Alzheimer’s – Page 6 – Barefoot Lily Lady

Measuring Time

This is my mother’s watch.

Momma undoubtedly bought several watches during her lengthy nursing career. But, as she often recounted the story of her watch, she had been wearing this very watch since she graduated from nursing school in 1955. You see, a watch with a sweep second hand was essential in my mother’s era of nursing. It kept you and your doctor on schedule and kept you accountable for the time you spent on breaks. When updating a patient’s medical chart (no computers back then), it provided the time for documentation purposes. Its sweep second hand was the essential tool momma used day in and day out to measure a patient’s heart rate in 15-second increments of time.

Holding my mom’s watch in my hands today, I recalled how meaningful it was to her, even after my mom could no longer tell time (which I wrote about here). A mind clouded by Alzheimer’s loses the ability to measure the passage of time or interpret the face of a watch somewhere in the middle stages of the disease’s progressive march through the brain.

Even after my mother could no longer tell time, I invested a good bit of time in finding my mom’s treasured watch when the paranoia of dementia would cause her to occasionally hide it for safekeeping. I had the band resized when she slimmed down and it spun on her wrist. I even took it in for repairs once and replaced the battery on several occasions. The natural motions of her body would wind the self-winding watch (another clue that it was NOT from 1955), but Momma would wind it anyway because that was what she remembered doing in days gone by. Over time, this damaged the watch beyond repair, but she still loved to wear it.

When my mom moved into assisted living memory care and I saw how she would distribute her things all over the building (and borrow the belongings of others without consent), I decided to take her watch home with me for safekeeping. I hated to take something that was hers, but the story of the watch had also become something I treasured. Thankfully, it didn’t seem to matter much to mom — especially since her friend and BeeHive neighbor Roy didn’t seem to mind if mom (ahem!) borrowed his watch from time to time.

One day I noticed my mom sidle up her wheelchair to another lady friend at BeeHive. She seemed concerned that her friend was slumped in her wheelchair. Here’s the precious thing I was honored to witness with my own eyes. Momma reached over and gently placed two fingers on her sleepy friend’s wrist, instinctively finding that arterial sweet spot nestled between the thumb and tendon. The nurse in my sweet mother looked at her watchless wrist as she felt her friend’s pulse for about 15 seconds, then smiled with satisfaction and patted her sleeping friend’s hand as she said, “You’re going to be okay.”

5 Thoughtful Gift Ideas for Someone with Alzheimer’s

Last month we celebrated my grandson George’s birthday. I cannot believe my youngest grandchild is eight years old already. Like many 8-year-old boys, he’s into all things Legos and Minecraft. This year he asked me to make his cake and surprised me when he went a little retro in his decorating request. Pac-Man!

When it comes to birthdays, I am so very thankful that my daughter helps her kids create Amazon gift lists. They make shopping for my loved ones so much easier. A “click” or two and the shopping is done and I can be reasonably sure that I am purchasing something my grandchild really wants and will appreciate.

But shopping for a loved one with Alzheimer’s (or any type of short-term memory loss) can be a little tricky. What they once enjoyed may now hold no meaning at all, or may actually cause agitation. My mom had Alzheimer’s. It took a little bit of experimentation to find out what she liked, but I learned things along the way and hope my experience will be helpful to someone else. Here are a few of the gift ideas my mom enjoyed:

Something cuddly soft and warm (and very washable) – like a new blanket, a pretty sweater, or a beautiful shawl. In my experience with my momma, being cold was always a problem. I could be fanning my sweaty self and my sweet momma would be in the same room looking for something to wrap herself in because she was cold. We bought her several plush bed jackets and soft sweaters with pockets. Momma was not alone, as being perpetually cold was a problem with many of her friends in her assisted living memory care. I would suggest something in a favorite color, but nothing with a busy pattern; I learned the hard way that patterns can turn into terrifying objects when a loved one is in a stage where hallucinations and delusions are common (you can read about one such experience here).

This one is handmade and belonged to her assisted living community, but mom loved it.

The quilt hanging on the railing in the photo below was a gift for my brother sent by his friend Cheri and the church quilting group to which she belonged. It was such a nice gift and sweet gesture of love and care. He may not remember who gave it to him, but he will appreciate its warmth in the coming winter months.

My brother, enjoying a cup of coffee and a little fresh air on his nursing facility’s front porch.

Coffee (or another favorite beverage). Mom’s eyes lit up when I brought her sweet tea or a Diet Coke. My brother always enjoys a good cup of coffee (with lots of half & half) whenever I visit him.

