Category: Dementia and Family Dynamics

Caregiving or Enabling?

pushI’m intrigued to listen and learn from those of you who have a healthy parent and are helping them care for loved one. Several of you face many of the same frustrations my siblings and I faced:

  1. Refusal to make changes to status quo living.
  2. Dismissal of concerns regarding current situation.

We want to help, but get lured into thinking if we comply with the things wanted, we build trust to help them make the real changes they should be making.

In my experience, helping someone maintain a poor living decision doesn’t create a pool of good will, it just lengthens the time before the critical incident happens so you can make the needed change for better health and safety.

I vividly recall my mom calling me one evening to come over and help with dad, “it’s urgent!” I was so hungry to hear my parents ask for help, I would jump the moment they requested assistance. However, this was the third alarm this week and I happened to be on my way to take the kids for their flu shots. I had to decide if I was going to serve my parents over my kids. The fact that I kept responding to my parents alarms was wearing on my marriage. I needed to realign my priorities, and in effect, I was spending a lot of time keeping their status quo afloat.

After this incident, I decided to step back and let them fail.The next time my mom called with an emergency, I told my mom to call 911. This event helped illustrate the depth of the problems my parents had functioning and it turned into a 3-day stay at the hospital for my dad. Until this incident, most of my concerns about my parents were dismissed by my siblings. To be fair, my parent’s were good at putting on a good show when my siblings came to visit. I realized that my constant involvement was allowing my parents to continue with their status quo lifestyle.

Once I had made the decision to give up, I mentally detached myself just as my siblings were starting to engage. I was so weary at the this point, I told my siblings they needed to deal with it. The resulting conversations with my siblings resulted in me re-engaging, but now, my siblings were part of the support system for me. We set up regular phone calls, scheduled interventions, and moved toward solutions to keep our parents cared for and safe.

What I learned was that there is a fine line between enabling and being an involved adult family caregiver. Is now a good time to figure out where you might be? Asked.

 

Dreaming of Mom

momandkayI 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. 

 

 

 

 

 

6. Don’t talk about someone with dementia in front of them like they don’t exist.

brunchwithmom
My sister and I sit across from our mom and keep the conversation going.

This is a deeper dive into the sixth item from my list of things to never say to a person diagnosed with dementia. This one is a bruiser–and I watched it happen so many times by people that are trained to care with individuals who have dementia, that it shocked me every time.

Most often, issues come up in a medical setting. Early on, when we would visit a doctor, I would bring a note explaining my mom or dad’s diagnosis because MOST DOCTORS DON’T READ THE MEDICAL RECORDS. I would confirm with the person doing the intake that they got the note so I never needed to say in front of my parents that they had been diagnosed with “multi-infarct dementia” or “Alzheimer’s”. Before I adopted this tactic, my parents would respond with disbelief and anger which created a whole cycle of inquisition by my parent who never recognized or absorbed their diagnosis.

Unfortunately, when the doctor arrived, they would turn to ask me questions as if my parent wasn’t there. I would immediately turn to my mom or dad to see if they wanted to answer. They would usually say they had nothing to share and I would then offer up a response. I know that the doctor’s don’t have much time to be with the patient, but this is something that for humanity sake, really shouldn’t be rushed.

The worst was when it was done by the family. I understood they don’t know what they don’t know, but you could watch the family visit go sideways almost without fail when it happened.While they might not be able to navigate a conversation about even the weather, at our core, we recognize being slighted. It must be one of the most basic human qualities that helps keep us alive.

When we visited with our parents, my siblings (or my kids) and I would always include them in the conversation, even thought we might be carrying on the entire conversation.

There were several times when I would want to talk to my mom’s personal care assistant about something and I never did it in front of my mom. We would meet outside of her room, or take a quick walk together.

As the person with dementia is losing the ability to remember or even navigate their day, the thing that needs to remain is their sense of worth and that element of them survives all the way to the end. Witnessed. 

