Tag: caregiving

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Walk This Way

Dad and I just finished a morning walk. We headed down the slope of our driveway, then up a steep hill to the street above us. Starting uphill gets the hardest part over with and then we can settle in for more gradual inclines and downhill slopes as we make our way around two neighborhood blocks.

Today Dad is in his wheelchair which involves me pushing his 160 pounds along with the weight of the chair.  He can still walk. Fast when his mind allows. Mostly he shuffles. He is not as steady on his feet and has developed a fear of falling. Even though I hold onto him and use a gate belt with multiple handles what once was a 20-minute walk takes about 45 minutes now. The wheelchair is a great next step in keeping him on his feet. Recently, I have him holding onto and pushing his wheelchair for a portion of our walk and he actually takes short steps, slow but much better than shuffling. And, if he gets tired he can just sit down.

When dad is in his wheelchair, he no longer keeps his feet on the footrests. To avoid injury to him, and a great deal of frustration for me, I found foot wraps that attach around his feet securing them to the footrests. He also wears a safety strap around his torso with a quick connection around the chair as he has been unexpectedly standing up and at times while the chair was moving.

Dad’s cognitive limitations keep him from  moving the chair on his own or using a walker effectively. Although the wheelchair has been an adjustment, it does keep Dad from following strangers and helps him feel safer especially when he is disoriented with his surroundings or doesn’t recognize me. He is still quite strong so depending on his reality we prevent any resistance altogether and use the chair. We can attend crowded events if we wish, go for long distances, navigate elevators better, and get to appointments on time instead of stressing at shuffle speed.

I took a second walk today. My care partner stayed with Dad while I went to our favorite beach. It was the first time I have been able to get to the beach this season. Although I was there by myself, I was definitely not alone. Dad was there. I thought about how he collected only black rocks until his pockets were so full his shorts started to drop, waded barefoot in the surf even when the water was so cold our feet grew numb and turned red, and watched patiently while I photographed a bird or shell. We shared hours and miles at this beach. Now I can’t get him onto the sand here because this beach doesn’t have a paved entrance.

Instead, I sometimes take Dad to the sidewalk along the seawall and push him in his chair near the water. It is important to me to keep him on his feet as long as possible for our quality of life and level of care. Lewy Body Dementia is easier when we embrace change and do our best with what we have to work with. So, For now, we walk this way – and sometimes that way, while we take things in stride.

To see Dad’s progression from hiking to walking miles on the beach to his wheelchair walks, read blog posts The Beachcomber, Go West Young Man, and Grand Canyon Light and Laughter

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Morning Banana

This morning my caregiver mentioned that Dad was confused more than usual. On this particular day, he got out of bed, picked up his slippers, and attempted to leave our home. Then she said, “It only took two bites of a banana, and he was back to his more usual self.”  Dad likes bananas now more than ever. In fact, anything sweet or salty are typical for this stage of dementia.

I keep bananas in the house and give Dad one every morning to start breakfast. For as long as I can remember, Dad has eaten a banana first thing every morning. Afterwards he would do a few chores and a few hours later sit down for breakfast.

Bananas are an excellent food choice for loved ones with dementia. The fruit is portable, palatable, and loaded with potassium which helps regulate fluids and is important for muscle function. It also provides magnesium, vitamins B6 and C, manganese, and fiber. Depending on the ripeness of the banana, it can also help with gut health.

Dad has dysphagia and the banana is easy to chew and swallow. Years ago, I gave him a whole banana to peel and enjoy. When he started to wrap the peel up inside out and get banana all over his hands, I decided to peel it, cut it up, and put it on a plate for him to eat with his adaptive fork.

Sugar can cause increased delusions for Dad, so bananas and other fruit provide a natural sweet option with less  complications. Sometimes I make banana walnut muffins for him with the overly ripe bananas. Bananas are perfect for smoothies too.

While Dad enjoys the flavor of bananas, more importantly, there is a routine and visual familiarity surrounding the fruit that helps him find reality in spite of the effects of his Lewy Body Dementia. I’m grateful for the insights of our caregiver, and for the health, enjoyment, and comfort bananas bring to Dad.

