Mother’s Day and End Stage ALZ

Quick note: Throughout the process of detailing my journey here, my goal, above all else, has been honesty. I want to continue to be real and raw about this process. My goal of this blog was to reach those who have family members suffering from Alzheimer’s or terminal illnesses. I want to show people that you can continue to live and find joy in small things while enduring severe suffering and heart wrenching pain. That’s why I am here. I want to say again, in case I haven’t made it clear already, I’ve learned a few things that have really helped me to make it through to this stage in this journey and if there is any way that I can help you in your journey, please let me know.

I think I have finally settled into this new stage of Alzheimer’s. It is not a comfortable place to be but I think I have come to terms with it. As a reminder, last time I visited my family (caregiving dad and mother who is sick with Alzheimer’s) in Hawaii we determined our PLAN, our plan of what we will do when my mom’s body finishes her fight. We decided upon details of how we will tell each other the news, how we want to find out and what we will do immediately following. We also had to plan my moms funeral and make decisions for her, decisions that she should have been able to make for herself. It can be days from now, weeks from now or even years. There is no way of telling.

I want to caution to those who may not be in a place where they can hear this, I’m going to speak below about some of the ways Alzheimer’s patients can die.
There are a few ways that people die from Alzheimer’s. It’s important to keep in mind that the disease itself does not kill you. Instead, it deteriorates your brain cells and causes your body to slowly stop working. The ideal way would be for my mom to pass away peacefully in her sleep. However, that is not always the case. My mom may stop eating and become weak and susceptible to infections. She could become unable to swallow or cough which could cause food or water to get in her lungs and develop pneumonia. She could choke on her tongue and suffocate. Please know that this is not easy for me to type. The least ideal way would be that my mom’s organs stop working causing her to suffer in pain. My dad and his team of hospice nurses have a plan for all of these scenarios. The main goal is to eliminate suffering so that she does not leave us in pain. My dad and the nurses have morphine in the house to use when something starts to occur. There is no resuscitating because there is no hope of recovery and there is no way to cure my mom of this awful disease.

Out of all of the stages of Alzheimer’s, the end stage is the most unique. It has given my dad and I a chance to look back over this journey and feel immensely proud. We are proud of the choices we made in the early stage: to care for my mom at home and cherish the moments when she knew who we were. We are proud of my decision during the middle stage: to continue college, stop being a caregiver and try to go on living my life. I am the most proud however, of how my dad has dealt with the late stage or end stage: moving to Hawaii, building a house suitable for a wheel chair and living out his marital vows, ti’l death do us part. We are going to see this through together as a family and because of that we feel immensely proud.

Hard Conversations

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To be completely honest, I don’t really know how to start this blog post. I am currently sitting on my flight headed to Hawaii. At my mom’s most recent check-up the doctor advised my dad to start planning for end of life decisions to be made. We don’t know when my mom will be laid to rest but we have decided it’s best that we start talking about it. We have planned out a weekend full of tough conversations (burial plans, when to call, etc.) and also time to just be together as a family. Quality time is my number one love language but I can’t help feeling like this trip will be a struggle to stay in the moment.

When visiting my family I never know what to expect. I usually will spend some time grieving my mom’s condition and any changes that have taken place since I last saw her. I will have to fight the urge to run away, lock myself in a room and cry under the covers. I hope that instead, I can spend time sitting with my mom, holding her hand while the tears flow.

I’ve been asked a lot this week about how I am feeling about this trip. I can’t help feeling darn mad, like I shouldn’t have to be making burial plans for my mom at age 27. I also feel sick to my stomach thinking about having to plan for my mom’s death. I don’t know how I want to find out and I don’t know where she would want to be buried. This is such an intense way to loose someone you love. The struggle and grief is drawn out for years and it gets worse and worse as you go on.

My goals for this weekend:

1. I want to remain in a constant state of prayer asking for God’s strength and for him to wrap his arm around me and show me all the beauty in the small, seemingly insignificant moments.

2. I will fight to stay in the moment no matter how I am feeling. I will make an effort to be present, real and raw no matter how difficult a conversation might be.

3. I will forgive myself and be patient with my grieving process. I will not be harsh and critical of the feelings that will come up over this weekend.

