Category Archives: ALS

Thank You ALS Association Mid West Chapter

We are a Family of Three Generations Living Under 1 Roof

Let me help you transform your home into a comfortable, safe, accessible and beautiful
space that you can call home for many years. Why not invest in your current residence
instead of paying for a retirement village or assisted living?
Your future begins now!

As an expert in Universal Design and Living in Place design, I have the education and experience to help you achieve your goals. I am the only Interior Designer in the Wichita area who is a Certified Living Place Professional (CLIPP) and a practitioner of the American Society of Interior Designers (ASID). My specialties include multi-generational design, and I always anticipate the changes that life may bring to your family when working on your design plan. My ultimate goal is to create a space you and your family will love to call home today and tomorrow.

OUR STORY

After a 30-year career in a retail design company, I started my own design firm called “Designs for Life.” The tagline “Interiors Designed for the Way You Live … Today and Tomorrow” reflects that a well-designed home should be able to adapt to life’s changes.

My family should be the Poster Children for the Living in Place design movement. We are a family of three generations living under one roof. My late husband, Jim, and I were in our late 60s with a few health issues; we both enjoyed our work and had no plans to retire. Our son, Bryan, was diagnosed with ALS 20 years ago. He has increasing limitations with mobility and independence. My mother, Dot, who just celebrated her 97th birthday, remains active in helping us care for one another.

It became apparent that we would need to find a home to renovate to help us all live our best lives. Completing our new home was the most daunting and satisfying project of my career. I always prided myself on my ability to meet the needs of my clients. My personal experiences and newfound knowledge allow me to provide so much more.

We are replacing the outdated “Aging in Place” design with a proactive “Living in Place” approach. By discreetly incorporating long-term adaptive features into everyday decor, homes can be prepared for expected and unexpected life changes. The goal is to provide everyone with a comfortable, safe, and accessible home that can support them through any injury, illness, or age challenges. The Living in Place Institute helps eliminate the stigma of “Aging in Place” and allows people to embrace the inevitable life changes while still living independently in their own homes.

Vicki Flores, a Living In Place Pro, has mastered creating homes that exude beauty, safety, and comfort. With her exceptional skills and expertise, she transforms living spaces into havens that are not only aesthetically pleasing but also safe and practical. Give your home the touch of Vicki’s magic and experience the joy of living in a place that is both beautiful and function

Hospice and ALS

Most people actuate HOSPICE with end of life. In most cases hospice care givers come into a patient and their families lives when the diagnosis is terminal and the patient has around 6 months until end of life. The purpose of hospice is to make “end of life” more comfortable for the patient and their loved ones. Frankly, most families wait too long for this service because they don’t want their loved one to think they are giving up on them or admit that they are actually facing the end of their life.

We waited too long to call hospice when my dad had terminal cancer and chose not to have treatment because no medical person suggested it to us. I had gone pick up some meds for him and found myself facing a Hospice office. I went in not knowing what to expect and came out with an appointment to visit us the next day. They came with a hospital bed and all the essentials for his care and set up in the family room. Someone was with the family most of the time and were a phone call away. He died two weeks later. How I wish we had taken advantage of this months earlier.

HOSPICE and ALS

My experience with Hospice is much different today. My son has ALS. He as been living with it for nearly 20 years. He has been in hospice for 3 years and we both are so thankful that we made the call.

ALS is a fatal disease as you are all aware. There is no cure and there is no treatment. There is also no timetable for end of life. A PALS can go on hospice as soon as they are diagnosed. Our Phoenix Home Health and Hospice in Kansas provides all equipment delivered by Broadway Medical and set up in our home. A nurse visits us at least once a week and has a physician available for her to call and they provide all his ALS meds. (Much better than your Neurologist giving you a diagnosis and telling you to go get ready to die?) A bath aid comes twice a week. This compassionate group of people have an essential place in our daily lives.

You may have heard that to be on Hospice, the patient needs to sign a DNR. That can be revoked at any time by the patient or his legal medical representative. Bryan has gone to the hospital by ambulance twice since being on hospice Each time his hospice nurse came to sign a waiver that he was off hospice so he could be treated. When he was released he was signed back in. This is one of the few benefits we as PALS and CALS are offered at no charge. They work together with the ALS local chapter in my area.

As a mother and caregiver, I m asking you to use this valuable aid available to you without cost. Many still say “It’s not time yet or I don’t want my pal to think I’m giving up on them”. You are taking this advantage of a benefit to make all your lives easier for however many months, years, or decades, you fight this horrible disease.