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Are You, You?

Dad enjoyed a day with his caregiver while I went to a conference for the day.  After the caregiver  left, he looked at me in his fatherly way and asked, “Are you, you?” Be still my heart. I said “Yes, It’s me.” He smiled and squeezed my hand.

In previous years, Dad has been able to go with me and sit in for my sessions, but now I only include him for short, close-to-home events.  After a presentation a few weeks ago, as I returned to my chair next to Dad, he quickly stood up and gave me a big kiss on the cheek, then just as quickly sat back down. I received another of these kisses after we selected new eyeglass frames for him.  Lewy Body Dementia has affected  most of Dad’s speech, yet he still finds ways of expressing himself.  

These communications are physically face-to-face within inches. Well inside the sphere of intimate relationships between father and daughter. I’ve learned that when I want to connect with Dad, all I need to do is get physically close. At 65 years of age, I still feel everything a child might experience from a loving father. It is profound that we have this connection mostly without words. Not because of me, but because of my father who took the lead in our relationship the day I was born.

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I’m a Grown Man!

One of the earliest memories I have of Dad caring for me is an image of him removing my snow boots and rubbing my tiny feet in his hands to warm them. It comes to mind whether I am just washing the sand from Dad’s feet after a beach walk or giving him his daily shower.

Since we’ve gone through gradual changes together we have a good routine for personal hygiene following the same step-by-step process for years. It typically goes smoothly and calmly. Every once in a while Dad goes to a different place, time or experience and the process requires a greater level of patience and encouragement. Dad once described it as, “When my brain works backwards.”

I’ve seen Dad’s brain work backwards many times during nighttime sleep disturbances when he is acting out his dreams and delusions which is common for Lewy Body Dementia. Interestingly, although he no longer uses more than a few words at a time when he is in the moment, during altered state episodes, he speaks full sentences and although whispering, converses with whomever he is seeing in his mind. Rather than disturb him, I often let him continue. And most of the time, even if I get him back in bed, he remains in his mind, not knowing I am with him or what we are doing in the present.

Last week, during bath time, Dad’s mind started working backwards. We always begin with toileting. When I asked Dad to sit down, he announced, “I’m a grown man!” You might think I was startled. But no. I was elated to hear his strong voice and see his independent nature. I reminded him that grown men use the toilet and asked him please. This worked. I thought the episode was over until it came time to clean his backside. Typically, he wouldn’t notice or care. This time, Dad said, “Get outta there!” which fortunately, even with a chuckle, I was able to do quickly.

Bathing was uneventful with Dad sitting on a shower chair holding the spray shower head as a distraction while I soaped him up head to toe. I softly sang one of Dad’s favorite tunes, “How in the heck can I wash my neck if it ain’t gonna rain no more…,” and again, I thought the disturbance was over.

I got Dad dried and partially dressed, then moved on to shaving as usual. When I got the shaver out, Dad firmly and loudly asked, “Do you mean you are telling me I have to shave? I’m a grown man!” Not knowing exactly what would work, I said, “We always shave after your shower Dad.” Cognitively, Dad hasn’t been able to shave himself for a few months, but I hand him the shaver. He says, “I use a different one.” This is true, I recently bought a new one, and luckily still had the old one. I got the old shaver out of the drawer and gave it to Dad. He held it, looked at it but didn’t know what to do with it. While he was distracted, I start shaving him with the new shaver.

By now, shower time had taken 20-minutes longer than usual and we still weren’t finished. Fortunately, we didn’t have to be someplace on schedule. Dad grimaced while I brushed his hair, gave me the over-his-eyeglasses look when I helped him with his dentures, and huffed while I finished dressing him.

The last thing we always do is look in the mirror. Usually I say, “There you go handsome.” On this day I said, “I’m glad you are a grown man, and I am glad you are my Dad.”

It isn’t always easy, but for me it is a privilege to care for Dad, after all he has done the same for me. I treasure the sound of his voice, and his strong independent nature he carried with so much success for most of his life. It’s nice to be reminded, “He is a grown man!