I was asked to share my caregiving journey on Healthline. It turned into a three-part series, and might have some information that you find beneficial.
I’m happy to be on the other side of the journey, and can now treasure all the skills I learned, and the moments I shared with mom and dad. Traveled.
I was the primary adult family caregiver for my parents for five years. My journey ended last Christmas when my mom passed away. I know I will be moving through a grieving process for many years to come, but was happy that her life with dementia ended. It’s a nasty disease that steals away our loved ones bit-by-bit.
I learn by doing and used this blog to chronicle many of my lessons in hopes that it may help others. One of the valuable resources you should be able to find in your community is a Life Care Manager (formerly referred to as a Geriatric Care Manager). They are usually nurses or social workers by training and have layers of additional education and practical experience required to earn this designation. Aging Life Care™ is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges. To find one in your area, you can visit the Aging Life Care Association.
Looking back, I could have called them in to help more and should have. There wee blocks of time when every visit to see mom was filled with medical follow-ups. I would have preferred to just visit mom and be her daughter than try to run down a host of issues from getting her toe-nails trimmed to a concerns about some intermittent dizziness she was experiencing.
The three times I recommend you consider hiring an Aging Life Care Manager include:
If you are in the DC-metro area, I am happy to provide a referral to some wonderful Aging Life Care managers. Recommended.
I was so happy when I woke up from a dream where mom didn’t have dementia. They started after mom died, and I hadn’t realized that for the last few years of mom’s life, she always had dementia in my dreams.
For the first time since mom passed away, I had a dream about her with dementia. Oh, it was awful and when it flooded back into my brain in the shower, I spent a few minutes crying it out. It’s been ten months since she passed. As sad as it was to absorb her death, I was also thankful.
Yes. I tell you that with some guilt. However, I know that my mom had hoped she wouldn’t have to live with dementia as she watched happen to her own mom. The odd thing was as my mom moved deeper and deeper into dementia, how hard she fought to live after each set-back. She never really bounced back and with each issue became more frail and in need of more care.
I’m perplexed by how we will get better at this as a society. The right to life movement doesn’t apply to people with dementia. It’s important to have those individuals who would step in to help you understand your wishes and beliefs completely because they will have to make choices you can never imagine nor can prior guidance cover. Statistically, 9 out of 10 of us will need someone to make choices about our last days on this earth.
I had choices to make and am thankful my siblings agreed with the final choices we needed to make on mom’s behalf. We knew she didn’t want to extend the qualify of life she was living so worked with the medical team to offer her a comfortable ending. I still carry some baggage and know much of it is still part of my grief.
I still miss her and I know that while the pain may subside, the loss will never truly heal. Changed.
This list comes from Kate Swaffer who after being diagnosed offers a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can more positively support people post diagnosis to do this. She has lovingly challenged, advised, and counseled me quite a few times on my journey. We even launched a Q&A blog where we peppered each other with questions.
As a follow-up to my go-to strategies for family visits, I plucked a few key tips to consider and am listing my top ten:
It is easy to read the list, but not as easy to make these part of your actions when you are visiting. I am going to share my individual experiences with each of these over the next month. It time for me to learn and I hope my mistakes will help you learn faster than I did!
Be mindful of the words you use, and forgive yourself when you make a mistake — just build on what you are learning. Recognize that the person diagnosed with dementia still has the same craving for meaning and purpose that is the core of every human.
The changes in behavior are not hidden personality traits. As the brain is changing, so is the person living with dementia. When you have met one person with dementia, you have met one person.
Thank you to Kate who continues to be a beacon of hope living with dementia working to provide us with inspiration, love and truth. Admired.
I learned the phrase “let nature takes its course” late in the game when helping my parents. For those of us who are trying to advocate for a loved one’s wishes, this is a powerful statement to know especially when you are dealing with the medical community.
Most members of the medical community are trained to help sustain or improve life. It took me a while to comprehend why my mom’s assisted living community kept re-initiating vitamins. On a quarterly basis, I would ask to see the medications. Even though they were supposed to contact me BEFORE changing medications, it didn’t always happen and I regularly had to address it. It started when they told me mom was refusing to take the medication she needed that was helping her anxiety, and that was causing a host of other community issues.* When I reviewed her medications, she had a host of daily vitamins. Mom was never a pill-taker, so she was exerting control by refusing to take any pills.