The legacies we leave behind.

CandlesticksRecently I was asked “to recall a legacy–anything tangible or intangible, large or small–that I received from someone who cared about me.” I immediately recalled how my parents created a culture of healthy debate within my family. Around the dinner table, we learned how to disagree, without being disagreeable. We were taught to question and understand, along with a healthy dose of empathy.

Thankfully, the things my parents taught us helped my siblings and I navigate their care. We certainly had disagreements, and early on put in some rules to help us that I share in a prior post on Caregiving and Siblings.

We never second-guessed that we should step in and help, and after recognizing we were losing our parents, agreed that we didn’t want to lose each other along the way.  I know we were very lucky.

The journey as a caregiver allowed me to share an extension of this legacy with my own children. They have seen me care for, and navigate some very difficult times. Some things we shielded from them, other things I had no way to hide. They have seen me work with my siblings, heard us argue, and watched us overcome disagreements and work together.

This past weekend, my siblings came to town and we went through the last few boxes of our parent’s belongings.Before we began the process of taking turns to divvy-up items, we asked if there was something very important to any one of us. When it came time to go through the last of the silver, I spoke quickly and told my siblings the silver candlesticks that sat on the dinner table were very important to me. Without any hesitation, my siblings all told me they were mine. They were not the most valuable of items, but represent a lasting legacy my parents left me and I hope to continue to share with my kids.

I can’t wait to get downstairs and polish them. Excited. 

P.S. Thank you to my siblings and their spouses for helping clear out the final boxes of my parent’s possessions. At the end of the weekend, I felt like a barrier in my grief was lifted as we found loving homes for the last of their belongings. My job as caregiver for my parents has officially ended. 

Caregiving and Siblings: It’s Important to Make it Work

kaywithsibs
Photo credit: Guy Browning (thanks for letting me boss you around to get this photo)

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:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. 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. 

 

 

Adjusting Hope When The Options Are Bleak

hopeWhen the doctor confirmed mom’s hip was broken, she gave me two options. No surgery, or surgery, but we would have to remove the Do Not Resuscitate (DNR) order in place. Mom has been using a walker while assisted and in a wheelchair for months. She wasn’t interested in working to walk again so the surgery would be for pain management. My guideposts for mom’s care have been how does she feel and how does she look. She should feel as comfortable as possible and maintain as much of her personal style as her health allows.

Of course surgery seemed like the right course, but would they return mom with broken ribs as well after surgery because her heart stopped? As I sit in the E.R. waiting room, I review the hundreds of times my mom said “If I’m like my mother … don’t have my wits about me … am in a wheelchair … put a pillow over my head and take me out.” Yeah, she said this to me in varied forms for more than 20 years. I am glad my mom made sure I knew what she wanted. I’ve been trying to balance her wishes with the real choices we face. We put in the DNR as recommended by her community after she moved into assisted living with dad and was well into a moderate stage of her dementia.

Two years ago we faced many of these decisions for dad who had cancer and was in a moderate stage of Alzheimer’s. Thank you to Kathy S. for reminding me what a gift of love my dad offered by going first. I am so much better prepared to help my mom, but it doesn’t make the choices any easier.

We followed the recommendation for surgery, but learn after a day of tests that mom has both a lung and heart issue that would have to be treated most likely without success before we could again consider surgery. The medical, ortho, and geriatric doctor all recommend against surgery now. The significance of that to mom’s comfort is devastating.

We have moved my mom back to her community and she is in hospice care once again. Through this she has been frightened and tense. My mom never closed her eyes for more than a short blink through 4 courses of morphine the first day. She was so tense, movement was more painful than it should have been.

Now back in her community, we realize she may have had another stroke during the process. One side of her face is drooping and she is unable to really communicate with us now. I am blessed with a personal care assistant who has been with her for nearly a year that knows her well.

