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.
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.
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.
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.
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.
The philosopher who said that work well done never needs doing over never tended a garden. - Ray D. Everson
I’m away from home for a few days and envisioning weeds taking over my garden as I type and Japanese beetles treating my beautiful flowers as a sumptuous buffet.
But time with my family trumps gardening. The garden can wait.
Right now my garden is awash in a rainbow of color. The peak of daylily season in my garden will inevitably begin to wane in the next week or two.
A supporting actress has made its dramatic entrance in this week’s garden show: the beautiful balloon flower. The photo below captures several stages of its fascinating growth. First is the tight little pentagon-shaped bud. Then, almost overnight it seems to ‘inflate’ looking much like a balloon. As its petals unfurl, the blue-violet color begins to emerge and deepen. Then comes what I call the ‘fairy ballgown stage’ when the petals flare slightly open. Once fully open, the flower transforms into a sweetly upturned bell.
Rose mallow (hibiscus) ‘Tie Dye’ is loaded with buds this year and should provide a punch of lovely pink until autumn. Though planted by the house, these beauties garner attention from passersby. It’s a bit of a challenge keeping Japanese beetles from munching on them, but I am keeping ahead of them so far.
Last week I mentioned my problem with powdery mildew and asked for your advice. One reader suggested washing with baking soda and water, so I mixed up this concoction and gave it a whirl on my favorite phlox, ‘Glamour Girl.’ Mix together: 1 Tbsp Baking Powder ½ tsp Liquid Soap (I used organic Seventh Generation) 1 Tbsp vegetable oil 1 Gallon Water
Here’s a before and after – pretty dramatic cleanup, I would say. We’ll see if it works. I will give an update in a future post.
Well, that’s my little garden tour for this Saturday. If you’d like to tour a few more gardens, check out Six on Saturday hosted by The Propagator who provides the inspiration and forum for a weekly, six photos at a time show ‘n tell. Just click on the Propagator’s site and give his weekly post a read; then scroll on down to the comments section where you’ll find links to a variety of gardens to explore. Have fun!
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 an 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 and her finances would have undergone the “5-year look back”, 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.
It’s going to be downright toasty today with temps expected to reach 90 degrees – factor in the humidity and we will have a “feels like” temperature of 102. Definitely not my idea of ideal gardening weather. I think it will be a wonderful day to chill out indoors and catch up on laundry and a bit of housework, finish reading a great book (that’s due to be returned to the library), work on a sewing project and (of course) write about gardening.
It’s a perfect day to post my blogging contribution to Six on Saturday: six things in the garden on a Saturday. The “six” can be anything – a flower, a success or failure, a weed you’re hoping the worldwide community of gardeners recognizes (and knows what to do to get rid of it), a project you’re working on, a gardening book you recommend, anything at all. Join in!
My six this week will focus a bit on daylilies (again), as that’s what’s in full swing in my garden. I thought I’d show off a few of the beautiful oranges and reds.
My garden is a riot of color, but does tend to lean toward yellows, pinks and purples. I have added oranges and reds over the past few seasons to heat things up a bit. Here’s a little collage of some of my favorites this week.
I never turn down an offer of help in my garden. This week’s help was exceptionally great. First, my wonderful hubby devised a way to feature a birdhouse my grandson painted for our garden last week. Charlie seems to have inherited the artsy gene, evidenced by the sweet autumnal birch trees he chose to paint on all four sides. Hubby sunk a post near our crabapple tree, added a sturdy scrolly hanger, then later topped the post with a solar lit cap (sorry, I don’t have a photo with the light on it). Perfect!
Over the past several summers, my grandgirls have helped me paint discarded chairs to serve as artsy flower rings and decor in my flowerbeds. My friend Anne Marie recently gifted me with two old chairs which once belonged to her grandmother. Yesterday, my granddaughter Noelle spent time helping me prep one of those chairs for painting. We have a color picked out (and it’s not purple this time!), but you’ll have to stay tuned to see what it is.