Dad: How to live through Alzheimer’s

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I received this email and these photos on Monday which sent my feelings pouring out of me. My Dad and I rarely cry when talking to each other because we have to try to be strong but this week I sobbed to him on the phone. We are coming to the end of the road. The end of our journey and the end of our time with my mom. And to be completely honest, we don’t know what to do. Below is an update from my Dad and how he continues to live through Alzheimer’s.

****my dad asked me to proof read this for him and fix any grammatical errors but I think there is beauty in this raw copy. Please forgive any mistakes you may find and understand that this was probably written with wet, foggy, tear filled eyes.

Caregivers are such special people. People that have the endless compassion and the empathy to understand that we all are on the same path, and we all have the same destiny – Sadly some’s destiny reaches the end of the journey before others.

As a Caregiver I learned I needed to dig deep into my mind and heart to find the understanding, find and open the selfless patience, wrap my arms around the meaning of empathy, and most of all confirm my complete acceptance of this is what it is. Make the best of it … Why not ?

Family is so so so affected – Hardest part of this Alzheimer’s Journey is for the Family – After acceptance of that “It is What It Is” The Family must continue on trying to understand how to continue, stay one step ahead of the unknown. Who will step up to the plate and how to be in charge. The reality of deciding what is the best avenue to take for the loved one. I truly believe that the one on one care given by a Family member is the best way to go.

I learned how to try to keep 1 step in front of instead of reacting I keep thinking of how to handle what is coming in the next pages of the book. Being prepared to continue through the chapters of our journey is hardest as the thought process turns toward the time consuming task at hand of taking care of the loved one and leaving little time for the Caregiver day to day needs and cares.

Faith in good sayings have helped me tremendously – I make my own uplifting sayings about this journey that enables me to strive toward them. Gotta love – ” Smiling makes me Smile ” It is so true really I smile driving around all the time. So Blessed – And – ” It is not what happens to you – It is what You do with what happens to you ” Get out of here – That’s one saying for sure to live by.

Country music for me is still and was a great escape for my mind to wander and smile. Most of the Country songs have enjoyable lyrics about quite a few silly life’s situations and are uplifting.

In life I have been Fortunate Not Lucky – The difference is I choose my path by opening doors along the journey. Some doors lead to other doors. Most of the time I didn’t find doors just walls. These walls needed to be climbed or gone around to find the new door on the other side. I always tried to keep moving forward looking forward not in the past. And you have to find the strength and nerves to walk through doors with-out knowing what is beyond.

I am so Blessed by being able to find the resourcefulness, find the ability, let out the ideas instilled in me of keep on dreaming – Dreaming is a very strong way to for me to keep striving and moving on. And accepting that tomorrow will be another great day waiting for me to enjoy this journey.

I have had to file a lot of my memories and learned to go back when I choose to. No need to go through negative times. Uggghhh so hard to go back in the file drawers of memories. Don’t get trapped in the pity party “that these memories are now only mine” because your loved one who helped create and share so many of your life’s memories for so many years doesn’t remember. They can’t laugh, enjoy and share them with you anymore. It gets better in time but will always be there. Shut that file drawer.

Be honest with yourself – This is happening and this is real. So pull up your big boy pants and figure it out so it doesn’t figure you out first. If you get knocked down – dust yourself off and get on with living.

Attitude is self-controlled. I prefer to see the good all around – I made a decision many years ago to be positive, to be proactive and to always keep moving forward … I learned it is easier to live in the now.

You have to learn complete acceptance of “Make the Best of What you Have” and “It is what it is”. This new and always changing journey has no road map. Doctors don’t know – Nobody knows. All I know is that I did the best I could today and will do the best I can do tomorrow. That way you can feel good about yourself.

Sure things don’t always happen as expected but by moving through them with the mind set of “Whatever” you start to understand what really matters in your life. Amazing how that will let the Stress Go – As what is it that really matters in your life.

Get up every day on the right side of the bed … Do the best you can do and then enjoy you did the best you can do – So if what if you only had time to get 25% of it done. That’s 100% of 25% done. Smile and know you did the best you could.