For now, I have to adjust my hope to keeping mom pain-free, and that she will join dad after a short visit with her children who all want the best for our mom. Hoped.

Navigating Care with Your Siblings

Family2004Every family has some conflict. When my parent’s health started to fail, it took time for my siblings to catch up to me. I was the local one who spent a lot of time with my parents as an adult. I noticed changing behaviors and memory issues. Every attempt to help my parents was poorly received, even when they called me to ask for it. By the time my siblings started to see the issues, I was resigned to silently watch and would respond when the hospital or the police called me. When my siblings started to see how poorly my parents were doing, they had to talk me back into trying.

Together, we set up interventions. All four adult children brought in lunch at my parent’s home and we shared our concerns together. Both times, our parents were polite but rebuffed the suggestion that they should consider any lifestyle changes. During this time, we set up monthly phone calls to touch base on issues. We used a free conference call site called TalkShoe.

When the retirement community threatened to terminate my parents continuing care contract, we moved to weekly calls as we prepared to navigate a very difficult period. We have had disagreements over everything from care choices, the disposal of assets, and even the menu at my dad’s burial. Early on, we set up rules of the road to help us. We agreed that:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. 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.

With four of us, you would think we would have had issues with voting. If we found the topic got a little too heated, we would table an issue and plan on date and time to reconvene to discuss it.

I had already stepped in and had collected information (using the MemoryBanc Register) on most of their accounts after they signed two contracts for home repairs and one was predatory. I was on the bank account and was monitoring cash flow and bill payments in the background to ensure they were not victims of fraud. We had to prepare and sell their second home, down-size furniture, sell cars, distribute family heirlooms … and figure out how we would manage and share the load because it was too much for one person to bear.

We made up a list and assigned roles. Here is the guide we used to help:

Care Giving Role Duties Responsible
Physical Provide or support activities of daily living (dressing, feeding, bathing etc.) and ensure safety.
Medical Manage the medical needs, doctor visits and medications. Coordinate with various doctors and follow-up on issues and concerns. Healthcare directives, Medical Power of Attorney, Do Not Resuscitate (DNR)
Personal/Financial Manage bill payments and cash flow as well as knowledge of legal documents and locations. Will need Financial Power of Attorney, be on bank accounts.
Investment Understand and manage the investments and other financial assets.
Legal Manage legal review of documents and if different coordinate with Personal/Financial to ensure documents in place and timely.
Historian Collect, organize and archive photos, letters, family keepsakes.
Realtor Lead decisions on property and manage vendor selection and transactions.

We were able to work through a host of issues that could have shattered any family. Luckily, we were able to use this to build stronger bonds. We still schedule regular calls to review finances, mom’s care, and discuss any ongoing issues, but now we are all on the same page and able to focus on doing what is best for our mom.

This breakdown and how we navigated won’t work for every family, but I hope it will give you some idea’s on what might work for yours. Shared. 

Flirting with Normal

brunchwithmomThis past weekend my sister came to town to visit with Mom. On Sunday, we took her out to brunch. It’s been a while since I have gone to a sit down restaurant with mom. The addition of the wheelchair and mom’s declining health made it difficult for me to confidently have an outing with mom alone. I knew it would be easy to manage with my sister, so we made a reservation for brunch.

After we were seated, we just chattered away. My sister talked about her jobs as a waitress when she was in high school. She remarked that she hadn’t thought about those jobs in many years, it must be the visit home that sparked the memories.

Two of mom’s favorite meals are fried chicken and waffles. We were pleased to find “Chicken and Waffles” on the menu so we could get her both! We were surprised by how much she ate.