This size photo book was perfect for my mom to tuck in her purse to enjoy discovering later.

A photo book. Photo books are a perfect icebreaker when visiting a loved one who no longer remembers your name or connection. Just paging through a photo book takes away some of the awkwardness of memory loss, giving you something to enjoy together. In the photo above, my granddaughter Violet is spending time with her great-grandma going through a photo book that features Violet’s family. In addition to your corner drugstore, there are any number of on-line sites where photo books can be created.

A favorite treat – as Alzheimer’s progressed, mom developed quite a sweet tooth and loved it when I brought a cookie or a donut. Please don’t be too worried about nutrition; it’s all about your loved ones favorite things and bringing them joy at this stage in life. I would occasionally put a cookie in a ziplock bag, then tuck it in her purse for her to discover later. Your loved one may not realize it is from you, but trust me when I say your surprise will bring a bright spot to their day.

A birdhouse. Many residents have birdfeeders, which are quite enjoyable; however, they require someone willing to keep them clean and filled with seed, which isn’t always practical. Birdhouses are quite lovely to look at and don’t require a lot of upkeep. Seeing bird families coming and going is sure to bring a smile.

What are your gift suggestions? Please share them in the comments.

If I Could Have a Caregiver Do-Over

“What is your life? For you are a mist that appears for a little time and then vanishes.”
James 4:14b (ESV)

God gave me the honor and privilege of taking care of my mother in the years that her mind waged war with Alzheimer’s. I am thankful that her brave battle with memory loss and frailty of body is over–the victory won as her affliction gave way to the ultimate healing when Jesus took her home to heaven.

My regrets are few, but if I could have a do-over of one caregiving thing, I think I would listen more carefully to the stories she told about her childhood. In my do-over, I would sit next to her more often looking through old photos, paying attention to the memories she shared. I would take care to write down all of the memories the photos coaxed from the places in her mind where the old stories still lingered.

With the help of my daughter, I did create a memory album for her, but it would have been nice had I started on the album sooner, capturing those stories for her to read and re-read as her memories slowly faded away.

While I cannot roll back the hands of time, I do find joy in knowing she is free from the bondage of memory loss and frailty of body. I find hope in knowing that those precious moments we did share are only a glimmer of the immeasurable time we will share together in eternity.

This post was written for Five Minute Friday. One word. Five minutes to write about it. Today’s word: COULD

Rewind: Swimming Faces

Another post in my “Rewind” series. This post originally appeared on October 23, 2016 as a Facebook note in my pre-blogging days. As I journeyed alongside mom with her diagnosis of Alzheimer’s, I learned through her experience many things about the affect this disease had on her world. As my mother’s caregiver, I have leaned heavily on the experiences of those who have traveled this road ahead of me. In sharing my experience, it is my hope and prayer that someone else will be helped and encouraged.

Even though Momma lives in a little one-bedroom apartment, many days she has a hard time remembering where her bedroom is located. A few minutes ago, I overheard her talking to herself saying, “Now, where is my bed?” Groaning with each step taken toward bed, I could hear my sweet mother then exclaim as she entered her room, “Oh, there you are! I can never remember where you are.”
I’ve been staying overnight at Mom’s house since September 11th. That was the night when mom had a severe separation from reality, scary hallucinations, and I had the realization that it was no longer safe or wise to leave her in her apartment alone. Sadly, she was so afraid to stay in her room. Every time I would get comfy and start drifting off to sleep on her couch, she’d come in the living room, flip on the light, then stand in front of the couch asking me if I was awake. I would get up, gently guide her back to the bedroom, do the room search (looking for the intruders she was so sure were there) and I would try to reassure her that everything was okay.
I noticed that even during naps taken during daylight, mom wouldn’t sleep under her quilt. I would often find it pushed to the corner of the bed or on the floor. On the third night of no sleep, Mom told me that there were “faces swimming” on her bedspread. She was clearly disturbed by its presence. So, I replaced the bedspread with an extra blanket and mom finally settled down enough to sleep for a few hours.
The next day, a very kind friend from church came to sit with mom so I could take my brother to a medical appointment. When I returned later that day, I related the story about the bedspread to her. She took one look at it and said, “Of course there are faces! Look here! See the eyes?” In all the years that the paisley bedspread had been covering my parents’ bed, I had never noticed that.
As I thought about my sweet friend’s observation, I recalled reading in several articles related to caring for individuals with Alzheimer’s that busy fabrics give some patients great anxiety and that it is helpful to use solid colors in clothing and decor choices. Even busy wallpaper patterns can take on frightening proportions that terrify the confused mind. With that information in mind, that very day, I stopped at my local Target and purchased a plain, simple white bedspread for her.
No more swimming faces – and every so often, I catch a heartwarming glimpse of mom gently fingering her new bedspread, running her hands across the soft fabric as she drifts off to a much more peaceful sleep.
First posted as a Facebook “Note” on SUNDAY, OCTOBER 23, 2016