The Responsibility shouldn’t be a burden. Turn your thoughts around and think of how well your loved one is doing. As it really is happening to them not you. Empathy leads to acceptance and acceptance leads to devotion and devotion leads to unconditional love. Unconditional love leads to a much easier journey. This journey is happening, it is real and it is now a major part of your life. Embrace your journey by knowing you would want the same care given to you if you were in this position. With time we all will need the help, empathy and compassion of a Caregiver … Special people indeed.

Caregivers have been chosen for the special job of comfortably helping others transition to the other side of the rainbow. Caregivers are instilled with the love and have found enjoyment by help others.

I have learned when I feel I have way too many things to handle I end up prioritizing and move forward with completing my highest priority items – Because I know I can’t get everything on my shrinking plate done – And then there is what pops or poops up keeping me on my toes and testing my reaction. Ahhh another saying ” Whatever ” I understand the true meaning. Situations happen that are completely out of my control. Could I have done something to change what just happened? If so then learn from it and maybe it was my fault for no thinking ahead to have been able to make it not end up this way. Not feel guilty but learn from it. Really now almost everything washes up – ( well maybe not everything – we can talk later on that ) Most things clean up.

This life journey of yours is not a dress rehearsal – So best way to go is accept, strive to enjoy the ride, look around there is beauty just gotta find it. Smile as smiling will make you smile Come on now smile … Ha see I told you …

I believe in the idea of “Find and focus on the good surrounding you” Good mind set attracts good people. Negative mind set doesn’t attract anything good. Who wants to be around someone who projects poor me, feel bad for me. No one will ever know what you are going through until they have to face the same journey. So get over yourself, your situation. This is not a dress rehearsal. You will never get yesterday back again – So make the best of today. Always Remember:

“It’s not What Happens to You – It’s What You Do with What Happens to you”

Stay steady on the path and look at all the abundant possibilities the Lord has made available for you. I am sorry that this has happened to you. Just you don’t feel sorry it has happened to you and this long Journey will be easier.

John H

Early Signs – How to tell if someone you love has Alzheimer’s

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“…weeping may stay for the night,
but joy comes in the morning.” Pslam 30:5

Something to note is that, each Alzheimer’s patient shows different signs of Alzheimer’s. No case is the same because different parts of the brain deteriorate at different times for different people. The stigma around Alzheimer’s is that you become forgetful and the only symptom is memory loss. Those of us who have witnessed the digression of our loved ones know this is not always the case.

Here are some of the early signs of Alzheimer’s to look out for and my experiences with each of them:

Forgetfulness – not just memories but how to do things that require sequential steps (i.e. making coffee, writing a check)
- My mom was a hair dresser for 29 years. She colored my hair for me since I was 16 and I will never forget sitting in her styling chair, watching her struggle silently to remember the next step in the coloring process. I had enough experience to know that what she was doing was not right and instantly noticed her confusion. This was one of the best memories that I have from the dark times (I refer to the dark times as when my dad and I knew something was wrong but were waiting for answers). It is one of my favorite memories, not because we were spending time together and not because we had great conversation but because I am proud of how I responded in that moment. As soon as I realized something was off I told her “Mom, how about we just shampoo and condition me today and go get some lunch together?” I remember her smile and look of relief. I never mentioned anything to her and I am so glad I didn’t. Instead, I remember trying to relish the feeling of her shampooing my hair, the feeling of my mom taking care of me, recognizing that things were changing and that this may be the last time I experienced either of those feelings. Something inside me told me that the roles might soon be reversed and that I would be taking care of her from now on.
Personality Changes – mood swings and depression are common early signs of Alzheimer’s
- My mom became very reserved and somber during the time we started to notice things. She would often lay in bed crying with my dad telling him, “something is wrong, I feel off.” It might sound weird but I love knowing that my mom was trying to communicate this to my dad. It makes me feel relieved to know that my dad would hold her in bed at night and tell her, “it’s okay, I am going to take care of you and we will figure this out.”
Struggle with time and dates – Not knowing what day it is or how to read a clock
- This symptom was the most alarming to my dad and I. My mom was a huge planner. In our house, we always had a giant calendar filled with dates and activities coming up in the future. Mom couldn’t tell you what day it was when she woke up, nor could she tell you what was happening that day. In the beginning, my dad helped her for a long time by getting her organized for each day at the salon. He would write down her appointments and the times they were at in a clear way that she could understand. Her friend Mary at work helped her handle money at the end of each appointment. Eventually my mom started missing appointments and loosing clients and thats when my dad decided it was time to remove her from work. – Thank you Mary, for being so kind to my mom when everyone else at work would make fun of her.
Difficulty with directions – not reading a map but simple directions like how to get to a best friends house or to work.
- My mom got lost one day driving to her best friend, Margie’s house.
Misplacing things and not being able to retrace steps – when someone without Alzheimer’s looses something they can think back to where they were the last time they had that item and retrace their steps. Someone showing early signs of Alzheimer’s will not be able retrace their steps, becoming easily agitated and suspicious.
- Sadly, a lot of the dark times consisted of my mom suspecting me of stealing her things. She would yell at me and tell me that I stole her purse, makeup, clothes, shoes, etc. It was something different everyday. It broke my heart to watch her become so unbelievably confused to the point where she would blame me for her confusion and often become violent towards me in her state of confused rage. I didn’t sleep well during the dark times because to be completely honest I was afraid of my own mom. She was out of control and unable to predict. I would lay awake at night scared that she would come into my room – I wasn’t scared of her hurting me because I am significantly bigger than her and could defend myself but I would look up at the ceiling hoping she wouldn’t come in my room because I was terrified of her breaking my 17 year old heart even more. I don’t blame my mom, I blame the small tangles at the end of each nerve cell in her brain. The ones that were clumping together killing off my mom’s judgement.
Not knowing where they are or how they got there – Alzheimer’s patients can become confused about where they are and often think they are somewhere entirely incorrect.
- If you are at a stage where you are just beginning to learn about Alzheimer’s, “Sundowners,” is a word to familiarize yourself with. It means – “a person with dementia who becomes increasingly irritable or difficult as the day progresses.” Each night, as the sun went down, my dad and I learned to prepare ourselves for the worst. We could get through each day by gently reminding her what day it was, the time of anything happening that day, and often just relaxing together by watching tv. However, when the sun went down she became substantially more confused and below is exactly why I refer to the dark times as being dark. *deep breath*
- The sun would begin to set and each night she would start off by saying, “I want to go home.” My dad and I would respond calmly by reminding her, “you are home.” She would continue to repeat her phrase and we would continue to repeat ours. Each time she would say it with a little bit more passion than the time before. This cycle would continue until she would pick up her purse and head for the door. My dad and I would do our best to get in-between her and the exit. We knew that if she went outside alone or got in the car to drive, she would end up lost, hurt, or something much worse. We would try to calm her down by saying, “you are home. Look, here is your closet, our dogs, the kitchen.” It didn’t help. Nothing did. She would continue to get more and more aggitated. She would begin using vulgar language, calling us all sorts of horrible names. This would all build up to eventually my dad physically restraining her by holding her back and me trying anything I could to break through to her. I would look her in the eyes and try my hardest to reach in to find her. I knew she was in there behind the confusion, distress and the anger but I couldn’t get through. I remember praying that the neighbors wouldn’t be able to hear the screaming that would go on during these scenes. I can’t imagine what they would have thought was going on. Each night was like a murder scene and all three of us were left lifeless. The match would go on for hours until all of us were in tears and left physically and emotionally exhausted.

Each stage comes and goes with Alzheimer’s. Its similar to raising a baby where each stage is different and is a new challenge. If you are about to go through this or are in the thick of it, I want to encourage you that this will not last forever. That the pain and chaos that surrounds you will eventually fade. Joy always comes in the morning.

ADVICE:

Do not argue with them – Go along with whatever it is they know to be true in the moment. Do not try to argue or reason with them. Be sure that they will not hurt themselves or others but then let them think whatever they want.
Do not take anything they say or do to heart – Alzheimer’s patients sometimes do not know what they are saying or doing and therefore you should try your best to instantly let whatever it is they say or do go. This is easier said than done but I wish someone would have told me to do this while it was all happening. Friends and family members stopped coming to visit because they were offended by something my mom said. Make sure the people around you know that they do not always mean what they say.
Try to enjoy the times they are calm and “with it” – In the beginning we noticed that my mom would be “with it” (meaning able to think freely and acting herself) and then there were times she was “gone” (lost and confused and not acting herself). Hang on to the times they are “with it” and do everything you can to have conversations, ask questions and share memories together.

