Category: My Dementia Caregiver Story

Managing dementia over the holidays is difficult

christmastreeI feel guilty as we are rolling into Christmas. When my Mom suddenly failed last month and we were advised that we should move her into hospice, I was thinking this would be my first Christmas without a parent. I was both sad and relieved by that idea.

My Moms quality of life is beyond low. She seems constantly agitated and bewildered by the events around her. She still does not understand how she ended up in wheelchair. She never seems to be comfortable. She’s also entirely dependent on someone else to help her do everything, which she bristles about. All I can do is make sure she is as comfortable as we can make her and advocate for her wishes.

Because I didn’t think she would be here, I didn’t order the little Christmas tree for her room she treasured last year. I hurt walking down the hallway filled with wreaths to arrive at her empty door. I fixed that on my next visit and we made a new wreath in the shape of a star for her door together.

The holidays are always difficult. There are new places and faces and a lot of activity. You strive to uphold the cheer of the family gathering, but often find you are managing around embarrassing moments.

We learned to avoid celebrating holidays on a day other than the real day – it just confused my parents when we celebrated Thanksgiving early one year. I have a few posts from the last few years on trying to manage through Christmas. I smile and grimace as I reread these older posts.

My one bit of advice is to simplify activities and enjoy the time and connections you can make with those you love the most. Consider writing them down. My guilt dissipates as I reread my posts knowing I’m doing the best I can. Wished. 

Please Santa, let me be the smiling lady that gets up and dances

friendslistentomusic2Some things the retirement communities do right. The keyboard musician that visits regularly is playing Christmas songs today. I hang around with my Mom and we sing along to the songs and I watch the joy that his music brings so the many residents grouped in the living room today. I can’t resist singing along, even though the general idea of keyboard music doesn’t appeal to me in the slightest.

A few weeks ago, an old friend of my Moms came and sat with her when the musician was visiting. It’s a nice way to pass the time with my Mom. She loves music and isn’t challenged to try to make small talk.

Each time I visit, I notice one of the other residents. She is always alone, well-dressed, and smiling. I’ve never seen her speak with anyone, but she gets up and dances when music is playing. As I sit and witness the many ladies that work at the community having fun dancing and inviting the residents to join them, this one is already busy dancing around to the music without a care in the world about who is watching. I’m a little jealous because I still feel a little self-conscious dancing.

As we head into the holiday, I do hope Santa will sprinkle some magic dust on me to give me the courage to age as gracefully as this woman is doing. Wished. 

The Merry-Go-Round of Caregivers

merrygoroundAs soon as my Mom became bedridden, we brought in extra Personal Daily Assistants (PDAs). In the course of two weeks, we have had more than half of the caregivers assigned removed from the case due to other issues having nothing to do with my Mom’s care. It’s frustrating. I have called the agency several times to express my concern with all these new faces to a woman who has dementia.

Not only is my Mom trying to cope with fact that she can’t get out of bed and walk around the community, but we have additional new faces coming in from hospice. This is a lot of change for even me to handle. My Mom does not manage change well and each caregiver has a bit of a learning curve in working to find the right way to work with my Mom.

Thankfully, my brother came to town this past weekend. He’s a Human Resources executive, so I consider the timing a blessing. I ask him to meet with the caregivers and determine which ones we should keep. I also call in a new agency. We initially used the one care agency recommended by my Mom’s community. Since I was concerned about all this change, I called in a new agency to fill in for the weekend care. Before I can call to cancel this coming weekend with the old agency, they call to tell me the caregiver from last weekend can’t return. Really … what part of “no more change” got lost between my mouth and your ears?

This is hard enough and now we are faced with finding the right agency/caregivers to best help my Mom. I’m glad I opted for Plan B. It’s difficult to realize that even the best-intention-ed individuals and agencies fall short of what our loved ones deserve. Frustrated.   

What are you going to be doing in your 60s and 70s?

questionsignUSA Today just reported that life expectancy in the U.S. hits record high. Ladies who are 65 are expected to live to 81 and the gentlemen to 76 years. What are you going to do with your time?

I’m obsessed with ensuring that I continue to exercise, contribute to my community in meaningful ways and stay engaged socially. Many studies report that these are the three most important elements to aging well. The tough part is making sure that I have the wealth and health to afford these luxuries.

Have you begun to envision your future? A great book I recently found is Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams. There are many life stories interspersed and you quickly understand how many people find that the typical american dream of retirement doesn’t suit their abilities or their interests.

The time to start planning is best done in your 40s and 50s … when it feels far away. I hope you will hit your local library and check it out. Recommended. 