I know that nutrition and vitamins can help with a host of other issues, but I would request at the quarterly review that we discuss the merits of every medication mom was prescribed.
While I (and my siblings) managed through hospice with dad, and then with mom, it wasn’t until she broke her hip that I learned the importance of using this term and for requesting the right consults.
At 84, described medically as frail, and unable to walk on her own, a broken hip is a significant injury. Mom was with her personal care assistant and tried to turn and seemed to fall sideways. Her care assistant caught her before her hip even hit the ground so we didn’t really expect it to be a break. When it turned out to be a break, the aging life care manager I called in for advice suggested that the break happened when mom was turning. It made sense since while she normally bruised at the slightest bump, she didn’t even have a mark on the side where her hip broke.
The choices the orthopedic surgeon offered:
Two totally crappy choices. As soon as they took mom for x-rays, I bent over sobbing knowing that mom was only going to have a few more days or weeks of life. Not the ending anyone wants, but she would finally be able to leave this earth and her dementia behind.
The woman who helped me, Debbie Aggen, RN, CSA, met me in mom’s hospital room and suggested I request a geriatric consult, and use the words “let nature take its course.” The doctor quizzed me a bit on my mom’s wishes, was I sure this is what she wanted? Is this in her medical directives? Thankfully, the answer to both of these was yes.
Mom was too weak to withstand surgery, so our choices became fate. For more than three decades, my mom told me that should she end up like her mother who had memory issues, I was supposed to ‘put a pillow over my head and take me out’. Unfortunately, there are really no options for someone with cognitive issues in the current “right to die” movement.
I never thought this was how it was going to end. Hospice arrived to help us keep mom pain-free while letting nature takes its course. She died on Christmas Day. While it will most likely bring me to tears for years to come, I was relieved I finally helped my mom escape the life with dementia she was living. Granted.
*There are many schools of thought that with the right care, medication to control behavior would not be needed. However, since she was in a community, we couldn’t control how the other residents with memory issues would interact with mom and she seemed happier when she was taking the medications prescribed.
My mother made it very clear to me that if she ended up like her mom, I was to either “push grannies chest on her” or “put a pillow over her head and take her out.” She was always very matter-of-fact about it. So when mom developed dementia and I watched sadness creep over her, I was pained that I really couldn’t fulfill her request for a wide variety of reasons.
The movement for Assisted Dying for the Terminally Ill doesn’t cover individuals with dementia. A friend once shared that a shot of potassium would do the trick, but which one of me or my siblings would do it?
The coping mechanism that has helped me was to focus on was what I could control. I had to fight to roll-back all the medications and vitamins being prescribed for mom. I was very open in telling the doctor that my job was to make sure we weren’t extending the low quality of life my mom was having. There is a balance. There were some prescriptions that would help avoid the skin tears that started to plague my mom. In her last year, I told the doctor if there was no option for pot brownies, then he needed to find her a happy pill. The reason I asked about the pot brownies is that I’ve had several families tell me this has helped their loved ones, and eating a brownie is something I know my mom would gladly do, while taking a pill was still something she resisted. The doctor was surprised by my request, and being in a state without medical marijuana, he suggested a medication that helped.
After mom broke her hip in mid-December, I was able to work with hospice to make her ending as quick and painless as possible. It has left a mark on my soul that still pangs me every so often. However, I knew that is what my mom wanted. I’m still not sure if the pang is guilt, grief, or just a combination of emotions.
Unfortunately, for those with dementia, there are few options to help.
When a daughter shared that her dad diagnosed with Lewy Body was asking to die, the pang I felt about my mom returned. This is torturous for both the person with dementia and their loved ones.
Recently, I ran across the story of Dennis McCullough in the form of his obituary who was the pioneer of the term “slow medicine.” As a geriatrician, he describes “slow medicine” as not a plan for getting ready to die, but a plan for caring, and for living well, in the time that an elder has left.
Back in 2008, he wrote a beautiful piece about Slow Medicine. I hope this idea can help you find peace on your journey. Confessed.