Amazing Love — John Hamill

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DISCLAIMER: Have tissues nearby!

The following is a four page blog post from my incredible, loving, selfless, and tender father John Hamill. You are the best example of love there is dad. You amaze me more and more each day. Thank you for everything you do for my mom and for me.

These are his tips and tricks of how to care for his wife who has Alzheimer’s.

I really feel the need to reach out and try to help others in our situation – and would love to hear your experiences and ideas too – Thanks for being here … I have been my wife’s caregiver for the past 5 to 6 years, other then having a gal come in for a couple of hours and watch her so I could go out to an appointment for work – Our daughter, who is 23 now, gave me a 3 day break to hit the lake with the good ole boys I went to school with – But ( not complaining – just explaining ) the rest of the time I have been with, and taking care of, my love and life partner Pammy – Through-out this journey I have stumbled many times, I have questioned and have had to pick myself up by the collar and remind myself to always keep moving forward … A while into this journey most of our friends stopped coming by – ” you find out who your friends are ” Now I have come to understand and accept that most of them couldn’t handle seeing my wife so so different and I believe it really hit home for them – made them uncomfortable and wonder if they could handle doing what I have decided to do and go down this long road with their spouse … I can’t blame them or be mad at them as they all have situations and problems of their own and their life to lead and handle …

I try not to go back in time at all – So remembering all of the things I have learned and done to get through this is still there, but behind a closed door … I have gone through her accusing me of having numerous girlfriends ( like I had the time ) I have gone through how to get her to eat, her not sleeping at night, her incontinence – I said to myself, “Oh Lord if I have to go through her peeing in bed, cleaning sheets and the floor at 3 in the morning, and pooping in her panties ( depends ) show me the way I can get through this.” … I learned to put her on the potty 5 to 6 times a day, once for sure before bed and when she wakes up – She is a walker and used to be up quite a bit more throughout the night then – I learned that when she gets up she usually has to pee – so I turn on a few lights and let her walk around and then in a few minutes put her on the potty – I have found that when she is sitting on the toilet it is the best time to get things done – change her pants, her panties, brush her hair, clip her finger and toe nails ( she hates nail clipping and hair brushing ) and put lotion on her legs … I learned that you wipe gals from the front to the back – very important as we don’t want any yeast infections or other problems down there and it is really hard to get near her privates … I cut her depends (diapers) so the waist band is not so wide, more like a bikini, so she won’t get a rash on her tummy. CaRez cream works great to prevent it, if needed, and Sarna Lotion is the best for a rash that there is- Sarna stinks but will take a break out rash down to smooth in minutes – I cut all the depends (diapers) at one sitting and be done for the week and ready … I take a small duffle ” bag of tricks ” with me when we go on outings that has a change of clothes, sandals, wipes, panties, a small blanket, water, and some snacks – I learned that you can take her into the men’s room to go potty – I went into the Ladies room once and that was a bad idea – the guys don’t care but some kinda wonder for a minute then move on …

You will need to learn to not take anything she says to heart … My wife never swore in her life and she sounds like a drunken sailor at times and calls me every name in the book – One of the hardest tasks you will have is when you have just done something good for her and she has no idea what you have done and no appreciation for what you are doing and hates you – Always remember it is not her, it is this awful disease. One of my favorite sayings is, ” This too will Pass ” and it will … I don’t want to come across sounding like an authority on this – I just really want to give back and help others … Let me know to shut up if I get to be too much …

I still catch myself getting mad – every once and awhile I do get mad and can’t handle her anger and meanness – Then feel bad and guilty I got mad and growled … I have learned that you have to indirectly direct – Lead them to what you want them to do – My wife used to break my house plants and pick the flowers ( I figure that was her way of enjoying them ) so I went out to dollar store and got some fake flowers and put them around so she would focus on those and leave the plants alone – It worked for me and she walked around with the fake ones instead – every once and while still doing the plants – Pam used to get into the pantry cupboard and pull things out and stick her fingers in the peanut butter jar and munch – So I turned the labels around facing backwards and put them to the back and sides and then put a little plate of plastic open container with nuts and dried fruit right in the middle – she would go straight to that instead – Indirectly Directing –

My wife is a walker, up all the time – She wouldn’t eat sitting down – So I put a brightly colored dish towel on the counter – making it her place to find food – and put fruit, nuts and juice there … She got used to that was her spot to find food – She ate breakfast, lunch, dinner, and snacks walking and standing, – who cares if she didn’t sit, at least she was eating – the old ” Whatever ,” it doesn’t matter.