 

Five Wishes and Ethical Wills

fivewishesIn facing the loss of my Mom’s recognition of me, I’m left to wonder how I will manage through the final years of my life. I have felt a weird shift to my psyche now that the woman who I am the adult caregiver for, no longer knows me. She politely accepts my help and quizzically looks at me when I arrive with a case of Coke. I can tell she is wondering how I know she likes Coke when she has no recognition of me. Thankfully, she is gracious when I offer help but finds some of my requests a little too personal and politely rebuffs my suggestion. I am moving into another new phase of this hideous disease and learning to adapt.

I’ve been thinking about one of the gifts my parents gave me when they wrote a personal letter about the end of their life. They did it when they were in their fifties. Today, this falls under the description of an ethical will. There are many varieties and definitions behind this document. I consider what my parents did for me an incredible way to remind me of their values as well as encourage me if something were to happen to them. I was 20 and still in college, but was the last child at home over the summer and under their roof and care. During this time, my parents were traveling the globe. It was part of my father’s job. As the military spouse, my Mom was expected to make the trips with him. My parents wrote up their personal wishes should something happen to them on one of their trips. My Mom would always remind me where the hand-written letter was and that they left a blank signed check in the envelope.  It wasn’t the will or durable power of attorney, but a note that expressed their love and hopes for me.

One summer, my Mom sat me down with the envelope and went over the information with me. She really wanted me to know how to manage should something happen to them while I was still in college.

I’m amazed at how much the school of life has educated me. I watched both my parents deal with a parent who had dementia. I know they never expected that fate would befall them.  When it was time to look at their Durable Power of Attorney and Medical Directives, I realized what a gift those earlier conversations were. These documents don’t really cover the variety of decisions you will face as a caregiver. We have had to make many audible calls in the care of my parents from choosing to forgo chemotherapy to moving my Mom into a new community focused on memory care.

I was lucky to have had so much time with my parents to absorb many of their personal beliefs as an adult. One document that can help provide some guidance to family members for care decisions if you can’t make them yourself is called Five Wishes. It’s written to stand as a legal document, so if you have estate plans in place, please consult with your lawyer. If you don’t, it might be a good place to start. Recommended. 

 

Good Riddance to Ten Pounds of Grief

muffintopA year ago today, my Dad passed away. While he had Alzheimer’s, he died from a tumor on the back of his tongue. It was a harrowing experience, but I knew it was a blessing that the cancer seemed to take him so swiftly. I miss him, but I missed him when he was still here but the Alzheimer’s began to steal parts of him away. When he was here, I could visit him, chat and even get a hug.

A few months after his death, I was suddenly ten pounds heavier. I don’t gain weight easily and have a pretty solid tennis habit with regular weekly exercise. The swift change surprised me. I started to count calories and charted my exercise. Nothing changed. I started to think about the weight as my “grief fat.” I desperately wanted to have both the fat and grief gone.

It hung around my middle and plagued me, seeping out at inconvenient times, just like my grief.

Some girlfriends were chatting about a “metabolism” diet and I figured I would give it a try. I had moved into a period where I was just too busy to eat well, regularly. I would eat breakfast early, then lunch at 3 PM ruining dinner and then would graze before bed on dinner. Had I messed up my metabolism or was it just age sneaking up on me in inconvenient ways? We started the diet together and doing it with others definitely helped me. I started to pack meals and snacks and made sure I ate every 3 hours. I made it through the four-week plan and emerged ten pounds lighter. I’m pleased that even after the diet ended, I continued to lose a few more pounds.

I’m relieved to have lost my “grief fat” before the anniversary of my Dad’s death. As I hit the one-year marker, my grief lingers, but I’m quicker to recover as I reflect on his legacy and all the wonderful attributes of him that live on in me. Encouraged. 

Dementia Caregiving: The things you can’t “unsee”

glovesEarlier in the year, I was interviewed on Huffington Post for a story on “Parents Caring for Parents with Dementia.” One of the other guests, Kathy Ritchie However, I’m starting to dance around the circle of the fire.

I’ve been visiting my Mom and working to use all the resources available to keep Mom “kempt.”  I had been doing Mom’s laundry — she would not allow anyone else to take it. She could do the laundry if reminded and done in parallel, but we rarely found the machine free so I would bring home the clothes and sheets and wash them. When my brother was here he added in laundry service hoping that will help keep clean sheets on my Mom’s bed and clean clothes on her back.  These are things that Assisted Living communities offer as services, but the resident has to be willing to allow help. Even though we have asked for the assistance, at some point the staff just gives up. As my Mom’s disease progresses along with the mood medication — she’s been allowing others to help in small ways.  I was thinking it was working, but realized the personal aide we hired in the evenings has been doing most of the laundry loads.

I will try to guide my Mom’s through showers and I schedule Mom’s hair appointments. The hair dresser my Mom has seen for years will go get my Mom and bring her to the beauty shop. Some days however, my Mom just refuses to go and I only know this because I show up and her hair has not been done. Most of the things in place are beyond the support for “activities of daily living” the Assisted Living community supports. It’s reminding me that our decision to move Mom to a community dedicated to memory care is the right choice.

