Mom was not getting out of the car this morning! Today’s Adventure #EndALZ

We all slept in at the Kenny House today! Mom and Dad woke up around 10:30 and I woke up around 11. It was nice to sleep in! We went out to breakfast at our usual spot and ran into some close family friends at Red Star Diner. We joined them and had a nice breakfast; Mom would not share her bacon with me. 😦

When we were leaving the restaurant, we ran into the daughter of my parents other close friends! Funny, how we all go to the same place, all the time. This is normal for the thee families to run into each other at Red Star Diner. 🙂

When we returned home, Mom would not get out of the car. Our family friends came over to check out the new deck that we are having built. Mom sat in the car and would not want to get out. We all tried several times to get her out with many different approaches. Rita even pulled up a chair and sat out by the car with my Mom. They had a nice conversation, but Mom was not getting out of the car. I took out a bottle of water, opened the windows, turned on the air and backed up the car into the shade!

Dad, John and I assembled the new patio furniture for the deck. We had plenty of time, since Mom was not getting out of the car. The good news, all the patio furniture is now assembled.

John (family friend) tried to get my Mom out of the car, one last time. I’m sure we would have continued all day. This was the conversation that worked:

JohnL Sue, I’m here to help you get out of the car
Mom: Okay!
Mom: Richard’s here, Dick’s (My dad) here! They are just to stubborn to help me get out of the car! (we all tried many times over abut an hour)
John: Helped Mom out of car and she walked into the house.

When I walked in, I shut the door behind me and I guess it made a lot of noise. Mom yelled at me for slamming the door! I chuckled! You have to love her!Image

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Powerball up to $600 Million & Mega Millions up to $190 Million; Alzheimer’s research approaching $600 million in annual NIH Funding

Wow! The Powerball is up to $600 Million. The Mega Millions is up to $190 million. How is it that we can have lottery jackpots of this size, but not increase the funding for Alzheimer’s research from millions to billions?

Everyone wants to gamble on becoming a $600 Billionaire; but we are taking the biggest gamble by not raising the stakes for research to find a cure for Alzheimer’s and other Dementias.

By choosing to buy that lottery ticket and not make a donation to a health related charity; you are taking the risk that your Mom, Dad, Aunt, Uncle, Cousin, Brother, Sister, Niece, Nephew, Daughter, Son, best friend or anyone else close to you will get Alzheimer’s.

Please consider making a donation to the Alzheimer’s Association! You also mark your donation for research only on your check. I’m not saying don’y buy that lottery ticket; I’m just asking that you make a matching contribution to charity.

I’m a gambler! I like to go to the casino and I like to buy lottery tickets. I buy $30 worth of tickets every week for the PowerBall and MegaMillions. I buy a few more during weeks that the jackpot exceeds $200 Million. I also like to go to the casino for entertainment. I probably gamble $2,500 a year. I gamble much more on Alzheimer’s research (donations of money and time) to support Alzheimer’s and pray for a cure.

Maybe we need a lottery for Alzheimer’s (or have the two major lotteries start to champion a different cause every month and donate a portion of the proceeds to a health related charity for research only)!

What if the lottery had a rule in place that after it reaches $40 million dollars that 50% of the additional proceeds went to health care research for the top killers. Does someone really need to win $600 million dollars? Really? Money does not buy you happiness!

Would you rather win $600 Million in the lottery or would you rather have your Mom remember that you are her son? I would rather have my Mom remember that I am her son.

So, before you run out and buy that lottery ticket, maybe consider making a donation to a charity for the same amount of money that you are gambling! Pick any charity, but know that the Alzheimer’s Association is the one disease that is not getting its fair share of research dollars and costs this nation more than $200 Billion a year in care costs.

If you would like to donate to the Alzheimer’s Association; you can donate at the following link! http://act.alz.org/goto/RichardKenny

 

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Spreading the word to our future generation of advocates for Alzheimer’s!

A friend of mine reached out to me and asked if I wanted to come to her school and read to her 1st and 2nd grade class. Since I don’t have any children, this was a little bit of a stretch for me, but I said yes. I’m so glad that I did!

My friend talked to the Principal at the New Bedford Academy in Temperance, MI about having me come in a read to her class. The Principal said yes and also turned it into a fundraising campaign to raise money and awareness for Alzheimer’s.