– I have found that saying I love you to my wife a bazillion times a day not only helps reaffirm my love for her but she really doesn’t have much to come back at me with – I always ask her to help me to help her when I am doing things – She hates taking off her tops – So I am always asking her for help to help me – consequently she sleeps in what she wears for a few days other then changing her panties and pants. It’s the same LL Bean fleece sweatshirt and top – I try to give her a shower twice a week and that usually is a scene of her tearing up and me asking for her help so I can help her – I always tell her that we are almost done even when we have just begun. I tell her I love her and do a silly little kiss on each cheek and talk french to her which seems to redirect her well as she tries to repeat some words – In the beginning we had to cover up mirrors ( butcher paper and masking tape worked well when we were staying in hotels – other then explaining to the housecleaning folks to leave it up – sheets and push pins at home worked ) we had to take all the family pictures down as she would talk to them and get angry – she would talk to the reflections in the car windows in the garage so I would roll em all down, and then she found the side mirrors – she would get angry at plate glass store fronts walking by so we would walk on that side and block the view the best we could … This too passed as it was just another phase in the journey … I let her start talking in the mirrors again as long as she didn’t get worked up – She still to this day talks, growls, and laughs in the mirror at herself – I have found that Yoga pants are the easiest and cheapest pants for her now ( I still have all her clothes in our storage – not ready to go there yet ) She is a shorty, 5’5″ and at 100lbs has lost a lot of weight, muscle mass, and fat so she needs to stay warm and zip up fleece sweatshirts work well … They have multiple colors and the Yoga pants come in different colors too ( I got sick of having her looking dumpy in her over sized, too big for her, sweats ) Got the Yoga Pants at Essential Apparel on line at like $15.00 each – Only thing is I have to hem em up so I bought a sewing machine at Target. It’s a little time consuming but I measure the inseam, chalk it, and I use a stapler to hold the hem in place then sew em up and cut the long portions of from the inside … She isn’t drinking water as much now so I give her Gatorade to keep her hydrated and she will go through 2 to 3 mid size bottle a day … I took her off all of the psychotropic drugs as they didn’t do Jack for her – Now I have her on one 0.50 milligram of risperdal in the morning for agitation – I took her off that too at one time for about 8 months but she started getting to be an angry elf – I have her on some homeopathic and natural things to keep her on an even keel and can explain them to you when you get there … Pam hasn’t seen a doctor in over a year as she is healthy other then the dementia and AZ … Really all the doctors can tell me is she is progressing – they have no answers to how long, whats next, or what should I do … Seems they just like to prescribe pills – we went through the trying this, and trying that, at the beginning pretty much to no avail … You will know your wife much better then any doctor ever will … I tried taking her to a day care center for AZ folks but she was the youngest one there and was going through the look in the glass reflection angry period – she wouldn’t eat, couldn’t converse, wouldn’t join in groups, and the guys were kinda all over her – So it lasted about 2 months of 2 times a week of me feeling like I needed to go rescue her – It was expensive and I truly believe that the one on one she gets with me is so much better …

PS I ditched the bra a long time ago as that was not gonna happen – blouses with patterns help with nipples as my daughter was always embarrassed when they showed … Using a coffee cup for her Gatorade now easier for her to grip and the Gatorade gives her some more calories … I carb her up pretty good cause she is a walker and used to give her ensure till I read all the crap that is in it … Tried blueberries, coconut oil, walnuts and fish – but Pammy was to far into it to really help – Maybe your wife could benefit from them though …