When I arrive today, my Mom doesn’t have on any socks. When we go to her apartment, I find clothes and sheets in little piles on the bedroom floor. The sheets have been there for over a week. I made the choice to leave the sheets in a pile to see what would happen if I didn’t collect and wash them. I found out nothing would happen. Congrats, right?

My Mom and I collect all her clothes and go to the laundry room in hopes that the washer is working today and not in use. Luckily, it’s free. I start to pull out the items I found and realize that a few of her pants are soiled to the level of being disposed of … but she insists I wash them.

My heart breaks. My Mom has been hiding these dirty clothes. She knows something is wrong and was very anxious when I started to look at the clothes. She asks me to just wash them. I ask her to check the apartment one last time so I could clean out the clothes before putting them in the wash on the sanitize setting.

My guilt on the decision to move Mom is diminishing day by day. On the surface, it seems she is being cared for, but the dirty, difficult work comes down to me to manage. I’m thankful my Mom has the means to afford the community. However, there are still large gaps in the care we all expect. I move through waves of resentment and relief that my Mom is in this community. I want to be a loving daughter, but when faced with the dirty work of the caregiving job, I grow angry. Not with my Mom, but the reality that most of the communities are not fulfilling the pledge they made to their residents. I wonder what happens to all those individuals without a trusted and caring loved one to continue to advocate and support them. Saddened. 

Facing the Ghosts of our Loved Ones with Dementia

DadMemoryTwice in the past week I have driven by a bakery that makes saltenas that I took my Dad to in the last month of his life. Right after I was told he had a tumor on his tongue, we had a variety of appointments to figure out what it was and how to treat it. One of the first appointments was a scan to identify the size of the tumor. As I was sitting at the office waiting for him to return with the medical assistant, I did a search on Yelp for a lunch place. The bakery had great reviews and I knew my Dad would enjoy something out of the routine.

I had hoped that the soft beef and potatoes would be easy for my Dad to eat, but he struggled through lunch. He continued to be his strong, stoic self and tried to enjoy the meal. I had no idea how sick he was but immediately recognized that it was just too painful for him to eat. I couldn’t believe I hadn’t recognized this earlier. Just like he hid his dementia, he did a good job of hiding the fact that he wasn’t really eating much anymore. I had noticed that he was losing weight and asked the doctors but they chalked it up to his disease state.

I was surprised the first time I drove by the bakery. I immediately recognized the area and the last time I’d been in this here. When I drove by it again today, tears started to form. I quickly remind myself that my Dad’s in a better place.

I miss his quiet calm and his good nature. I wonder if there will ever be a time when these memories don’t bring tears to my eyes. I’m not sure if that is a good thing. Missed. 

Background: Last year at 5:45 pm on the Friday of Labor Day weekend, the nurse from the medical team at my parent’s retirement community called to tell me they found a tumor on my Dad’s tongue and he needed to get to an oral surgeon ASAP. Over the next weeks we worked to get a diagnosis and determine treatment options. We never made it through the gauntlet to get him into treatment and he died in a hospice facility four weeks later. While I feel regret that I couldn’t have caught this earlier, I had been trying to find out why my Dad was slurring for months and took him to an external doctor for a second opinion. I know that in some ways this was a blessing and he didn’t have to continue to live while the Alzheimer’s robbed him of his self. I’m still a bit conflicted over these events. 

You want to live to be 100?

50thHSLadiesThis is the year of 50 for me and my high school buds. As I have witnessed my parents dementia’s, I pledged early on to lead a different life. I believe what Dr. Oz told me when I appeared on the show, and have found many other research studies confirming that your risk of dementia and Alzheimer’s is more closely tied to your lifestyle than your heredity.

Parade Magazine recently shared the 5 Surprising Tips on Staying Vital and they include:

1) Start prevention early since the process can begin 20 to 30 years before you have symptoms.

2) A few simple changes will help you fight a whole range of disease — smoking is forbidden and one hour of aerobic exercise daily is recommended. They also mention strength training and I was surprised when I recently learned that with every decade, you lose 10% of your muscle. The only way to combat it is to increase your training.

3) Helping your body helps your brain. The article states that “aerobic exercise is more important in enhancing brain function and memory than any other activity.”

4) Being social plays a huge role in preventing dementia. I have worked very hard on this but have found it immensely rewarding.

5) Moderate amounts of Alcohol are healthy. After I witnessed my Dad’s inability to stop drinking (he thought every drink was his second), I considered eliminating alcohol all-together. However, I have just worked on changing my habits instead of going def-con five.

