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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. 

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It’s Nice To Be Liked

VIBAwardAugust was a doozy – so much for the dog days of summer in my house this year. Early in August, A Journey with Mom  and Ann Anhnemouse both nominated me for the Very Inspiring Blogger Award.  It took me a few days to even get to the blog to write or even respond to comments. Thank you both for the nomination.

Ann Anhnemouse shares the story of living with her partner and his dementia and A Journey with Mom shares the journey she is traveling with her mother.

It’s nice to be liked and I would like to repay the complement to several other bloggers. The rules are simple:

  • Thank and link to the amazing person who nominated you.
  • List the rules and display the award.
  • Share seven facts about yourself.
  • Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
  • Proudly display the award logo on your blog and follow the blogger who nominated you.

7 Facts about me include:

  1. I live right outside Washington, DC with my husband and two children. I was the only local child, but have 3 supportive siblings who have been engaged on this journey with me. It wasn’t easy, but we made a pact early on to not let this divide us and set up ground rules and roles that have served us well.
  2. As my parents dementia became more pronounced, my interest in tennis grew and I’ve become an amateur competitive tennis player.
  3. I’m crazy competitive, so my family is happy I finally have an outlet outside the household for my competitive zeal.
  4. I’m an introvert when you meet me, but a loyal friend for life once you know me.
  5. I’m a fanatic about process and logic and sometimes a little too stubborn.
  6. I believe in God and that my parents’ dementia lead me into the place I should fill here on earth.
  7. I’m passionate about using what I’ve learned to help others.

An additional fact is that I love paper books, so I have a hard time spending a lot of reading time at my computer. I’m not sure I can come up with 15 amazing blogs, but I have several that I value and I hope you will consider following:

  • Mom and Dad Care – This blog offers many news stories around dementia, care giving, and life choices that I would never see. He is like my own personal news curator. Thank you Butch.
  • Well This is What I Think – Stephen “Yolly” Yolland is an Australian/British businessman, marketing expert, advertising guru, writer, social and political thinker, speechmaker, media presenter, author and now: published poet and author of Well, This is What I Think. He sends me personal notes and tips on news stories, which I love, and he has a sarcastic bent that often tickles my funny bone on a wide variety of topics. The latest story he shared was on the possible link between a Vitamin D deficiency and Dementia. Thank you Yolly.
  • Top 10 of Anything and Everything – Somethings you just need silly and this blog delivers. The most recent to tickle my funny bone was the Top 10 Funny Images of Cat Flowers. No more needs to be said on that, right?  Thank you.
  • Portrait of a Morbid Optimist - Katryna Mary Brooke Ormiston shares her journey caring for her Dad. Thank you Katryna.
  • Going Gentle Into That Good Night – Sandra Ross provides practical, researched information as well as published helpful books for those caring for loved ones with dementia. Thank you Sandra.
  • A Swift Current – Poetry, Art and short snippets into her life and those around her with dementia. Thank you Hallie.

Several that have already gotten the award that I saw on their site but that are terrific include:

For those of you that comment, remark, encourage … thank you for the comments and Likes. They make the spent blogging about my journey not just therapeutic, but tremendously rewarding. Let’s keep talking. Encouraged. 

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Hey, I know you.

pillcupI get asked several times a week, and even sometimes several times a day, how my Mom is doing. Caring for my parents is part of my life story.

I am struggling with coming up with a positive answer when I am asked. For my longtime readers, you know that I work to find the positive and usually a laugh in the midst of this phase of my life. It’s getting harder. I wonder if it’s because I’m more attuned to the struggles of dementia. Both for the person with the disease and those around them. Most people just don’t understand the disease and admittedly, it took me a while to figure out how to engage, manage, survive and navigate my visits and care-giving tactics.

My Mom is fading away. Many days now I find her in the activity room. I’m glad the community created a program to engage my Mom and she enjoys it in the moment. I recently noticed that she doesn’t use my name when I arrive but looks at me, smiles and says “Hey, I know you.” I wonder if she remembers my name.

I enjoy our visits. I don’t have to think how to manage around her paranoia. She follows my lead and often asks what to do. On my last trip we cleaned out some drawers and I was able to return about 2,000 trash bags to the community that she had been hoarding. When I handed over the bag, the community staffer smiled at me and asked if I was going to try to get the pill cups on my next visit. My Mom is enamored with those small cups. For another day. Relished. 

POST SCRIPT

In reviewing my blog, I found I had written this same header back in February, 2012. I also did a version on a story my brother shared with me when he visited in May, 2012.  It reminds me how long this has been going on as well as how quickly I have forgotten so much that has transpired before this point. Survived.

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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. 

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Five Birthday Ideas for Someone with Dementia

Mom83My Mom just turned 83. I realize that I have looked forward to celebrating birthdays and anniversaries with my parents. It makes things feel more normal than they are. I am not visiting to make sure they were doing well or just pick up bills, I am able to visit to celebrate a milestone. Something we would have done before they had dementia.

Last year for my Mom’s birthday, I gave her 82 small gifts. I went to Micheals and purchased wedding favor boxes in a variety of colors and filled them with a variety of chocolate treats.  There were a few bigger presents in the basket I gave her. Each one was numbered and she went through all of them on her birthday, one by one. She was positively overwhelmed with all the small boxes and enjoyed treats for the next month. She won’t throw away the boxes, she kept every one of them.