I had to make our house into a safe house for her – That way she could roam and I didn’t have to get out of bed every time in the middle of the night … I moved the knives to the garage, took the knobs off the stove and oven, and put one up in a cupboard to use when I needed it … She started getting into cupboards so I took the handles off and just opened them from the bottom or the sides. Same with her opening up bedroom doors – I just took the handles off and left one in the linen closet to grab when I needed to get into that room … Took all the drugs and cleaning supplies out of the bathroom and made a cupboard in the garage with a latch for those – It was a good exercise in how many stupid wooden spoons do you really need and why do I keep moving these pans to get to the pans I really use all the time – Get rid of em – make your life less complicated … I kept a journal for months before we sold our house 5 months ago and moved … It helped looking back on her patterns for bowel movements and I rated her 3 to 4 times a day as to how she was dong on my angry scale of 1 to 3 with 1 being the best – That way I could see if the natural items were working for her or not and if I took her off a pill was she okay after a day or two or not effected … kinda abbreviated things as to food, fruit, etc to see if maybe richer foods were effecting her as I still cook – as I was in the restaurant business for years as a cook … More soon…John H

My story

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I grew up in Laguna Niguel, CA. My immediate family consisted of my dad, mom, cousin Sandee and our two mini shelties (Misty and Roxy).

When I was 14 years old my dad and I noticed changes in my mom. We would go out in the backyard and talk about each change we saw. Majority of my input was that she was forgetting to flush the toilet, loosing track of time and not knowing what day it was. My dad had more insight to what might be happening. My mom used to lay in bed with him at night and say “John, I don’t feel right. Something is happening.” Together we noticed she wasn’t as happy as she used to be and was becoming more forgetful. Things like getting lost on her way to her best friend’s house or not knowing what month we were in became normal in our small family of three. Frequent doctor visits just made our family more confused about what was happening to our mom.

Life continued. I was busy being a high school student, volleyball player and frequent beach goer. My dad worked as a real estate appraiser and our two little dogs played in the yard and barked at the mailman.

I started school at Point Loma Nazarene University in 2009. I played on the volleyball team so I had a busy semester. I would often call home to whine about how sore my body was. I was consumed in my new college life and didn’t expect what was soon coming.

When I went home for Christmas break, my dad told me that he had made arrangements for us to go to a class together. I was of course very confused but he assured me that it would be fun. We went to dinner with our cousin Sandee and Aunt Joan. I never asked where my mom was. Some part of me already knew what was happening.

After dinner at CPK we drove up to a tall medical building. We got in the elevator and headed up to the 3rd floor. When we stepped out of the elevator a lady from the Alzheimer’s Association greeted us and said, “I would like to welcome you to the class where you will be learning how to live with someone who has Alzheimer’s.” It was in that exact moment that I learned my mom had been diagnosed with early on-set Alzheimer ’s disease, while I was away at school. My entire body went numb. I had no idea what that meant but I knew it wasn’t good. I don’t remember walking into the classroom or how I sat down in a chair. I never looked at the lady from the Alzheimer’s Association. She delivered the worst news I have ever gotten in my entire life. I couldn’t look at her. In fact, I didn’t make eye contact with anyone in the entire room that night. I starred off at a fake potted plant across the room as she went through her power point of information. I distinctly remember the slide that contained the most hurtful information I have ever heard.

“Alzheimer’s disease is fatal. There is no cure.” blah blah blah

“The average life span after diagnosis is 8 years.”

I didn’t cry in the room. The back of my throat hurt more than it ever has. I was holding back a storm of tears for over an hour.

After we left my dad and I got in the car. I wish I could remember what we talked about. Soon after we arrived at my moms best friends house. We walked in through the open garage and found my mom and her bestie in the kitchen laughing. She was so happy. I’ll never forget hearing her laugh that night. I walked up to her just as a mother would picking up her child from day care and hugged her tight, told her I loved her and asked what she did while they were together.

We never told my mom about the class and we never talked about that night again.

I jumped instantly into the role of my mothers caregiver at age 17. In the beginning that meant reminding her what day it was and going with her to get her nails done. I did my best to hold her hand, tell her I loved her and enjoy the stories she would tell me.

It happened quick. Within a year my mom no longer knew who my dad or I was. It didn’t happen within one day like I feared it would. She gradually forgot us. It made it easier.

I completed my internship with the Alzheimer’s Association during college and after graduation began working as the San Diego Alzheimer’s Association Outreach Coordinator. Working for the Alzheimer’s Association was an amazing platform for me to be able to share my story with thousands of people. Eventually, working it and living it became too much and I decided to leave the Association to start a new career. I am restarting this blog to continue to reach people who are looking support and share my Dad and I’s story.

You will find more details and updates of our journey within this blog.