ve embarked. Thank you for offering many new ways to re-engage and spend a nice day with the mother I love. Celebrated.
I think my mom’s favorite activity now is napping. She has really slowed down over the past few weeks. In hopes of having a visit that didn’t involve me watching her nap, I brought activities with me.
So far I have tried:
Adult Coloring Books. My mother-in-law introduced one to our family when she gave one to my daughter as an activity on our flight to the church mission trip in June. Now I see them everywhere.
Manicure. On my last trip we sat outside and I removed the remnants of the red nail polish she got in early July. As soon as I was done and she inspected my work, she took a nap.
Pictures. While I always have a few pictures from the week on my phone, my mom has a hard time understanding what I’m showing her so I usually pull out her scrapbook and retell stories from our past.
I follow my mom’s lead and try to ensure she is comfortable and happy. It’s all I can do as I struggle with the fact that she continues to live in a state that she asked me to never let her fall into. Many of us fight the angst that we are failing to fulfill our loved ones wishes, while watching them slip deeper and deeper into dementia.
When it’s my turn, I sure hope we have more options on how to manage the lingering end of life when we are no longer leading the life we imagined. Prayed.
This weekend I was interviewed by Jennifer Franciotti on WBAL TV. She interviewed me about my best selling book MemoryBanc: Your Workbook for Organizing Life. While the simple answer as to why I wrote the book was that my parents health failed and managing all the information around their lives was overwhelming at times. Most of you know the complications, stress, grief, joy, love, and commitment it takes to be a caregiver. Having to manage all the details became the burden that overwhelmed me so I created a reference system to make their information easier to retrieve.
The silver-lining to my journey has been that the tool I created to help keep my parents information organized, is really a tool that can help millions of families. I’m honored to say I have already had many families share with me what a difference the system made in their household, from an active family of five, to empty nesters, as well as senior couples.
What we learn as caregivers, is that many skills we develop apply to our everyday life. Prepared.
A few years ago, when we didn’t yet have a diagnosis, but knew something was wrong with mom and dad, we were concerned that our parents would be victims of elder-abuse scams. We had a major incident when my mom hired two contractors for the same work, one of which charged 5 times a reasonable rate for the work that needed to be done. Thankfully, we were able to get the contract cancelled in time.
While we wanted our parents to hand over the checkbook and let us help them, my parents refused and were a little angry that we even suggested such a notion. I now understand that keeping control and having a sense of meaning and purpose is not just important to recognize, but a monstrous roadblock for many to overcome.
As my parent’s were losing control of the world around them, the one thing they could do was pay bills and send off donations to the growing number of charities asking for money through the mail. I started to notice that my parents were making a LOT of donations to new charities. For years, they had always done the donations once a year, after doing checks to validate the varied non-profit organizations and their finances. Now, I was watching weekly mailings to new charities I had never heard of.
It seemed that the charities that got money, freely shared the names of donors with others. The mail seemed to grow with more requests for donations. Most of the mailings showed up and looked like bills, or had language on them to the effect of “Here is confirmation of your pledge.”
When I asked my parents, they couldn’t even tell me what most of the charities did. When I asked why they were changing their annual donations to monthly, they brushed off my question.
I still feel like many of these charities took advantage of my parents. They seemed to count on the fact that my parents wouldn’t remember they didn’t “pledge” funds and in a way, coerced them into donating.
I fought with my godly self because many of the charities were indeed well run and regarded and doing good work. But my logical, righteous self grew angry over the ploys and tactics they were using on my parents.
Eventually, the checkbook did get turned over. As I was cleaning up some old files, I came across an old register and more than half of all the checks were to charities. While I still carry a bit of rage over the tactics, now that mom is unable to manage to even sign her name, maybe a few hundred dollars every year to these charities was worth the sense of independence it gave my mom when she could still write a check. Conflicted.