While my mom didn’t talk very much, just having all three of us at the table was pleasant. My sister and I could keep the conversation going and my mom was tickled by a few of the stories we could share. Life for a few minutes felt very normal for all three of us. Delighted. 

transportchairDear Ellen: Thank you for loaning me the transport chair. We made good use of it and I know it will come in handy for many more trips. You are a blessing to so many people. <3

Others step in when you need it most on the caregiving journey

amymessageI was recently asked about my caregiving journey. It’s been long, strenuous, challenging, rewarding, heart-breaking, fulfilling, and relentless. We recently moved mom to a new community focused on caring for those with dementia. I immediately lost one of our long-term caregivers, and then a second regular within the first two weeks. My mom’s not integrating into the scheduled activities. I got enough calls about it that I met with the Executive Director who suggested we consider new caregivers. This week we are trying out two new assistants to help get mom in synch with her new community. I know the change isn’t good for her, but for the short-term, I know if we get her to participate in the scheduled activities, we can get the extra-assistance out of her room.

She is now in a smaller room and the caregivers are with her from 8 a.m. to 8 p.m. She doesn’t like that others are with her. In her old community, they could sit in a connecting room and she didn’t know they were there. Now they are within a few feet of her during the day and she’s choosing to sleep more.

My golden rule with mom: If it doesn’t make her happy, don’t do it. I am trying to figure out how to get her more independent so we can eliminate the personal daily assistants (pdas). To do that, we need her to engage in the community. This challenge is weighing on me. Thankfully, I have very engaged siblings and my brother and his wife are coming to town to visit with mom this weekend.

Yesterday, a volunteer with the hospice company called me to ask if she could stop by and visit my mom? YES! I call her back to share more information about my mom and she tells me she will stop by to visit mom at dinner. I know my mom with enjoy company for dinner. She sends me a nice text after her visit and tells me she will visit her again on Friday.

This woman is a ray of sunshine to me. She has no idea that for decade leading up to the early signs of dementia, I ate dinner with my mom every Tuesday night, and then my parents came to my house for dinner every Friday night. The reconnection to this memory brings a smile to my face and the idea that someone else will stop by to visit mom in her new community and have dinner with her every Tuesday and Friday night brings joy to my heart.

The journey is long, but there have been and will continue to be so many people who have walked with me it makes it easy to continue on. Appreciated. 

When is it time to make changes?

optionsThis is one question I get frequently. My answer will always be “NOW” since you are asking me the question, but typically the response includes five reasons why the change can’t be made. Once you have verbalized the question, you must acknowledge that you probably already know what the real answer will be. It’s just not easy to help a loved one make the changes when they need to or better yet, before they need to be made in haste. Making the change before it’s required gives you a variety of options.

Our parents told us they had a plan, started to execute it, but then stalled when the big changes needed to happen. They purchased a place in a Continuing Care Retirement Community (CCRC), but always treated it like a vacation home that was visited a few days a week. They kept their “downsized townhouse” and would share the “milestones” that would trigger their move into the CCRC apartment full-time. The milestones came and passed.

We were thankful a doctor had my parent’s license’s suspended, because they refused to listen when all four of us kids sat down with them and suggested it might be time to give up the car keys. We did this twice over a two-year span. We eventually had to be sneaky and hide the cars because my parent’s continued to drive even after their licenses were suspended. They tore-up the suspension letters and kept their licenses. When we found them driving and asked them if they realized what they were jeopardizing by driving without a license, they would open their wallets and glare at you like you were a bald-faced liar.

Looking back, you realize how progressed their dementia was well before it was ever diagnosed. The family notices first, whether its a personality or a behavioral change. We pushed to get them to a doctor that could provide them with more than the mini-mental exam most often used by general practitioners to determine if a patient might have dementia. Two years after my father was diagnosed in a moderate stage of Alzheimer’s, he was scoring 29 out of 30 (27 and above is considered normal) on the mini-mental exam.

As my parent’s declined, their pursuit of independence and maintaining their current lifestyle grew stronger. We worked with the retirement community to move them into Assisted Living after they determined my parent’s could no longer safely live in the Independent Living community. Had my parent’s accepted a caregiver when they lived in Independent Living, it would have delayed a move into Assisted Living. They refused to accept this change and were forced to move. We negotiated two weeks to coordinate for the move and the community notified my parents they had three days to move into the Assisted Living apartment. It was a herculean effort that could not have happened if I didn’t have three other siblings. We were fortunate a larger room in Assisted Living was open when my parents had to move.