I didn’t get a photo of Noelle’s daddy (our son Matt) helping me with an especially weedy flowerbed. He pulled in an hour or two what would have taken me several days to accomplish. I am most grateful! One thing he uncovered was this bit of Phlox paniculata ‘Glamour Girl’ which apparently needed more air space and less moisture, judging by its heavy coating of mildew. So, I need a bit of advice from you, my gardening friends. Is there some way I can salvage this otherwise beautiful plant? (please offer your advice in the comments section below)
I have a few red daylilies strutting their stuff this week. For the past few summers, I have been dividing some of my red Stella D’Oro daylilies and planting them here and there in the borders of my garden. Next year I plan to add some purple Stellas. I love the Stellas because they are generally loaded with blooms from early summer through killing frost. Other than cutting back the spent scapes to encourage more scapes and blossoms, it’s such an easy plant with lots of pluses.
I have three other red daylilies that I especially like. One is a very deep burgundy red, teetering on black in certain lighting. The other two are more of a cardinal red. I have been dividing and transplanting bits of these plants for a few years now and am happy with the splashes of red in the riotous palette of color that comprises my mid-summer garden.
Well, that my six (okay, I know I cheated by adding the collages). One highlight of my Saturdays is joining up with blogging gardeners from all around the world for a virtual garden tour. This group called Six on Saturday is hosted by The Propagator, who provides the inspiration and forum for a weekly, six photos at a time show ‘n tell. If you’d like to take a peek at the gardens too, just click on the Propagator’s site and give his weekly post a read, then scroll on down to the comments section where you’ll find loads of links to explore.
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.
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.
I’m on the other side of caregiving now and am looking back on that experience and wanting to share a few of the most helpful purchases my husband and I made to assist us as we provided care for my mother.
Mattress Protection and plenty of bedding – nearly every person who struggles with memory loss will come to the point where incontinence is a fact of life. One of the best purchases I made was this mattress cover. We had a hospital bed, so purchased a Twin XL. This particular cover actually was waterproof and saved our mattress from certain ruin over and over again. It completely covered the mattress — trust me, this is important. I only needed to wipe it down with a disinfectant spray, but it also washed up nicely in the washing machine on warm. I would give it a tumble drying on air-dry with several dry towels romping around in the dryer with it. We had purchased a second-hand hospital bed and it fit that mattress very well. One of the nicest things about this cover was that it was quiet–no plastic crinkling sounds when moving the bed position, or just tossing and turning a bit at night.
2. An Alzheimer’s friendly clock. There are many clocks available for purchase, but I can only begin to tell you how helpful this clock was – especially in the early and middle stages of dementia. We bought two. One for mom’s bedroom and one to keep in the kitchen near her spot at the table. There comes a time in the Alzheimer’s journey where the ability to measure time is lost. You can read my post highlighting the benefits of this clock in my previous post, “When Time Stands Still,” which you can find here. To be honest, now that we’re retired and not marking time with daily routines, hubby and I reference this clock ourselves when we’re having a “what day is it anyway?” moment of our own.
3. These waterproof pads.Yes, disposable ones are nice, especially when your loved one is sick and having bouts of diarrhea. However, these are wonderful for everyday use. I recommend you purchase the largest size so as to cover as much of the bed as possible. More often than not, whatever accident happens will be caught on this pad, which will save you changing all of the sheets and blankets in the wee hours of the morning. These pads will also come in quite handy if your loved one likes to sit in a recliner or other upholstered chair.
4. A wireless security camera. I know there are a lot of camera options out there these days. This D-Link camera did a great job of helping us see mom when she would get up at night – its night vision and ability to pan and tilt remotely was so helpful. This camera helped me in the earlier stages when she was living on her own and I just wanted to check-in and make sure she was okay. In later stages when she needed to live with us, it picked up on her motions at night alerting me to any needs she might have for my help or intervention.