If you have questions or concerns or just want to talk, leave me a message here and I will be happy to help in any way that I can.

Bryan’s Big 50…Something to Really Celebrate

Bryan was 33 years old when he was diagnosed with ALS. He had spent 5 years teaching in Prague and was beginning his career at Wichita State University. He had fallen a few times and noticed weakness in his hands when trying to button a shirt. The neurologist told him then what they are still telling the victims of ALS now. There is no cure and no treatment. In short go home and prepare to die within 3 years. At a follow-up clinic here in Wichita, the neurologist in charge told him to sign a DNR put in a feeding tube and get his affairs’ in order because he had about 18 months. Bryan told him “no thank you.”

Needless to say, we were devastated. There was nothing we could do! Eventually an nurse from the ALS Association visited us and gave Bryan a list of vitamins to take daily. She told him to eat as much as possible because at some point he might start loosing weight and she wanted him to have extra. She also warned him not to eat anything with MSG because his body could not process it.

She had given us HOPE in a very dark world. We banded together as a family and started to make the most of each day. No one knows how long they have and every moment is precious.

We had a large family gathering in Las Vegas with many of Bryans friends in attendance to celebrate his birthday that year. We didn’t know how many more we could celebrate with him. Our family and friends made 3 trips over the years, to an all inclusive resort near Cancun while he could still travel safely.

This was our first family trip to Mexico

As we celebrate the big 50, 17 years after his diagnosis, I am in awe of this man. He can still walk with the use of a walker. He still eats most everything he wants. (no feeding Tube). The use of his arms and hands is very limited so we are his hands and arms. He has learned ways to type and play games on his computer. He is as self reliant as possible. He chooses to be happy. Bry talks ( his speech is a little slurred when he is tired) and laughs with all the nurses and aides that visit ( that is a story for another post) .

I want to make a point that this is not the norm for most ALS victims and their families. Their lives are ripped apart and they are helpless as the disease takes more and more abilities away. We both realize that those same things are in store for us. His abilities are also slipping away, but thankfully more slowly.

He has been my rock since Jim passed in August. He helped me with all the legal and personal changes that have to be made when a spouse dies. Jim was our chef so Bryan and our wonderful family aide Franci have taken over meal planning, grocery shopping and cooking. I am spoiled.

Every Patient with ALS (PALS) is totally different. Bryan does have a very slow progressing type. (most other ALS patients, PALS are not as fortunate. His breathing capacity is not great and he has some very rough days with muscle spasms and cramping I know because he is very quiet on those days but he doesn’t complain. He works hard to keep from regressing.

This was a Big cerebration for all of us. Despite his early prognosis, Bryan Flores is still living with this monster disease, ALS.

www.under1roof.live/living-in-your-place-let-us-help-2/

I would love to help you create a Forever Home! Click this link http://www.under1roof.live/living-in-your-place-let-us-help-2/

Can you choose to be Happy?

Happiness is that feeling that comes over you when you know life is good and you can’t help but smile. … Happiness is a sense of well-being, joy, or contentment. When people are successful, or safe, or lucky, they feel happiness.

A few months ago, I was caught off-guard when a prospective client asked me a question soon after I answered the phone. “Are you always happy or is just because of the sales business you’re in?” The more I thought about it the more insulted I became. ( I know that was not his intention but it really got to me.) First of all, I am in a service profession. I do sell things but I have never thought of myself as in a sales business. I did respond by email. My first line was” I am happy; I choose to be happy.”

If you know much about my life circumstances, you might also question my reasoning.(Cliff Notes)

Reasons not to be happy.

Our 49 year old son has been living with ALS for over 15 years. He has no use of his hands and arms so we are those for him. He walks with a walker. He eats with our help. His voice is starting slur and we know his health is declining. ALS is always fatal There is no cure or even treatment.
My 94 year old Mother shares a home with us. Her health is declining.
My husband, Jim recently started dialysis 3 times a week and is doing chemo 1 day a week.
I work to help pay for the home aides that help us.

All the responsibilities of home fall on me.