When my Mom kept misplacing her purse, I opened up a new checking account so that she could keep a checkbook in her wallet, but not jeopardize their retirement income.

Unfortunately, in my experience, all the changes were made late and were incredibly stressful. In hearing other’s stories, I know we are not unique. Most families have to wait for a critical incident before any change is considered. Once you make the change, you wish the change had come sooner.

I was physically ill days before we had to move cars, move my parents, and introduce a caregivers. I felt immediate relief when the change happened and wished it would have come sooner. My parent’s also benefited from the change.

I believe from the information I have read, as well as from my experience, that the earlier the change happens, the better the road for everyone involved, especially someone with dementia who progressively has more difficulty with change.

Everyone and every situation is different. I only hope that when you start asking these questions, you will consider the consequences of not making the changes now. Hoped. 

 

 

Managing End-of-Life Wishes and Caregiver Suggestions

carveouttimeWe hired extra assistance (personal daily assistants or PDAs) for my Mom so she has someone with her and working toward her comfort daily from 8 a.m. to 8 p.m. even though she is in an Assisted Living community. She has also been moved into “hospice” care so there is a second doctor, social worker and nurse monitoring my Mom. I have found that having more people and organizations involved in her care has created more complexities to my family caregiver role. I spend a lot of time on the phone and meeting with her caregivers.

What’s become both a blessing and a challenge is that I’m getting advice and recommendations from a variety of caregivers. The three women who are with her the most continue to suggest we add vitamins to her diet. She eats very little and I understand their concern, but then feel guilty when I explain to them that my Mom doesn’t like vitamins and we feel like it would be the choice she would make if she could.

My Mom made it clear she would not want to extend a life of low-quality. I shared my angst over the idea of even having her drink Ensure. After speaking with the Social Worker from hospice and the head nurse in her Assisted Living community, I moved past my concern when I watched her enjoy the shakes and they helped sate her hunger. My bench-mark is to know that what we give her brings her pleasure. I know the vitamins would not bring her pleasure.

My siblings and I continue to struggle to know what things keep her comfortable and what things may just extend her life. It’s not such an easy black and white choice. I’m thankful that I have involved siblings that come to help, call to ask how they can help and bring varied perspectives to our journey to care for our Mom in this last phase of her life. I was lucky my parents told me how they wanted to live, as well as how they didn’t want to live. Because they started this conversation so early in their lives, it never felt uncomfortable.

This Thanksgiving, I hope you will carve out some time to start the conversation with your loved ones on how you plan to live the rest of your life. I’ve included two great resources below, and hope you might start by sharing with friends and family your ideas about how you will spend your time in your 60s and 70s; where you plan to be living and how you will be spending your time.

I am lucky my parents shared their thoughts with me. It has made a difficult journey a little easier knowing that we did or are doing what we can to honor their individual wishes. Thankful. 

ADDITIONAL RESOURCES 

AARP Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams by Bart Astor
Life after 50 isn’t what it used to be. The rules have changed. No more guaranteed pensions, retiree health plans, or extensive leisure and travel. It’s time to forge new paths and create innovative models. That’s where the AARP Roadmap for the Rest of Your Life comes in. Bart Astor, author of more than a dozen books, offers a comprehensive guide for making lifestyle decisions, growing your nest egg, and realizing your goals. It’s a positive read I highly recommend.

The Conversation Starter Kit
If you want to be the expert on your wishes and those of your loved ones, not the doctors, nurses, or end-of-life experts, check out this free resource (donations accepted) that includes easy discussion starters for the coming holiday. This doesn’t have to be a gloomy conversation. I was lucky my parents shared their wishes with me.