5. And just for fun, we bought this colored pencil set and plenty of adult coloring books. My mom just loved them when she was in the middle stages and earlier part of late-stage dementia. Not only did she enjoy coloring, but she also enjoyed sorting the pencils into color groupings. The zippered case was nice too…it was amazing what all she could squirrel away in there along with her pencils.
Interesting thing to note: as the disease progressed, Momma gravitated toward using only green and yellow in her coloring. This meant that over time we bought various colored pencils sets to replace the greens and yellows and now have LOTS of colored pencils in every color but green or yellow.
There were many defining moments back in 2015 which God used to help me understand that my sweet Momma needed more of my help. I’m resharing this particular post because “auditory hallucinations” were one of the signposts in my mom’s Alzeheimer’s disease progression. I would also like to mention that God’s timing in answering prayers may sometimes seem slow, but His timing is always perfect. He answered my mother’s prayer on May 24, 2020.
About 30 seconds after wheeling her cart into her local Pick n’ Save grocery store, Momma abruptly stopped in front of the produce section and informed me she needed to take her hearing aids out. The clatter of carts, the din of voices, and incessant cash register beeping were just too much. She pulled each device out and carefully placed them in a little pouch we keep in her purse. With a look of great satisfaction on her face, she smiled broadly, and said, “Ahhhh! Peace and quiet.”
But, Momma’s quiet world isn’t always quiet. Occasionally, she’ll be sitting in her favorite chair and then suddenly wave her hand in agitation, as if shooing someone away. “Oh, be quiet! Go away!” she’ll scold. I’ll ask Momma who she is talking to and she’ll reply, “Don’t you hear him? He keeps singing that same…
“Touch can reach through the fog, confusion, and fear of dementia. Reassuring touch grounds those who are spatially disoriented, bring people back to their bodies, and increases their awareness in present time and space. One touch can affirm that they are not alone and they are valued by the person who is beside them.”
Teresa Stecker, R.N., Hospice Nurse, excerpt from Creating Moments of Joy Along the Alzheimer’s Journey, by JoLene Brackey
Following mom’s recent and very life-altering stroke, I wanted to make sure my sister Viv would be able to share some special time with our mom. Between the restrictions related to COVID-19, my sister’s work schedule, and her car that needed tires and brakes, Viv hadn’t been able to see mom, and I felt time was running out. I phoned Viv and told her that I thought mom would be going Home to heaven soon and encouraged her to visit if she could.
In an effort to prevent the spread of COVID-19, visiting a loved one in a care facility was limited to window visits. But there was an allowance for residents who were in end of life or needed “comfort care.” Mom had been under hospice care for quite some time, but had now officially transitioned to end of life care, so family was permitted to gather as long as certain precautions were taken.
Viv didn’t have reliable transportation, but said she could come on Wednesday when her daughter would be able to bring her. In my heart, I was worried that mom wouldn’t make it until Wednesday, but didn’t want to burden Viv with trying to pressure someone else to bring her or tempt her to drive a car that was not roadworthy. By Tuesday, Mom was sleeping a lot and had completely stopped eating and drinking, so I prayed that Viv would be able to make it in time and that she would find a measure of peace for having been here.
I noticed that mom was a tiny bit more alert in the minutes immediately following being changed and turned, so requested that her caregivers do her daily cares shortly before Viv was scheduled to arrive at 1 pm. They say that when a person is in the end stage of life there is often a rally, or a short time of clarity. I hoped and prayed Viv would get one of those moments.
Mom was weak and groggy when Viv and her daughter Jessie arrived, but she had her eyes open and was more talkative than she had been since her stroke on Sunday. Viv lotioned mom’s hands while she visited, which was something that seemed to be very soothing for mom. Mom started talking and tried to tell her, among other things, that her arms and mouth didn’t work anymore.
It was the moment of clarity I had been praying for. My heart rejoiced seeing God’s answer to prayer as they had that little moment together.