Reasons to be Happy

Our 49 year old son has been living with ALS for over 15 years! ( most ALS victims only live 2-5 years after diagnosis, if that long) I am honored to be his arms and hands and that he still has so many capabilities that others with this disease lack. He can walk with a walker! He is not yet confined to a wheelchair. It is my pleasure to help him eat a full meal every evening at family dinner. No feeding tube. His voice is starting to slur but he has a wonderful laugh and a writers sense of humor.( He was a creative writing professor.)
How fortunate am I to have my best friend, My 94 year old mother right in the next room when I need to share a funny story about my day or watch a girly net flick series or to hang out on the deck and read a book. She shares our dinner hour every evening with Jim , Bryan and I. During the Covid shut down I knew she was safe and happy. That is a true blessing!
With Jim it is harder to be happy. I am so stressed about his health. We have been married nearly 54 years. He has been my only love. All his life he has been a happy, people-loving family man. He is trying so hard to stay alive with treatments that are taking every ounce of his energy and personality. I need to be his happiness and to find some joy in the day to share with him.

It takes a village is so true. God has filled my village with angels. Almost two years ago, when I knew that Jim could no longer help me with Bryan’s care, Kim at #ALS Association -mid America, told me about Hospice care for ALS patients (PALS). Care givers are CALS. Because it is a fatal disease with no proven treatment, the PAL can go on the program at any time after diagnosis. We chose to sign up and Bryan and I are so happy that we did. An RN Sara comes one a week ( she will come more as needed) to do a check up, access his needs and order meds or equipment at no cost to us. Katie comes twice a week to help him shower. I am not alone in making decisions about his health and this takes such an emotional weight off my shoulders.

Shortly after things started to open up after covid, I knew that I needed to get out of my home office a bit and work downtown more. A friend recommend Shelly and she in turn Franci. These two angels are in our home from about noon to four 6 days a week. They are licensed caregivers and give love and care to my family when I am not here. There has been a noticeable positive change in Bryan, Dot and Jim since our home is filled with this positive energy. I get to do work I enjoy with people I love to be with and when I come home in the late afternoon, I get to be the mother, daughter and wife that I need to be with a good and happy attitude to take care of their needs and enjoy them for the evening.

I am not a Pollyanna, I have days that I don’t want to get out of bed….and sometimes when the ladies are here, I do stay in bed. I shed my share of tears usually in my therapists office or with a friend over a glass of wine. Life does go on. As I write this, our garage lift stopped working. The refrigerator seems to be on the blink and our grass may have army worms. This may be the time to call all those people who say “let me know if I can do anything! ”

A Box on the Shelf

We all have our own way of coping with the things life throws at us. The first few months after Bryans diagnosis of ALS, I could think of nothing else. It consumed my days and nights. Thinking about his future ; our future. At some point I realized that I only had the now. I could keep stressing about the “what will be” but I needed to embrace the now and make the best of it for our family. I’m the one who sets the tone and I need to be positive.

That’s when I found the box. Its an imaginary box that looks very much like this picture. I mentally put all my fears about the future and this monstrous disease, put them in the box and closed the lid. It is on a shelf in my brain and mostly stays there.

A corner pops up when I tell someone about the horrors patients (pals) and caregivers (cals) go through with this beast of a disease and when I prepare for the Walk to Defeat ALS fund raiser each year. But I never plan to open it. I know what it holds.

I’m having a more difficult time finding a spot for Jim’s chemo and dialysis phase of our lives. There are only a few more weeks of Chemo. I’m planning on him gaining weight back and getting in a rhythm of dropping him off at treatment and going into my design office and coming home and sharing family dinner. What do you know? I don’t need a box ! I am looking forward to the future.

Wake-up Call

In July of 2014, I took some downtime with Megan and Matt in Kansas City and designed an elevator location for our Longwood house. On the trip home, I was struck with severe abdominal pain. Major surgery fixed the problem.

While recuperating at home, with my walker bumping along the walls, and showering being a major struggle, I had a great epiphany; we had to move from my beloved home. Adding an elevator would only be a little band aid and a costly one. Much more needed to be done to make our house not only barrier friendly to Bryan, but Jim and I were not getting any younger or more agile.

We (Jim, Bryan and I) decided that if we were going to move, we should have a place for Grandma Dot, my fabulous, then 87-year-old mother, to join us. So our list of requirements grew; exterior space to add an addition to house an elevator, a suite large enough for Bryan to have privacy and a bath large enough to add a roll in shower, a two room suite for Grandma and two offices spaces for Jim and I to be able to work from home.

House hunting began that day. Thank God for our daughter, Megan, and Zillow! Megan was staying with us to help with my recovery, but I added “head house hunter” to her nursing duties. We looked at hundreds of homes online and if anything looked promising, Megan, Jim, Dot, and Bryan would join our realtor Janelle to check it out. I, of course, was still on drugs and pretty immobile since surgery was less two weeks prior.

