Ms. Lula's Journey with Alzheimers
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19/08/2022
Although we’ve been quiet for some time, Ms. Lula is doing well…aging beautifully and gracefully.
Her oldest son and my oldest brother is on hospice in a beautiful hospice home in Greenville NC. He’s 67 yrs old. He is resting peacefully and, as common at end of life, not eating or drinking at this time. The nurse said a couple of nights ago that his heart rate is slowing. He is probably days away from taking his final breathe. Although difficult for loved ones, it’s a part of the life cycle.
He was diagnosed with Lewy body dementia approximately 5 years ago. It progressed at a fairly rapid pace (particularly this last year) but is a different form of dementia than the dementia Ms. Lula has, which is Alzheimer’s dementia. It is often associated with Parkinson’s disease. Here is a link for more information https://www.verywellhealth.com/lewy-body-dementia-stages-progression-98735
HIs wife appears to be in a better place now that he’s resting peacefully in a quiet atmosphere which specializes in dying patients. The rooms here are free of all the bells and whistles that are found in a hospital room. The staff has been wonderful to both my brother, sis in law, and myself.
Hearing is the last thing to go so I called our mother, Ms Lula, a couple of days ago. He was able to hear her voice one last time. We immediately noticed his facial gestures acknowledging her voice (a boy always knows and longs for the voice of his mother). It was a great gift for all of us.
Well that’s all for now. Please continue to keep our family in your thoughts and prayers.
29/06/2021
Ms. Lula’s youngest (and cutest…lol) child and caretaker turns 50!
Yesterday I turned 50 years old. I had an amazing day with family and friends as we celebrated the occasion with an Open House for Veteran Family Home (https://veteranfamilyhome.com/). This is an independent living home for Veterans or their family members in need of housing in a family style environment. We officially open on July 2nd and already have multiple requests. This is the first of many homes.
Thank you to everyone who made this day better than great. Above is a sneak peak of pics from the day. I’m collecting pics from friends as well as my photographer and will post to the website above.
Ms. Lula stayed in her new room and hospital bed this day as family/friends came to give her some love.
Thank you again for making the day great. Here’s to many more years full of life, love, laughter, faith, food, and fun!
26/06/2021
We Finally Received the Bed and Hoyer Lift!!!!
They arrived a couple of days ago and have been so helpful. Ms. Lula slept so comfortable yesterday and it’s totally wonderful for us, the caregivers.
Ms. Lula’s been talking and laughing like never before. She so comfortable when resting, that sometimes we just enjoy watching her sleep.
Thank you for your thoughts, love, support and well wishes.
22/06/2021
Sooooo Frustrating!!!! Warning…Long but Important Post
My mother, Ms. Lula, is almost completely bedridden. She no longer walks, transfers independently, and is completely incontinent. She cannot articulate her needs at all. We have to know by putting her on a schedule to ensure she’s clean, dry, and free of infections or bed soars.
For the past month, I’ve been attempting to get a hospital bed and Hoyer lift to relieve some tension off our bodies. This is where the frustration comes in. The DME company that we’ve been going through (Super Health) is not very responsive, has extensive hold times when you call, and some of the agents are completely rude.
There have been days I’ve called, waited for 45 minutes, requested a callback, they call, put me on hold then the call hangs up. I feel like those folks who were trying to get through to the EDD office for their unemployment checks.
I finally got through today. A rep name Jennifer (who was kind by the way) informed me that although my doctor provided great documentation notes quantifying the need for these items, it was not enough 😩 check out the link in bio to read more…
26/05/2021
Late post ⚠️Congratulations to the new Miss Universe, Miss Mexico!
As a young girl, Ms. Lula and I would watch Miss America and Miss Universe pageants every year. This past Sunday night I watched the pageant with one of our caregivers, Margarita.
Ms. Lula sleeps a lot more these days so she was already asleep. Oh how I miss those special mommy/daughter times. Well...we still have them these days, they just look different but oh how I cherish every moment.
25/05/2021
Ms. Lula and Jimmy holding hand as the wife looks on.
We are blessed to have a husband wife care team who comes every Sunday. Ms. Lula brightens up when she sees the husband. She calls him “Jimmy”, (his real name is Godfrey) and talks and laugh with him for hours when they arrive.
14/05/2021
Tribute to Mr and Mrs Lawrence Vaughn for their faithful service to Mt. Zion Missionary Baptist Church and the Sumter SC community.
The second pic is a glamor shot (taken many years ago) of Ms. Lula and her hubby of over 56 years (my daddy). He passed away peacefully in 2012. To know him is to love him!
14/05/2021
Ms. Lula’s Back!
Life has been busy for Ms. Lula and her caretaker. We recently completed a documentary on her journey which has taken quite a bit of energy.
She was also honored by her church in SC, Mt. Zion Missionary Baptist Church, for her many years of service to her community.
We also have a guess staying with us for awhile. More to come on that later. We just wanted to reconnect.
We’ve miss everyone and hope you all had a great Mother’s Day!