15 Little Things I Love

Dirty feet – because it means I have been in my garden

Daylilies – each blossom a unique work of art

The faithful love of a husband – a big thing, really

Hugs from a grandchild – there is nothing quite like a child’s embrace

Birdhouses – caring for God’s creation and a blessed time of crafting with my grandkids

Birthday Cakes – a sweet celebration of another year of life and growth

Birthday cake decorating

My Bible – for the life change that happens with time spent within its pages

Rain – for watering the earth and for leaving glittering jewels in the garden

Zinnias – God’s colorful stage for the flutter of butterfly dances

Green – for the way its various shades and hues frame all of the other colors of God’s creation.

Hydrangeas – for the serene beauty they bring to my garden

Peanut butter silk pie (from Perkins) – a whole day’s worth of calories rolled into once slice of my favorite date night dessert.

Colored pencils – because they remind me of my mother

My painted garden chairs – because they make me think about the love of the artistic grandgirls who painted them

Old photos – for the stories they tell

Palliative Care Praises

My friend and I talked recently about palliative care and how it differed from hospice care. I recalled writing a little blog post about this subject, so decided to reblog it today. I hope that it helps my friend and anyone else who is approaching this stage in the care of their loved one. I praise God for leading me to Agrace and for the wonderful palliative and (later) hospice care my dear mom received.

Barefoot Lily Lady

As this mid-stage of Alzheimer’s drags on, Mom is sleeping quite a bit more, not only at night (which I appreciate), but during the day as well – sometimes skippinga meal in lieu of sleep. Unfortunately, her nighttime sleep doesn’t appear to be very restful, as she gets in and out of bed various times throughout the night – sometimes to use the restroom, other times to explore the contents of her purse or her dresser drawer, or watch the real or imaginary happenings going on inside our house or outside of her window.

We have also noticed she has been less content during her awake hours and is more easily agitated. She paces back and forth between her bed and her chair at the kitchen table, never quite settled in either place; never quite sure if she’s going to bed or getting up.

Long ago, when my mother was…

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Dementia-friendly Activities

Helping a loved one with dementia feel content is sometimes a difficult task. I’m by no means an expert on the subject, but thought I’d share a few photos depicting several ideas that we tried.

There came a time when caring for my sweet momma in our home was no longer best – for her or for me. God knew what we both needed and provided a wonderful place for her to live a 10-minute drive from our home. Momma lived the last year of her life here on earth as a resident at BeeHive Homes of Oregon – an amazing assisted living memory care community. The amazing staff did so much to help her be as content and happy as possible. Let me share just a few photos of those wonderful activities and opportunities she was privileged to take part in.

Momma loved her snacks! BeeHive always had something she loved.

Though her deafness was sometimes a barrier to fully enjoying the music, Momma and the other residents had many rich opportunities to hear and participate in a variety of musical forms.

This lovely harpist was a regular and well-loved visitor to BeeHive. I do believe I saw “rapture” on the faces of some of the residents as they listened to her play – some of them singing along.

BeeHive is blessed with visits from many musical groups and choirs

Momma obviously enjoyed the accordian – it was certainly easy for her to hear. Just look at the joy on her face!

Several dance troupes brought their lively performances to BeeHive. What a sweet treat!

I’m thankful for the churches who faithfully held services for the residents. This photo is of mom and her friend Roy listening to one of the pastors.

So many creative people and groups shared their time with the residents helping them make a variety of lovely crafts.

Momma gets a little crafting help and encouragement from a sweet volunteer.

*The intergenerational activities were SO meaningful.* The local school sent students over every week to read to the residents. I just love seeing this photo of momma and her armful of babies listening to this young boy read aloud.

Please, let me take just a moment to speak to those of you who are facing the decision of whether or not you should place your loved one in a care facility. Looking back on my caregiving experience, I am so very glad that I spent time with my momma helping her in any way that I could during the last few years of her life. When the time came for her to move out of my home, it was a very difficult decision. My body was telling me it was time. My emotions were telling me it was time. My husband was telling me it was time. Yet, I felt a little like I was giving up. However, I now realize that if I had insisted upon keeping my momma home with me until the very end, she would have missed out on so many wonderful opportunities and friendships.