According to The Washington Post, 8 in 10 people of all ages think it is important to talk to their doctor about their end-of-life wishes, but fewer than 1 in 10 report having had these discussions. After having to sit bedside for two parents in the past three years during their end-of-life, this makes me both angry and sad.
I was blessed that I knew my parents as an adult and we often discussed all kinds of things, including views on incapacity and death. Both were in hospice care, and we had time to say our good-byes.
However, there are many aspects of this issue that only a loved one may understand. I recommend you take some time to read the article When a doctor and a patient disagree about care at the end of life (The Washington Post, April 19, 2016). The article lured me in because my mother’s doctor said we had to lift the Do Not Resuscitate (DNR) order before she would consider mending my mother’s broken hip. I was speechless and overloaded by the idea that to abate my mother’s pain, she might return with broken ribs and move into a deeper realm of dementia after surgery. What kind of choice is that?
I called in some help from an Aging Life Care Professional and was advised to request a Geriatric consult. The doctor spent time with me to understand my mom’s mental status and health care wishes. In the end, her health was deteriorating and she would never qualify for surgery.
End of life choices aren’t for sissies. The earlier you start talking about the real choices your friends, colleagues, and loved ones are having to make, the easier it will be for you to be clear about your choices with those that will step in to speak for you should you need it. Recommended.
A good option to help start thinking about this topic and choices that might have to be made is The Conversation Project. Get your free kit here. It’s much easier to do this when you are healthy and no medical concerns are looming.
Once you find yourself on the caregiving journey, you will be introduced to a network of individuals who spend hours helping others because they know how difficult this journey is to walk alone. They see the holes in the safety nets being put around our loved ones and stay involved to make things better for the others.
One women I met when she was caring for her mom is Ellen. She was near the end of her caregiving journey, and we were just getting started. She shared this story with me which not only brought tears to my eyes, but filled me with relief to know that even a doctor recognizes the huge need for a bedside advocate, as well as the confusing nature of the medical system and how even small details can make a huge difference when it comes to care.
In the final weeks of my mom’s life, I was in the hospital after she broke her hip. I was lucky to have a colleague that is an Aging Life Care Professional and a nurse who was able to help me navigate mom’s hospital stay and guide me on how to ask for and get the right resources.
For some insight that may help you in the future, check our Dr. Moss’s story: 6 Medical Breakdowns in My Mother’s Care. And 1 Close Call Experienced.
I still tear up when I think about my Dad. He died nearly two and a half years ago. As many of us who have a loved with dementia, we also recognize how much me miss them while they are still here. We buried mom a few weeks ago (Arlington National Cemetery takes around 3 months from death to burial) in what she wanted to be a life celebration. I think we did a pretty good job of following her wishes.
The weeks after her death turned me into a swirling dervish. I spent more than a week polishing nearly every piece of silver she had given me or that I purchased with her when I tagged along with her to an estate auction. I polished the corner display cases my parents gifted when they down-sized. I reorganized my work room.
About a month after my mom’s death, I had a dream of the mom that I spent the most time with. She was funny, tart, driven, and opinionated. I had a great adult relationship with her. When I woke up, I quickly recognized that I hadn’t had a dream about mom before the dementia for years. It was wonderful and sour simultaneously.
I’m moving through the stages. I’m starting to recognize how different this journey could have been for all of us had we known the ending. I spent nearly 5 years entrenched as a sandwich generation caregiver. It was so overwhelmed that I needed to roll out of my corporate job to stay sane. I found a healthy outlet in building MemoryBanc, but I also sacrificed 5 years of an executive income. According to AARP Public Policy Institute, the average female caregiver loses $324,044 in wages and benefits. My inheritance simply turned into a replacement for the compensation I would have made. I recognize how lucky I am that I even had that benefit–most caregivers don’t.
Had we known the timing, I probably would have hired more help for mom in her final year. I wish I could have just visited her as a daughter. We believed Mom’s money needed to last possibly ten more years. Most visits included follow-ups with the nursing staff on a nagging issue or concern, or a request to the community for a door-lock, painting classes, or just to get a sense of how they felt she was doing. We still have many voids in our system to care for loved ones. I hope to find a way to bring those services, and information about the options, to the families that need them. Focused.