The students were allowed to wear jeans, if they brought in $1 for Alzheimer’s. The students raised $76 and I will match the $76 that they donated.

I sat down and talked with the 1st and 2nd graders about what I do for a living, my support for Alzheimer’s, the importance of reading and I read a book to the students. The book was called “The Dog that Cried Wolf”. It was an enjoyable book to read to the students. They all enjoyed it and laughed along the way. They wanted me to read another book and come back tomorrow. I was asked about every question you could imagine and many that I was not expecting. They asked me if I met the president, if I voted and if I was Rich, since my name was Rich, etc. It was a really cool experience and entertaining.

I was also asked to talk with a group of 7th and 8th graders about Alzheimer’s, the importance of reading and what I do for a living. Three topics that I have no problem talking about.

I started out talking about what I do for a living and what I do to support the Alzheimer’s Association. I also talked about the importance of reading. This group of students asked a lot of questions about everything and had some interesting questions too. They even asked me if I like PB&J, bacon, favorite food, favorite color, favorite book as a kid and now, etc. They also asked me what was Alzheimer’s Disease. I was able to explain the disease, but when I mentioned how it impacted my life, it was a little difficult to talk about. I broke down for a little bit during the conversation, but regained my composure to finish the discussion. They asked a lot of questions about the disease and how it has impacted me.

This was a great experience to talk with the students and raise awareness. I hope they go home and talk to their parents about this disease and continue to raise awareness.

Raising awareness is not always about talking to people that already know about Alzheimer’s disease. It’s also important to talk to people that do not know about Alzheimer’s disease. We also need to start talking to younger people and get their support for Alzheimers disease.

When I asked the 7th and 8th graders if they have ever donated money or time to a charitable cause; the entire class raised their hands. This was really cool to see!

It would be awesome if the National Alzheimer’s Association started a campaign for the month of September to send out millions of advocates to all the public and private schools! The Alzheimer’s Advocates could explain the importance of reading, read a book/part of a book, discuss what they do for a living, discuss Alzheimer’s and how they were impacted by Alzheimer’s. The schools can also ask the students to donate money to wear jeans or something.

We could raise millions and also build our future generation of advocates for Alzheimer’s. We need to get the younger people involved in this cause! This is not a disease that we can ignore or assume that we only need to engage with older Americans as advocates. We need to raise awareness and raise it now.

Almost all the 7th and 8th graders were on Facebook; just think if we could get the youth of America to like the Alzheimer’s Association on Facebook and the Alzheimer’s Association actually shared content with their followers on Facebook.

Let’s End Alzheimer’s! Please also follow me on Twitter at @ALZandDementia #EndALZ

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Mom, Happy Mother’s Day! I Love You! Your Son, Rich

Today is just like any other day; except today is Mother’s Day! My Mom is an amazing Mother and I see it more and more every day. Mom was diagnosed with Alzheimer’s four years ago! I had the privilege to move back home two years ago and live with my parents; I help my Dad care for my Mom.

I could have stayed in Minnesota and come home for holidays. I decided that being close to family was more important and that is why I found a career back in Michigan.

Over the past couple years, I have become closer with my parents. It has been an amazing journey with many ups and downs. We laugh, we smile, we cry, we hug and we have conversations that make no sense to anyone other than my Mom. 🙂 Some of our conversations will repeat 20 times a day and diversion to other topics doesn’t work. Each time we restart the same conversation, I always look for ways to improve my responses.

Mom, Dad and I went out for breakfast to our favorite local restaurant (Red Star Diner). We know all the employees by name and they all know us. I think they all know what we order on a regular basis; anytime we change our order, I think they are shocked and confused. 🙂

Mom had her corsage on this morning (the one she made in the day center).  She seemed happy this morning. We are now home relaxing for the rest of the day. I’m sure we will go out for lunch and dinner.

Today, Mom is Queen in this house! Actually, Mom is queen every day in this house. My Dad has been amazing with caring for his wife.

Happy Mother’s Day! You are an amazing Mother! I will cherish so many memories, before you were diagnosed with this horrible disease; in addition, I will cherish so many memories as you continue to progress with this disease.