Momma and Carol didn’t know one another’s names, but they were nonetheless sweet friends. I’m so glad they were able to be there for each other.

May God bless you who are caring for a loved one or friend with memory challenges. May you be blessed with creativity for your very long caregiving days, strength and patience for the long and sleepless nights, and wisdom and grace for each decision you make on your journey of love and care.

Legal Documents EVERYONE Should Have

Back in 2014, making sure that mom had all her legal paperwork ducks in a row was one of the smartest investments we made in both time and money in preparation for the Alzheimer’s road ahead of us. Thankfully, mom and dad had a good foundation, having already met with their lawyer to get their house in order for the future as soon as my dad began having health struggles.

They had written their wills and had also established two essential (in my opinion) legal instruments:

Power of Attorney for finances and property
Healthcare Power of Attorney (state specific form)

If you do not have both power of attorney documents and your loved one is determined to no longer have the capacity to make their own decisions, “Guardianship of the Estate and Person” may be necessary. You will likely have to petition the Court to appoint a guardian to make the decisions not covered by the missing POA document. Knowing in advance who will be entrusted with these responsibilities is important, so be sure you have both.

Make your Power of Attorney for Finances and Property effective now so your agent can quickly handle financial matters. Your agent will need to sign a “Duties and Liabilities” form, but the agent can start helping you immediately. My husband was my mom’s POA for finances and, because that “effective now” box was checked, he could help my mom with her banking, put all of her bills on autopay (so she didn’t have to deal with the mail), take care of matters related to her investment accounts, talk to her banker, pension fund administrator, and insurance companies. He did not have to wait until she was declared incompetent.

In addition to the above essential documents, we found the following to be beneficial as well:

Make sure “special powers” are included in your POA document. In my state of Wisconsin, the standard form available for download does not include provisions for gifting or grant powers to your agent to amend trusts or beneficiary forms. Your attorney can help you create a “Special Durable Power of Attorney” with trust provisions. These powers can be very helpful when a person is trying to protect assets from long term care costs.
Consider creating a “special needs trust” as a place to shelter or reserve enough cash to be able to take care of things not covered by Medicaid. In our state it is called WISPACT. My brother lives in a nursing home. I am his POA for healthcare and my husband serves as his POA for finances. My brother had been unemployed for several years and had no savings and no income (too young for Medicare), and would quickly spend down a modest retirement account he had from a previous employer. With the “special powers,” Wayne established a WISPACT fund for him to set aside some of my brother’s retirement money prior to Medicaid spend-down. This is NOT a way to cheat the nursing home. For us, having this fund means we don’t have to dip deep into our own pockets to pay for things my brother needs that are not covered by Medicaid. For example, if my brother needs new blue jeans or a dental appointment, we go ahead and take care of that need, then submit either an invoice (e.g. for the car repairs) or receipts (e.g. for blue jeans) with a “request for distribution” to WISPACT. The expense will then be reviewed by the trust manager to ensure that the expense meets public benefit rules, and the bill is taken care of or we are reimbursed. The trust is irrevocable, meaning that no funds will be returned; when my brother dies, any funds left in that account go to the state.
Prepay funeral expenses – Mom and dad had already chosen and paid for their cemetery plot and, thankfully, she had shown me where the deed was located earlier in her disease process. My husband and I took care of pre-paying mom’s remaining funeral expenses based upon both her written notes as to her desires and a conversation we had with her in an earlier stage of Alzheimer’s. We have done similarly for my brother. He’s only 61, so could live much longer. Pre-paying his final expenses locks in today’s pricing.
A Caregiver Agreement – While mom was still able to make her own decisions, she expressed concern knowing that I may someday have to quit my job to take care of her. When we sat down with mom’s attorney, who specialized in elder law, he advised that we draw up a caregiver agreement – a legal contract which defined the dollar amount and the number of hours she would pay me in caring for her. Truth is, it became a 24/7 job, but our agreement made in advance made it possible for me to be paid as her family caregiver. Momma never got to the point of Medicaid spend down. If she had, her finances would have undergone the “5-year look back”, and having this legal agreement would help protect me financially.
Advanced Directive – None of us knows when we will take our last breath. How thankful I am that mom and I had that difficult conversation about end of life. And I am doubly thankful that she took care of creating an Advanced Directive. This helped me as her POA for healthcare (and caregiving daughter) make vital end of life care decisions on my mom’s behalf when she was no longer able to make those decisions herself.