In line with my effort to socialize, even with a 6 a.m. start looming, I met two friends out last night to visit. One was only in town for the night. We celebrated our 50th birthday together. As we were chatting, one commented that she wanted to live to be 100. Two of us groan. I have no desire to live a life without quality, so I’m not sure I’m willing to just say I want to live to be 100. The second groaner is watching her mother progress into Alzheimer’s and said she felt doomed. I told her we are in no way doomed and she even shared the many ways she was living a life very different from her mom.

May we all find the balance and ability to work to prevent the pesky inconveniences of aging. 50 is the new 30, right? Cherished. 

 

 

The financial costs of aging in place … are you sure?

retirementfundsAs I face the reality of the high costs of my Mom’s care, I’m working on creating my ideal aging story line. What I realized as I have watched my parents was that while most of us bought into the traditional concept of “retirement” with open schedules and the pursuit of hobbies, that model undermines healthy aging. We all want to live a life with purpose and that doesn’t stop in retirement. The idea of free days conflicts with staying engaged, accountable and productive. I decided I needed to change my life so that my pursuit of purpose didn’t feel like work. I found it when I launched MemoryBanc.

To help me plan better for the rest of my life, I’ve been reading up on as well as attended an event recently hosted by AARP on what to consider if you want to “age in place.” The real number is much more complex than just adding up the changes you may need to make your home more livable. As I recently mentioned, my Mom is living in a Continuing Care Retirement Community (CCRC) that involved a very large sum of money that was used as a down payment and considered “pre-payment” toward needed services. Even with that she’s paying a base fee of around $7,500 a month to be in Assisted Living. As I recently shared, some months have been closer to $12,500 as we have had to hire extra assistance since typically Assisted Living is not designed for individuals with cognitive loss.

If you want to stay in your home, you should consider how it might suit you should you develop mobility issues. However, my parents only temporarily faced that issue when my Dad broke his hip and needed a place to rehabilitate. Thankfully, one of the benefits of the CCRC agreement was that my Dad could move into their skilled nursing until he was able to manage on his own. My Dad was able to recuperate and as soon as he could manage stairs, they were back in their 3-level town home.

I believe there are other factors more important to consider than the cost of adapting your home for your aging lifestyle. In our case, both my parents developed memory issues (Vascular Dementia and Alzheimer’s). They were unable to recognize their inability to manage. Had they not been in a CCRC, my siblings and I would have had to petition the court for conservator and guardianship of my parents. If you know someone with dementia, you know that while they might not remember if they just ate dinner, they will know that their child has taken them to a public court proceeding and is charging that they are unable to manage their own affairs. None of us could have foreseen this scenario, but we were days from filing the petition when their CCRC acted and helped us manage a move into Assisted Living. Even with estate plans in place, we were faced with this difficult choice.

I haven’t gotten very far but do know that now, there are no perfect answers. What I hold true is that having your family members involved and having these discussions early are the key to making the most of the rest of your life.Studied. 

 

Related stories.

The Financial Costs of Aging in Place

Life Regrets? Seems many are toting some baggage!

50isNiftyUSA TODAY just shared a recent survey that showed life regrets can shape later years. As someone who has been caring for a loved one, I’m focused on not repeating history.

I have been reading the studies and have made several changes in my life in an effort to build a new and improved aging storyline. In 2012, I shared the 5 ways I planned on aging better than my parents which included cultivating meaningful friendships, documenting the little but important things, questioning and understanding my health state, finding work I enjoy and continuing to work as well as exercising and eating right.

I am a very competitive person and once I set my goals, I work to knock them down and make them part of my life. I have accomplished my goals and will add that after I appeared on Dr. Oz, I have incorporated more fish (or fish oil) into my diet.

While watching and caring for two parents with dementia would never be the path I would choose, it has changed me in many positive ways and helped me find work I enjoy and something I will continue to do for as long as I am physically and mentally able.

I was a little saddened that the study revealed that for older Americans:

  • 48 percent have the support of friends and family
  • 32 percent are happy about their living situation
  • 30 percent are well-prepared financially
  • 29 percent are in good health

Those all seem like very low percentages to me since you can easily flip them to say 52% percent don’t have the support of friends and family, 68% are unhappy with their living situation … you get the point.

Of the regrets, in the top 5, Americans included “keeping legal documents organized”. My parents had done the financial and estate planning and I had the legal documents. The legal tools don’t always work, and they don’t include all the information you need to assist someone if they need support.

As I celebrate my 50th birthday today, I’m proud to have launched MemoryBanc in order to help others organize and protect their important papers and documents. The recognition from AARP Foundation as an “older-adult focused innovation” fueled me to pursue my upcoming book with AARP. For any of you looking for a solution to collect and organize your personal papers, please take advantage of a 10 percent discount using coupon code “GRACE” to order the MemoryBanc Register. Celebrated.