Mom is in the late stages of Alzheimer’s and has progressed quickly over the last year. This may be our last Mother’s Day or we could have many more years. You need to cherish every moment you have with your parents (tomorrow, they may no longer be here). You need to make time for your parents; they made time for you, all of your life! If you do not make time for them now; you will regret it after it is too late.

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A recent conversation with Mom

Conversation with Mom:

Mom and I are going on Mom & Son date night. Dad’s attending his Alzheimer’s Support group for Men!

Me: May I take you out to dinner?
Mom: I guess we can, we have to eat!
Me: Can I buy you dinner?
Mom: No, I think we should both pay for our own!
Me: Okay!
Me: Do you want to go to Red Star?
Mom: Do they have good food?
(Please keep in mind, my parents eat there every day)
Me: They have the best food and the employees are really friendly!
Mom: That sounds good to me!
Me: Great!

I went out to the other room to get my shoes and returned to the room with Mom.

Me: Are you ready for dinner?
Mom: When?
Me: Now!
Mom: Okay! Who’s going?
Me: You and me! Is that oaky?
Mom; I guess we can have dinner together!
Me: Good!
Mom: where do you want to go?
Me: Do you want to go to Red Star?
Mom: What is Red Star?
Me: A little diner down the road!
Mom: Do they have good food?
Me: They have great food!
Mom: Where is it?
Me: Down the Road!
Mom: Okay!
Mom: Is Dad going? (Referring to my Dad)
Me: Yes, he will meet us there! (Dad is attending his group meeting and will not be joining us)
Mom: Can Rich go too? (Referring to me)
Me: Yes, he will meet us there!
Mom: Okay! Good!

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Mom has been attending the Day Center now for almost four months

Mom has been attending the day center now for almost four months. We started with two days a week and added a third day a couple months ago. Mom will be going four days a week, starting this week. 

When we first started using the day center; Dad was not comfortable with dropping Mom off, but was okay with picking her up. So, I took Mom in the morning and Dad picked her up in the afternoon. This went on for several weeks. After a few weeks, Dad was okay with dropping Mom off and picking her up. We had a few weeks when Mom was more agitated coming home; Mom thought that Dad was abandoning her when he dropped her off in the morning. I starting taking Mom again for a week, this allowed for some adjustment. Things calmed down and Mom seemed okay with Dad dropping off and picking up again.

My dad was picking her up later in the day and noticed that when she was picked up later in the day, she came home more confused. My Mom did not like being the last one picked up. Mom likes it when Dad comes early to get her. My Dad now goes earlier in the day to pick her up. This seems to have worked out well.

Mom seems to enjoy herself there now! She comes home tired most days, which is a good thing. Mom seems to be adjusting well and enjoying her time. I think Mom believes that she works there and this is something that she enjoys. I also think that Mom enjoys talking to the other ladies there. It’s probably much better than being around my Dad and me all day. 🙂

They also do some arts and crafts there. Mom is proud of her work! 

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I have talked with several members of the team there and they have provided me updates on Mom’s progress. Mom sometimes starts out the day a little confused, but warms up throughout the day.

The team does an amazing job with getting Mom from the entrance of the facility to the day center. I think that this is the one think that makes the transition so much easier for my Mom and Dad.

When Mom started, Mom was like all others that used the day center and it took some time to adjust to the new surroundings. Mom would stand by the door and was ready to go home from minute one. She started participating over time and now enjoys her time there. 

One of the caregivers at the facility reached out to me and said the following:

“I am so very fond of your Mom! Your Mom has made great strides here! She has a great smile, too! I love her sarcasm & dry wit!”

I now know where I get my sarcasm and dry wit from! 🙂

I know several of the team members at the Alzheimer’s Association, Northwest Ohio Chapter. They have all told me that when they are around Mom, she seems to be doing very good in the day center. 

Mom told my Dad the other day that she likes going there. She said that all my friends are there. They use my Dad’s name and my name when talking with Mom, she enjoys that. It’s been good to make a personal connection with the team members.

When we first signed her up for the day center, we completed in intake interview and provided them with all kinds of detail to help with daily conversation. i.e. family information, key conversations, talking points, what she likes and dislikes, etc. I think the intake and personal connection with the team has helped for a successful transition. We have also participated in a care meeting to talk about eating, bathroom, participation, medication, etc.