My mom had fallen and as a precaution her memory care community suggests we send her to the Emergency Room because she is complaining of leg pain. When I arrive, I immediately understand that everything for mom has just changed. Her leg is propped up but she looks uncomfortable. Any attempt to move her leg results in “wait, wait, wait.”
When they take her for the X-ray, I use the time to unravel. I know that she has broken her hip and know that the next 24 hours is going to result in some difficult decisions. Mom is 84 years old, described by her doctor’s as “frail” and well into a moderate stage of multi-infarct dementia. When the doctor comes in to confirm a broken hip, she gives me two options: Surgery or No Surgery.
Because I already experienced the consequences of a broken hip with my father who was in excellent physical condition, but never really cognitively bounced back after anesthesia, I cringe at the idea of what would happen to my mom.
The doctor explains that we would be doing surgery for pain management, but the Do Not Resuscitate (DNR) order in place would have to be lifted if this option is pursued. Now it’s mine turn to say ”wait, wait, wait.”
I realize it’s time for me to call in an Aging Life Care™ Professional. I need help navigating the choices for my mom and making sure I follow her wishes for end of life care.
I called Caring Considerations and by morning Debbie Aggen, RN, CSA® meets me in the hospital room. I explain to her that for pain management they suggest surgery, but are telling me I have to lift the DNR in place for my mom. My mom was very clear that should she lose her cognitive abilities, I should put a pillow over her head. While that isn’t really an option, when the doctor and I discussed it two years ago, the doctor put into place the DNR. Should mom have a critical medical emergency, she did not want extra measures taken to sustain her life. I don’t understand why the doctor is insisting that if mom has an issue during surgery that they be allowed to resuscitate her. I can only imagine a weaker and battered mom coming out.
Debbie listens to me and reviews my moms charts. She recognizes what I could not, my mom was most likely not even going to be able to qualify for surgery. She gives me some language to use and suggests that I ask for a geriatric consult. When the geriatric doctor arrives, I get to have a real conversation about my choices and my moms wishes. Eventually mom is discharged into hospice after it is determined that she has too many other health issues to withstand surgery.
Debbie visits my mom when she returns to her memory care community, She counseled me as I watched my mother lie in pain in her bed and felt helpless to soothe her. Debbie helped me understand the choices, and use the right language to help convey to her hospice team my mother’s wishes and ensure she was comfortable during this last stretch of her life.
It wasn’t easy and I had a host of engaged siblings. However, none of us knew how to best navigate mom’s condition and having Debbie by my side and a phone call away was a lifeline for me as I struggled to help mom. I hope more families will begin to understand the value of professionals certified in aging life care / geriatric care management, which is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges.To learn more about Aging Life Care, you can visit the website for the association of dedicated to supporting these professionals. Benefited.
One of the best gifts my mother gave to us was the summary of her funeral wishes that she wrote up more than 30 years ago, and had revised in early 2002 when they updated their estate plan to include a trust. In her guidance, she mentioned the dress she wanted to be buried in. Had she not done that, I just realized she might have been buried unclothed–or it least not in something she loved.
Over the course of our journey and this blog, I have told you about the two times we have moved mom. First, when we moved mom and dad from their Independent Living residence into Assisted Living. Then after dad passed away and Assisted Living was no longer the best place for mom, we moved her into a Memory Care community. During the first move, we took special care to find and store the dress she wanted to be buried in. Knowing that in advance and being able to plan for it is helping me move toward her life celebration service easier. I don’t have to wonder, squabble with siblings about the choice, or feel guilty because in the overwhelming process of one of the moves, we ended up donating her silk ball gown thinking she would never again wear it again.
Today as I drove mom’s clothes to the funeral home, I realize the car is filled with the scent of my mother. It has been years since I smelled the mix of Aqua Net hairspray and Charlie perfume. I start to wage a battle of my will over my tear ducts. I lose momentarily and then begin to fill my mind with all the wonderful memories of mom from my 50+ years with her.
My grief over the loss continues to battle my relief and understanding that mom’s journey on this planet had run it’s course. Now is the time to revisit all the great experiences, lessons, and memories that contribute to the legacy of mom. Cherished.