I gave this post the title “Documents EVERYONE Should Have,” but should probably mention a bit of a caveat. An individual with Alzheimer’s will hide things that are important…including paperwork. In fact, they may throw them away. When my mom was in the mid stages of the disease, I decided it was time that I took her important papers home with me for safe-keeping (including that cemetery deed I mentioned above). However, the paperwork was still extremely important to my mom. I decided to make good photo copies of her originals and create a special binder of all that information for her. She absolutely loved it. She would spend hours paging through it, double-checking things, and would write her questions and thoughts on the margins. Knowing I had the originals, it was all good.

How Did I Get Here?

A memory from two years ago …

Barefoot Lily Lady

There are many times when I walk into my mom’s room and she has this befuddled look on her face. I watch as her eyes wander slowly around the room, studying each piece of furniture, the window, and the doorways. Her eyes will land on pictures of once familiar people and a blankness has slipped over her eyes like a mask – no light of recognition.

In these moments Mom will often ask,

“How did I get here?”

I no longer answer by explaining, “Well, about two years ago I moved you from your home in Milwaukee so that you could live with me and I could help take care of you.” I don’t tell her she has Alzheimer’s. Unless she specifically asks, we don’t dwell on the fact that she can no longer handle money, make decisions, cook, drive, or take care of herself.

That’s too much information.

The…

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Butterfly Kisses

The final week I spent with Momma is now a blur; the days and nights run together in my head. What I do clearly remember is an overwhelming feeling of gratefulness. Each day and night that I spent with her illuminated the many reasons I had to be so grateful; many of those “reasons” wore scrubs and a nametag. It did not matter if they were a nurse, a personal care or nursing assistant, or owner of BeeHive, it was obvious that each had a role in providing care, and they all loved my Momma.

Keeping vigil at my mom’s bedside during that final week, I had the privilege of watching each one of mom’s amazing caregivers at BeeHive, together with her hospice team, do their best to make this last part of my sweet mom’s earthly journey as comfortable and pain-free as possible. Every few hours they would check to see if she needed to be changed and reposition her to prevent bed sores and to ease her struggle with terminal respiratory secretions. Medications were administered to keep pain under control and help dry up some of those bothersome respiratory secretions. If there was any sign of pain or discomfort, they were on it, adjusting her medications or finding that “sweet spot” in positioning her. Since Momma couldn’t swallow to drink anymore, they used swabs to soothe her parched lips and keep her mouth hydrated and clean.

Even though BeeHive is a busy place, as the caregivers worked with her, they never seemed to be in a rush. Gentleness was in their touch whenever they moved her. Each person involved in mom’s care spoke to her just as if she could hear and respond. As each one left the room after performing daily cares, they left behind a kind word of care and endearment.

It could have been my imagination, but as her body weakened and she slipped into a non-responsive state, I sometimes felt as though she was peeking through almost closed eyes, searching to see if I was there. Otherwise, in all of this, momma gave no real indication that she was aware of anyone being in the room with her. I honestly didn’t know if she could hear me, but I talked to her anyway. Even though Momma was quite hard of hearing, I oftentimes placed my phone on her pillow next to her ear and played her favorite hymns while I sang along with tears playing in the corners of my eyes. When I sensed that she was agitated, I stroked her forehead to soothe and quiet her, tracing her forehead and nose with soft touches, much as she did for me when I was a child. When I could do nothing else, I just held her hand.

On Saturday night, I noticed Momma making kissing sounds. Her eyes were closed, but her head was raised off her pillow and she was definitely kissing the air. Her kisses were insistent, so I thought perhaps she wanted to give her Dolly a kiss. Momma loved that Dolly, taking care of her (and a host of other dolls) as if they were her children. I put Dolly’s cheek to Momma’s lips and Momma gave her little butterfly kisses. I thought that was so sweet, so tucked Dolly back in with Momma.

But Momma kept making kisses. So I put my cheek to Momma’s lips to receive her kisses. Momma kissed my cheek a few times and I kissed hers. Momma stopped kissing and relaxed her head on the pillow.

It was then that I knew those butterfly kisses were for me. My sweet Momma knew I was there and she was trying to give me a goodbye kiss. Perhaps Momma knew that heaven was drawing near and that she would be with Jesus in the morning.