As I reflect on those weeks, I must nominate my entire family for Sainthood. It all seemed perfectly natural to me. I needed to get my family in a safe, comfortable and accessible home as soon as possible.

After just a few weeks, we stumbled upon this 4 bedroom 3 bath ranch. It required a lot of updating but it had the spaces to fit the needs of our multigenerational family.

The Blending Begins

A year after we lost my Dad, Dot moved into a condo that we totally renovated. She purchased new furniture and window treatments and was quite comfortable and content.

Let me preface this by saying that we are a very close family and she is at the center because of her unconditional love, amazing personality and sense of humor. She is more of a contemporary than an elder and is a special part of my social circle. We have played in the same Bunko group for over 40 years. Megan calls her” Switzerland” because she tries to stay neutral when there is any conflict.

Before we began house hunting in earnest, we told Dot that we were planning a space for her in the new home. We told her that she didn’t have to come with us right away, but that we were going to be sure that there was a place when she was ready. She told us that she would think it over. Two days later she said that if we were sure, then she was IN! Jim assured her that this is what we all wanted.

I’m not sure that this arrangement would work for every family. But we set out to make this home belong to all of us. Dot and Bryan were not moving in with Jim and Vicki; we would be sharing a home together. They are both paying rent and contributing to food costs. Each paid for certain aspects of the renovations.

Our Plum Tree home required an elevator and three remodeled bathrooms , so we knew that it would be 3-4 months before move in. Dot put her condo on the market and sold it in just a few days to someone who wanted two-week possession. She had to be out by October 31.

The timeline is a little crazy here, I had had major surgery on August 1 so I am less than 100%. At the same time, Jim was being treated for Crohn’s Disease.( I left that out of the beginning because I didn’t want to sound like a soap opera, but it is important now because of what is coming next) On October 14 (Our 48th Wedding Anniversary) Jim had a tumor removed. Seems it wasn’t Crohn’s after all….just a touch of cancer! The Docs felt that they had removed it all but still recommended Chemo.

He came to Dot’s condo from the hospital so that we could care for him while we packed. Again, our incredible Megan had come to help care for her Dad while I worked only to be a part of the great move.

The First Obstical

Five things had to happen before the family could move into our Plum Tree house

The Elevator had to be installed.
Bryan’s bath had to be revamped for a roll- in shower
Dot’s bath needed tub replaced with a walk in shower
The master bath needed a lot of love and the shower enlarged.
And of course, we had to find a way to get Bryan and Dot comfortably and safely into the house in the first place.

The front steps were fairly steep and there was no handrail. The back entrance involved about 20 steps with no adequate handrail to grasp and the garage steps were not easily accessible for any of us. A fabulous handyman, Mark Lawrence, who was very familiar with accessibility issues came to my rescue and installed new garage steps with handrails and grab bars.

Accessibility issues were not uncommon when we were searching for homes. It is one of the things that buyers don’t think much about unless faced with an injury or worn out joints. Safety features are not that expensive when you think of the cost of a fall. I hope that builders and remodelers will join the movement to keep our homes safe, comfortable, and accessible for everyone.

Elevating our Lives

A Little Fancy French to denote that this door leads an Elevator

Just to recap… We are frantically searching for a home to accommodate our multi-generational family with accessibility issues. We require an elevator, 2 offices, 3 accessible bathrooms, a space for my the 88 year young mother, a suite for our 44 year old son who is battling ALS and a guest area for our Kansas City kids. Did I mention that we have a limited budget?

Introduction (click on introduction to check out our story from the beginning)

Between our realtor and Zillow, we had probably looked at over 100 houses. Since I was recovering from major surgery just 3 weeks prior and it was” Kansas August Hot”, I was discouraged. Our daughter, Megan, was still “visiting” from Kansas City to help her crazy Mom recoup and find a new home. (So thankful for her and husband Matt)

This is the first view that I had of the Plum Tree house. I fell in love with the view but it also showed great potential for us to be able to install an elevator built with bulk on the exterior of the house and not take up any interior square footage. Yeah! Although the décor was not my style, it is my training to look for potential and this scored a 10!

The open entry gives every one plenty of space to move around once you mange to get into the home

The addition of the elevator was by far the most costly and valuable part of our renovation. The value it adds to our home can not compare to the value it adds to our lives. The members of the Access Elevator http://www.accesselevatorinc.com/ team were amazing.