Dad is taking advantage of the days that my Mom is at the Day Center. He is able to get things done around the house without having to worry about Mom. I hope that he is able to do more fun things in the future too. It would be nice if he starts taking walks, hitting some golf balls or playing a round of golf. I also need to look into some of the day games for the Detroit Tigers or Toledo Mud Hens. My Dad loves baseball and he ordered MLB AtBat so he can watch all the games.

Looking back at the first day that Mom attended the day center (from January 2013)

Today was the first time that we took advantage of the Adult Day Center! I took my Mom there this morning! she seemed happy and ready for the day! I cried when i walked outside! (It could have been the medication she is on to calm her down) 🙂

A friend of mine posted on Facebook that it was like my first day of school. Mom cried when the bus picked me up; I felt the same way today! I cried after I dropped my Mom off at the Adult Day Center!

I think it was hard because in some ways, I feel that I have failed with helping my parents. I know that I’m doing everything that I can, but sometimes I feel that it’s not enough.

I don’t ever want her to resent me for not being able to be there all the time for her. I don’t want her to think that I don’t care and just kicked her to the curb. I never want to put her in a home! I feel like this is a good step to get her out of the house, give my dad a break and give her a chance to interact more with others. I think by leveraging the Adult Day Center, we will be able to keep her at home and give her a great quality of life. I also think it will help reduce my Dad’s stress level.

I know my Dad has been having a hard time with my Mom (24 x 7) being a caregiver.

We are starting with 2 days a week at the adult day center at the Alzheimer’s Association, Northwest Ohio Chapter.

I’m thankful that they have an amazing staff that has made it easier to leave my Mom in their hands. It’s nice to know most of the team; I have been actively involved with the association and on the Board.

Mom seemed happy when I dropped her off! Dad said he did not want to drop her off; it would have been really hard for him. It was hard for me.

I don’t think my Dad knew what to do today! this is the first time that they have really been apart in a long time.

Dad went back to pick her up at 5! She forgot she was there a few minutes later. When she got home, she seemed in good spirits! The good thing; she did not throw her purse at my Dad or me!

🙂

We are going to go again on Friday! I home this helps my Dad get a little break. I also hope that my Mom enjoys the adult day center, activities and meeting other people.

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My friend, Christy S. suffers from an auto immune disease called Sarcoidosis – This is her story

Hello my name is Christy S, I suffer from an auto immune disease called Sarcoidosis. I would like to raise awareness on this horrible disease. April is Sarcoidosis awareness month & I was hoping you guys would be willing to do a small story on this disease. Here is my story…

My name is Christy, I am 32 years old & was diagnosed with Sarcoidosis in Sept of 2009. It has been a very long & tough almost 3 years. It all started on a Saturday morning in May 2009 when I woke with terrible migraine & sinus pressure. So I took some clairtian with no relief, took zyrtec with no relief & benadryl with no relief! It was a holiday weekend so by Tuesday when I called the Dr I was in complete misery by then had a raging migraine for days & was starting to have fevers & horribles ear pain & pressure. Upon going to the Dr it was diagonosed with a simple sinus infection & was given antibiotics. Fast forward 3 antibiotics later when I was still spiking fevers up to 104 plus, headaches, pressure & now nausea & vomiting. I was landed as a direct admit to the Hospital where I was given IV steroids & was seen by an ENT. I was scoped & had testing done to no avail to why I was feeling the way I was. The scope showed significant inflammation but no sign of any infection. My lab works was all out of whack, nothing seemed right yet to the Drs nothing seemed wrong. This continued on well into August, on steroids things got better they took me off things went back to being worse. Nobody understood. I was seeing my PCP & two specialist yet everyone just stared in wonder. I was losing hearing in my left ear, I was dropping weight from not being able to eat, I was constantly asleep because the fevers caused me horrible fatigue. I barely left the house but for Dr appt which were three times a week. I was losing hold on my own life & I didn’t even know why.