The year before, I cooked my Mom her favorite brunch and had them over to my house.

When I asked my Mom if there was something she wanted to do this year, she said that she would like to go to the dime store and shop. There is a dollar store down the street from my Mom’s retirement community and for years, my parents would arrive at our home with plastic birds, squirt guns and games that they picked up from the dollar store.

This year, when we arrive, my Mom is asleep on her bed. We decorated her room while she slept and when she awoke was very surprised to learn it was her birthday. She ate quite a few of the chocolate covered strawberries as well as wanted a piece of birthday cake. We took her to the dollar store and purchased a larger vase for roses as well as a few puzzle books and some small craft projects. Halfway through the store, she stopped talking and just said she would follow me. The store got overwhelming for her so we checked out.

bdaymanis

Three generations got a manicure.

During the trip, my Mom noticed she had a broken nail. As I just shared, I’m having trouble keeping Mom kempt, and her nails are very long and in need a trim. I ask her if she’d like to go get a manicure. At first she says no, but when I tell her that I will help with her nails when we get back, she decides a “professional” manicure might be better. The three of us got our nails done together and I could return her home a little better off than I found her. I will add that to the list of birthday activities you can do with a loved one who has dementia. Celebrated. 

 

Five Birthday Activities / Ideas for Someone with Dementia

  1. Bring their favored home-made meal or serve them at your home.
  2. Create a basket with numbered boxes filled with candy or other treats that represents their age.
  3. Take them on a car trip / shopping trip to a beloved retail outlet.
  4. Ladies: Go get a manicure / pedicure or shampoo and set or blow out together.
  5. Men: Go get a manicure / pedicure or shave together.

Consider getting flowers and / or balloons that can remain in their rooms as a reminder of their recent celebration.

 

 

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Trying to keep Mom kempt

hairrollersMom is now sleeping in her clothes. When I’ve gotten her into the shower, I realize how hard it is for her to dress and undress. I understand that she wants to manage, but in this area, she won’t allow me (or anyone else ) to help most days.

I wonder if the days that she won’t allow me to help are days she doesn’t really recognize me anymore.

I scheduled a hair appointment but when they tried to get her to her appointment she refused to go. Maybe it would have been more successful if I was there. I can’t always be there when she needs to dress, shower and get her hair done. I hoped it would be easier for her community to help, but now it just feels like another reminder that Assisted Living isn’t the right place for someone with memory issues.

I return the next day and walk with my Mom to the beauty parlor. It’s just the next building over through one connected hallway,  and it takes us almost fifteen minutes to walk there. The lady who has been doing my Mom’s hair every other Tuesday for several years greets us and she says she can get her in this afternoon. She will come get my Mom if she doesn’t show up. I’m hoping that my Mom will go now that we have her scheduled with her regular hair dresser. I’m thankful that she is willing to go pick my Mom up from her apartment and already knows where she lives (having had to do this before). I write-up an appointment card and try to get my Mom to stick it in her pocket. She wants to hold it to help her remember.

When we get back to her apartment, she asks me what she’s doing today. I run through the activities. When we get to the hair appointment, she asks if we can walk there so she knows how to get to her appointment. When I tell her we just did that, she responds, “I hate this, I should know that we just did that.”

“I know Mom. It’s okay, you have lots of friends around you who will make sure you get to your appointment today.”

I have been working harder to coordinate with the floor staff. But I know my Mom will just sometimes refuse to shower, change clothes, get her hair done … it takes a village to age them, as well as raise them. Reminded.

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A BILLION Passcodes Stolen – What’s your plan?

passwordNBC News just reported that a Russian crime ring stole over a billion passcodes. Our lives just got one notch more complicated.

Most adults average 28 online accounts. My last count was 87. That is A LOT of usernames, passcodes, PINs and information to remember. I manage several accounts for my Mom, some for my children (school, dance, soccer and track registrations), most of our household accounts and then all of the accounts for MemoryBanc.

We fail to recognize how many accounts we keep track of in our heads, on our mobile phones and even under our keyboards, I quickly realized how much information surrounds a household when I stepped in to help my parents. I started by documenting medical information (prescriptions, doses, doctors, history, follow-ups) so I could be a good health care advocate. Then I needed to pay bills and manage their finances, then came household services and ultimately online accounts. The binder I created to keep track of all of their information launched MemoryBanc. I quickly moved our own household to the print, then the digital edition of the MemoryBanc Register. Given I have more than 87 online accounts — I have made sure to document them all.

The NBC News story provides users with many options on how to create unique but varying passcodes as well as suggestions for online password storage sites. Most passcode managers have encrypted data and 2-factor authentication to prevent hacking — but nothing is 100% secure (just look at the issues the US has had with data breaches) and those protections also leave your loved ones without access should they need to act on your behalf. Make sure to have a solution that allows you to print out a copy of your passcodes. Should the company that owns your password manager have a critical failure … you should have a plan B.

If you don’t have have a list, I hope you will take this opportunity to document your accounts, I have included a simple excel spreadsheet that contains all the information you should be documenting. You can download it and document your usernames, passcodes, PINs and security codes (don’t save it on your computer please).

If you are worried about sharing this information, consider how helpful it would be to a loved one should you ever be unable to act on your own behalf. Pleaded.

icon-bonus

 

 

My gift to you is this free worksheet that will collect and organize your usernames and passcodes.

 

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