Category Archives: caregivers

A message to me about caregiving 

Jack, you have been with your mom since January 24th, 2016. It is to keep her safe. You have been there 91% of that time. (who’s counting) She is almost 89 years old. She does not want to be alone at night. She needs company 5 or 6 times a day and you do not know when that will be. Buddy, you have been extremely loyal to her and the job. Jack, you are luckier than a lot of caregivers, you have family near. They have provided the safety net that other 9% of the time. Lots of caregivers have no help at all. But still you are there, hanging tough, bad attitude and all sometimes, but you are there. 

Jack, you are one of the most persistent men, I have ever known. It’s not going to get easier, but you WILL get stronger. Continue to get up every day, get dressed up and keep her safe. Your man foe, is in your head. Do what you have always done buddy. Keep Going. Don’t let the change get ya down. 

This post is to me, from me. That’s pretty cool huh?

support groups on Facebook 

Over 46,000 folks are members of the 3 groups that I participate in. Each post is from an individual. Dementia is the common ground of the groups. Most posts are from caregivers in various stages of the part of their life, that includes dementia. 

My awareness is raised as I read, not only the posts, but also the comments, to the posts. 

Some comments are about family and friends that no longer call or visit. 

Many of the members no longer have a personal connection to dementia, but stay around to help others. 

On many occasions, I have read problems stated and solutions presented. There is a lot of knowledge spread out among these members. 

maybe there is a reason they don’t call  #ENDALZ 

A call to me this morning: “My best friend stopped calling. It hurt. Being a caregiver has turned me into a complainer. Nobody wants to be near or talk with me. I finally called her yesterday. Her husband informed me, that she has cancer. It’s bad.”

how I raise awareness concerning alzheimer’s 

This has been a process of trying something, evaluating my feelings, and going back for more. My level of acceptance is high, so I am often disappointed in my presentation. After almost 5 years of working at it, I know my approach is important to me, as an individual. That must be addressed. 

I work at letting others approach me. I give them ample reason to. My car, stroller and myself can be easily spotted. Once they approach, I answer any questions or point them in the direction of a possible answer. Sometimes I then ask for permission to hand them a card or a bracelet. Either of those have the Alzheimer’s Association 24/7 Helpline phone number on them.

If enough awareness is raised maybe

  • more of the electorate will see the need to ask Congress for more research funding, and Congress will respond and a cure will be found. 
  • caregivers will know where to go for more knowledge 
  • family members will understand the need to help the primary caregiver 
  • friends of the primary caregiver will understand the need to offer help

Most folks would be amazed at the difference between the awareness level of a primary caregiver and a sibling of the primary caregiver. 

if you need information concerning alzheimers disease 

Take time to call 1.800.272.3900 anytime. The call will be answered by a trained counselor for the Alzheimer’s Association.  

The Alzheimer’s Association has been gathering information since their inception in 1980. 

I’ve used the helpline myself and have set with others, as they made their first call. 

This is what they do, help folks. Everything they do is geared towards helping lighten the callers load, concerning alzheimer’s. 

Please give them a call. If you know someone living with the affects of this horrific disease, please share this number with them:  1.800.272.3900 anytime 

keep her safe, keep my wants at bay and Keep Going 

A Readers Digest version of my situation, as viewed by me. 

  • I work to keep mom safe.
  • I work to keep my wants at bay.
  • I work to maintain good health.

Keeping mom safe is not taxing, just somewhat time consuming. That will slowly change. It will get hard.

Keeping my wants at bay is my big battle. Since January 24th, 2016, I have spent almost 91% of my time on her. The 9% was taken care of by family. I don’t see that changing much. 

It has affected my emotional and physical health. I working to keep that in check. I work in short miles, aerobic and resistance training. Some abb work also. It’s nothing compared to what I did before caregiving. 

I have a choice, to be her caregiver, or not be. I choose “be her caregiver”

I’m thinking their are millions in the same boat, or close, that I’m in. 

Her second time around  . . . . . 

She was a 24/7 caregiver for many years. That changed, when he passed. 

Now she’s back at it again. Yep, she has taken on the caregiver role again. 

– – – – – – – – – – 

This story is repeated many times every day. It’s a tough thing, it seems to me. Wow, to caregive for over 5 or 6 years and then your patient dies. Then, here it comes again. 

We sure need a cure. We need Congress to fund the National Alzheimer’s Plan. 

Phone call from a friend in California  . . . . . 

He called to check on mom and I. This guy and I go back almost 50 years. I’m blogging about this because I realize the huge difference between how I felt before and after his call. It made a world of difference. 

If you know a caregiver, maybe phone them every once in awhile.  

Anyway, Michael, thanks for the call buddy. 

It took time for me to learn what I can do in our battle with Alzheimer’s disease #ENDALZ 

Wow, it took awhile huh? I’ve been disrespectful, arrogant, cocky and just plain mixed up. I have also been extremely helpful. I fell 7 times and got up 8. About me, I have learned, I Persist.

The message from me to caregivers is . . . 

  • If you need help, call the Alzheimer’s Association, and anyone else you can think of.

The message from me to Congress is . . . 

  • Please fund the National Alzheimer’s Plan to meet the objective set for 2025. You passed it unanimously and President Obama signed it into law.

The message from me to the public is . . . 

  • Please take care of yourself. Emotional and Physical fitness are key. Google the “Nun Study”
  • Please ask Congress to fund the National Alzheimer’s Plan so the 2025 projection can become a reality. 
  • If you know a caregiver, please offer help.

He reminded me that it takes a village #ENDALZ 

I caught the tail end of a video yesterday. In it a long distance runner was speaking to a group about his trip across America, on foot. He said “it took a village” to get the job done. 

That statement struck a chord with me. I understand what he means. 

 Caregiving takes a village also. 

Call the Alzheimer’s Association. Ask your family, folks in your neighborhood, your church, newspapers, city hall. Someone may put you onto something that may help. Please ask. 

The young man makes a good point. “It takes a village.”