30/03/2021
22/02/2021
Ms. Lula’s New Ramp!! 🤩
17/02/2021
When Ms. Lula first came to SD she was able to help with chores from time to time and even asked to help.
The pictures were taken in 2017. Today she often talks about how she has to go to “work” or go to “school” but is no longer able to help around the house.
Her caretaker sure misses those days. Lol
On Friday Feb 12th, Ms. Lula celebrated her 87th birthday via Zoom with family and friends.
Her caretaker got her all made up for the event...hair, nails, makeup..the works. She looked stunning. Her caregivers outdid themselves with decorations and an array of delectable food to feed an army though it was just the 4 of us in the house. They love Ms. Lula and take great care of her.
Family and friends dropped in from all over the country, many of whom had not seen her in many years. It was not only a birthday celebration but also a reunion.
She even received a beautiful a ca****la tribute from an awesome young lady, Michelle Breaux, who wanted to show some love and appreciation for all that Ms. Lula had done in her life growing up.
Though it may appeared she did not understand exactly what was going on, her spirit was united with the people and the occasion.
Happy Birthday Ms. Lula. Here’s to good health,
12/02/2021
Ms. Lula’s turning 87 yrs old today. Family and friends will gather for a Zoom drop-in celebration today 3p - 5p PST (6p - 8p EST)
Attached is her invitation with a special poem that captures her qualities and the “Ms Lula Caricature” created just for her.
You will be seeing more of the “Ms. Lula Caricature” in days to come so look out for that but for now please help me celebrate Ms. Lula’s 87th year of living! Thank you God for another year!
✍️
11/02/2021
This is a celebration of Ms. Lula’s 86th Birthday continuation video.
She is surrounded by our caregiver Margarita, one of her sitters from the Legacy Corps, Nanette, our friends who are like family Sandra, Elaine, and little Sadie, and my International Students from Saudia Arabia Mohammed, Anas, and Abudullahramen. Also is my adopted host daughter Kaho from Japan.
Her caretaker was once again so nervous having candles so close by her and so grateful for friends making sure no mishaps occurred.
This video captured her growing confusion as she attempted to blow out her candle. It was such an endearing (and funny) moment.
11/02/2021
This is a celebration of Ms. Lula’s 86th Birthday.
She is surrounded by our caregiver Margarita, one of her sitters from the Legacy Corps, Nanette, our friends who are like family Sandra, Elaine, and little Sadie, and my International Students from Saudia Arabia Mohammed, Anas, and Abudullahramen. Also is my adopted host daughter Kaho from Japan.
My students love my mom. They treat her with TLC as if she was their grandmother. In their country, they are accustomed to having elders in the home, so this was no strange thing to them.
As I mentioned in a previous post, I think Ms. Lula thrived because of their energy, the love, the different music and all the laughter in our home.
For her birthday in 2019, Ms. Lula's caretaker took her back to SC to spend time with family and friends and to give the caretaker a bit of a break.
Ms. Lula talked and fidgeted the entire 6 hours of the trip as evident in the video attached. By the time they arrived, her caretaker was exhausted.
Shortly after their arrival, the family gathered and took her to Golden Corral to celebrate her birthday. It was wonderful getting together.
Ms. Lula’s Birthday 2018. Her first Birthday in California.
Her caretaker was excited to celebrate with her but a bit nervous to have candles so close.
She was praying for no mishaps.
08/02/2021
It’s Ms. Lula’s Birthday Week!!
In honor of her birthday, I will be sharing her celebrations through the years starting with 2017.
We always enjoy her birthday celebrations when we are surrounded by loved ones.
This year will be different but she still will have the ✨magical✨ birthday she deserves.
02/02/2021
When mom first arrived to San Diego, we would take monthly trips to CVS to pick up her meds (by the way...she was only on meds to help her sleep, Tylenol for back pain, vitamin, and calcium).
One of the attendants there was so kind to mom and I. She ensured we got everything we needed, shared the story of her journey with her mom who also had Alzheimer’s, and shared some helpful tips.
We caregivers stick together! I so appreciate it...Thanks Margo!
Pic taken 2017
02/02/2021
Every morning and again sometime during the day, we give Ms. Lula hot tea with honey, ginger and lemon to combat cold, virus, flu, and pneumonia. This has been one of our family traditions for centuries so we stick with it.
01/02/2021
As you can see, the weight is going down slowly, which to me is a very good thing. I have no steps to report last week because my focus was completing my project which I'm please to report that..."It Is Finished"!
This weekend I spent time relaxing on my “5th Sunday Retreat Weekend”. Today is my final day. I did go for walks on the beach, but I mostly relaxed, listened to audio books, and watched comedy clips through Dry Bar Comedy which is hours of clean, hilarious comedy.
I must admit, I did check in on Ms. Lula and the kitties a couple of times and of course the caregivers are doing an excellent job. So I will enjoy the rest of this day before it's time to get back to reality tomorrow.
What are you doing or have done for rest?
18/01/2021
I'm hitting my stride. I made at least 10,000 everyday last week. I pushed myself because this week I'm offering myself some grace to tackle a project that I must complete before month's end.