 I was finally sent to a Rheumatologist due to such high inflammation markers in my blood work. I was sent for a CT scan of my chest, abdomen & pelvis. It was crushing when the results showed lymphedema in multiple lymph nodes & I was told to prepare for a biopsy & most likely I had Lymphoma. OK prepare myself, for what? Chemo, hair loss, no quality of life? But I was prepared to fight. I heard of this disease & it was very possible to go into remission & percentages were on my side. So after the biopsy my husband & I went to the onclogists office to get the results. Its Sept 25th & I had been in terrible shape since May we were finally going to get an answer & get treatment! So the Dr walks in & says well good news, you don’t have cancer! Now let me explain something that may seem odd. At that point I felt the any weight that had been lifted off my shoulders was dropped back on ten fold. It may seem strange but all I could think of was if I am back at square one & we have no clue what feels like it is killing me from the inside I give up, I cant do this anymore, So quietly & almost tearful I say “ok, well do we know what it is then?” He says Yes scribbles on a piece of paper & hands it to me & says this is what you have go home & google it & you can schedule an appointment with the pulmonologist upstairs, you wont need me anymore. I looked down & saw the word SARCOIDOSIS. What is this? how is it treated? Will I be ok? Why do I need a lung Dr? Will I be able to return to work, I hadn’t worked in almost 6 months! By the time I looked up the Dr was gone & I was left to schedule an appointment for something i know nothing of.

Over the next 6 months I was placed on high dosages of Prednisone & was able to return to work. It was hard though I was still muddling through trying to find my way. I was having “flares” every other week. My PCP sent me back to the rheumatologist that had done the original CT thinking he could help me & coordinate care with the lung dr. I was started on Methotrexate a chemo drug in addition to my prednsione, Dr says the metho will eventually put out the Sarcoid & we can taper off the prednisone. I had such high hopes. Remind you that at this time I was still trying to work full time as a nurse & I was missing a lot of work on & off due to fevers, migraines, nausea & vomiting…”flares”. This was my life for the next year & a half. Have a flare raise the metho dose, start to taper back perdnisone, have a flare raise the metho. We are now at the highest does of metho & I am still on prednisone. I am tired of the back & forth & being sick.
 Its now Feb 2011 nothing is changed I am on a roller coaster that I want off but one morning I wake up with such bad throbbing & burning in my legs & hips. A flu bug seemed to be going around so I took some motrin & tried to sleep it off. Finally after a week I made an appointment with my PCP, he did some lab tests & that afternoon I got a call saying I need to call my Rheumatologist & make an appointment immediately & tell them my CPK is elevated. So of course I know this means I am having either inflammation in my skeletal muscles or deterioration of them, I don’t take any meds that could cause this I checked with pharmacy. So I go into my appointment & now all of a sudden this isn’t Sarcoid causing the pain because I have never had these symptoms before. Now I was diagnosed with Fibromyalgia on top of Sarc. Sigh. I try my best over the next 6 months to work & function as well as possible but I am in pain & my Dr doesn’t seem to care. We tried Fibro meds & I still continue to have such severe pain. Now I have been unable to work Since November 2011, I can’t seem to stand or walk for more than 30-45min without my legs feeling like I ran a marathon. I have now lost 100 lbs from the nausea & drs don’t care because I could stand to lose the weight & I have pain nobody seems to know anything about….
This all brings us to December 2011 my PCP decided it was time to find alternative help. He’s trying different meds still so far with no relief. He’s trying to calm my anxiety & now I am fighting some major depression. I am happy to tell you I got accepted at Cleveland Clinics Sarcoidosis Center & have an upcoming appointment in Feb. Even though knowing I will be seen by some the best drs I am still sad & anxious.

It is now Feb of 2013& not much has changed. My specialist at Cleveland are doing the very best they can. Although my body continues to fight all the treatment we try. The disease has now spread to my nerves, skin & kidneys. I have not been able to work in a year & a half, I get infusions every three weeks & take up to 24 pills a day. My life has been torn apart, I am no longer the same person I once was. I can’t function everyday like everyone else & nobody seems to really understand. I don’t mean I don’t have wonderful love & support because I do but this disease has made me feel like I barely exist anymore. This is not just a disease that goes away on its own or some steroid treatment for a few months, this is serious & needs so much more attention then it receives. Thank you for listening to my story even though I don’t know where my path may lead I will fight with as much strength & integrity as I can but in the end all I want is my life back…..

Christy S.

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