I'm still managing my eating. No emotional eating this week. I found myself a bit more tired though. So if you've been saying " I need or want to get moving this year" please...come join me!
The last weekend of this month is my "5th Sunday Retreat Weekend" where I hire the caregivers for the entire weekend and go away locally for some alone time. I cherish this time.
There are only (4) 5th Sundays a year and January has one this year. So I'm wrapping up this project so I can have a clear mind during my retreat.
12/01/2021
Once a year, Sea World gifts the Military and Veterans a free day to visit the park along with 3 guests.
I had never been to Sea World nor had Ms. Lula. So, as a Veteran, I thought this would be a cool new adventure for the both of us for the 4th of July 2018.
Of course I took My Margarita (our caregiver with us) and a friend of mine Brenda.
We actually had a great time for a few hours then mom was ready to go home. We all enjoyed ourselves and dressed up for the occasion.
11/01/2021
Whoohoo...I made it through last week! I cut back on the carbs and the sugar, been eating plenty of fruits and veggies and got 10,000 steps most days (though not 6 days). I believe it's a good start and I'm super motivated! It's 8:51am PST and I'm at 8,037 steps so far today.
It looks like I lost 2 lbs but that's questionable. The scale I used vacillated between 147 and 149 the first week so I went with 149. Today it was consistent with 147. Let's see what it says next week. My clothes fit the same though it's only week one (but I want results NOW...lol)
Ms. Lula's doing well so I don't feel guilty getting out of the house. Thanks for all the encouragement. See you next week.
07/01/2021
Shortly after Ms. Lula arrived to SD, my brother and I decided to take her to the County Fair.
This turned out to be a bit much for her. She was ready to go soon after we arrived. She became very agitated.
This type of stimulation for a person with dementia is typically never a good idea. Lesson learned.
05/01/2021
Ms. Lula was very active in her church in South Carolina. She enjoyed singing the old hymns which even with her dementia she still remembers the words to the songs. When she first arrived to SD, her caretaker decided to take her to the local nursing home’s Wednesday church service. Ms. Lula enjoyed this so much, she decided to start a Dementia Service at their church. Unfortunately it is no longer “in service” at this time.
05/01/2021
I got my first dose of the vaccine on Christmas Day. Trying to keep Ms Lula, the caregivers, and my patients safe!
02/01/2021
This year has been quite a year for all of us. Not only has there been this ugly pandemic, but there’s also been political upheaval on every level, social unrest, and emotional/financial drain for many. In addition to all of this, Ms Lula declined functionally. This decline took a huge toll on her caretaker which manifested in a 20lb weight gain. Prior to this year, she enjoyed things like hiking, organized walks for a cause, dancing, and going to they gym. She also enjoyed good meals/eating healthy. In 2020 she continued to do some of those things as best she could but fell short in some areas and started suffering from insomnia. Thank God for our caregiver Margarita who made her and Ms. Lula healthy meals (it was the emotional snacking that took her over). This year she plans on re-engaging and shedding this weight.
Taking care of oneself is a crucial part of caregiving. Exercise, respite, proper sleep and fun with good friends/family are important. The caretaker pulled away from a lot of that trying to adjust to this new normal for Ms. Lula. We now think Ms. Lula’s at a stable point so it’s time to roll. Join the caretaker on her weight loss journey. She welcomes words of encouragement (because she’s often exhausted and simply doesn’t feel like doing it) or if you’re on a similar journey share your story whether it’s weight loss/gain, completing a project, running/walking a marathon. Let’s do it together.
In 2021 “good byes” are being said to many things, and one of those things is this extra weight..... NA-NA-NA-NA ...NA-NA-NA-NA ...Hey Hey Hey....Goooodbye!!!!
Heaviest weight 174 lbs (about 2 years ago)
Weight loss down to 133 lbs (I felt my best at this weight and my knees hurt less)
Current weight: 149 lbs (COVID weight gain)
Ideal weight: 130 lbs
Goal weight: 125 lbs (this gives me some wiggle room)
2021 is the year we achieve our goals, so let’s get it!
30/12/2020
As a kid, my mom always wore this “special jacket”. Can you tell what it’s made of?
29/12/2020
Finding Day Care for Ms. Lula
When Ms. Lula first arrived to SD, I explored many options for day to day care. I work full time and needed to continue to do so. So I tried a senior day care for persons with dementia called The Glenner Center. It was an awesome place.
The first day I dropped her off. It was like taking a child to school on her first day. I was so nervous. I called and checked in on her. She did ok with some minor challenges..... 😳
Check out our new blog to hear more about Ms. Lula’s day care experience!
https://www.ezamal.com/ms-lulas-journey-with-alzheimers/finding-day-care-for-ms-lula
Finding Day Care for Ms. Lula — EZAMAL When Ms. Lula first arrived to SD, I explored many options for day to day care. I work full time and needed to continue to do so. So I tried a senior day care for persons with dementia called The Glenner Center. It was an awesome place. The first day I dropped her off. It was like taking a child to
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