Tag Archives: caregivers

a new direction for Across the Land 

After speaking with a freelance brand strategist a few times, and much thought, it became clear to me that Across the Land needed a do over. The change would need to result in a narrower focus that would fit with my current situation. I’m a 24/7 caregiver with limited time and resources.

 Keeping mom safe and maintaining our physical and mental health is my top priority. With that in mind, what can be done that has the highest possibility of positively impacting lives affected by Alzheimer’s disease?

Part of the answer came quick. A young lady in North Georgia spoke these words to me a few years back. “It’s about the caregivers Jack”  After 65 months of raising awareness full time, we agree.

My focus will be on helping caregivers, and my qualifications are limited. In my opinion, the Alzheimer’s Association’s Helpline has great value. Finding ways to get that number in front of caregivers has merit. Getting the number in front of them is a necessity. 

Senior care facilities need to know they are appreciated. Calling or, on occasion, visiting them will be another part of the focus. 

Other activities will be spur of the moment and hopefully will be few. 

My use of social media will continue to evolve. 

P.S. The brand strategist sparked this change. Strength was given to it by some questions a young man in Romania asked me. Thank you Cristian Mihai. 

The Alzheimer’s community – close knit #ENDALZ 

Look at how many pages are out their devoted to supporting Alzheimer’s caregivers. Look at the amazing numbers that follow those pages. Look at the awesome advice given. Their’s a lot of caregivers out there. That’s a lot of empathy. Talk about a group of folks that stick together. This community does that.  

caregivers are all over these neighborhoods #ENDALZ 

According to the numbers the experts are giving us, anytime you drive through any neighborhood in America, you are driving by the home or apartment of an alzheimer’s patient and their caregiver. 

According to the Alzheimer’s Association, more than 1300 new diagnosis of Alzheimer’s disease are made every day in America. 

I’m proud and honored to know a bunch of those folks. 

caregivers can do tough

Yes, caregiving can be tough, but I’m connecting with a lot of folks that are extremely proud of their commitment and their work. As a matter of fact, I’m very honored to do what I do. It’s still tough, but like millions of other caregivers, I can do tough. 

“To care for those who once cared for us is one of the Highest Honors.”     Tia Walker, author

maybe a walk in the woods would be just right

I asked caregivers, what would you do if you had a day off? Of course, when I ask that, a lot of different answers come my way. 

“I would just sit, maybe I would walk around, I dont know, but just being able to relax for a little bit would be a good time for me. I don’t want to go do anything that is noisy and crowded. In fact maybe a walk in the woods alone, would be just right.”

sometimes the help a caregiver gets isn’t what they wished for

I’ve heard a lot of stories concerning this. One caregiver shared this with me. She has been taking care of her father for 6 years and for four years he has needed 24/7 care. Her sister comes once a year for two weeks. During that two weeks the visiting sister wants the 24/7 caregiver there too, just in case. If the 24/7 caregiver tries to discuss anything different, the visiting sister starts talking about not coming anymore. The 24/7 caregiver said this lack of understanding on her sisters part is hard to take, but for two weeks she does have a little help and some company. She feels it is not right, but thinks that trying to discuss it, with her sister, is all she knows how to do to try and effect change, and right now, nothing is changing. 

She thinks it’s best to not cut her nose off to spite her face in this situation. She said she will take what is available and appreciate it, but she knows her sister should be doing much more. 

During that two weeks, the 24/7 caregiver would like to go relax somewhere and do some of the things she used to do. She would like to do some of the things during those two weeks that her sister gets to do 50 weeks a year.

In this situation, I would be as amicable as I could be, but I would be persistent in asking my sister to do more.

what do most 24/7 caregivers tell me they need help with? 

Finding a human being, they feel comfortable with to stand in for them for a few hours. 

Plain and simple. 

a few comments from caregivers that work full time #CGROCK

Mom must be first 

Caregivers must have support in the workplace 

It quickly became apparent that some jobs could not allow me to leave to take care of dad

Assisted living facilities absolutely will call when they need to, even if you are at work

I could feel the resentment from coworkers when I received a call or had to leave, and I understood, but it still seemed to anger me

After awhile, I was told no more phone calls at work and no more leaving

I needed room to breathe, a few kind words, a hug and my paycheck 

did walking down the road help others?

In 2013, I walked 2,594 miles pushing a jogging stroller to raise awareness concerning Alzheimer’s disease.

I had some time yesterday, spare time, so I sat on mom’s deck. A thought came to me, and I decided to pursue it. What value had I provided by walking down the street pushing a jogging stroller? I’m not speaking of any value other than to the person that stopped me to speak of their situation, concerning alzheimer’s, because I walked down the road. 

I pretended as I looked across the street, that a 75 year old lady lived there. She has alzheimer’s. Her 55 year old daughter lives with her and has become a 24/7 caregiver for her mother. The daughter had been, until recently, an employee at Subway. She was a sandwich maker. She was content and she was living her life with plenty of down time to relax and so forth. It was different now, no help to speak of and a mom that needs care 24/7.

In my made up scenario here, the daughter saw a picture of me in the newspaper. She knew I would be walking past her house. She looked out the next day and there I was, walking down her street. She came out and we spoke for about 1/2 hour. A few minutes of the time was spent with her asking questions about my journey, but most of the time was spent with her explaining how hard it was to watch her mom struggle. She shed tears and thanked me “for doing what you are doing.” She told me it was exciting meeting someone doing this. I gave her a card with the phone number of the Alzheimer’s Association 24/7 Helpline on it. I never heard from her or of her again. 

A young couple actually lives across the street, but my made up story, or stories similar to it we’re a regular occurence on my trip across America.

Now, what was my worth to her. Was it in the excitement generated within her for the few minutes following her reading about what I was doing? Was it in the excitement generated within her upon meeting me? Was it in the information contained on the card I gave her? As far as the card goes, I don’t know if she called the number or not, and even if she did, if they were able to help her. Maybe the Alzheimer’s Association helped her with tangible help or by just letting her know she is not alone and that someone cares.

I thought about it. She received kindness, respect and time from me. I’m pretty sure she could see that I was listening and that I cared. Did the excitement of the moment help her get through the day, or any part of the day? Did knowing that others care help? Did knowing that she was in the same boat as millions of others help? 

I’m thinking the answer to that was up to her. 

If someone gives me kindness, respect and time, it helps. If some listens intently and shows what I percieve as a look of concern, it helps. I know if someone gives me information that they think may provide me with some answers, it helps. These things would make me feel cared about, at a time, as a caregiver, that I might feel all alone.

It helps me when folks show me they care about my life, especially when I think that times are tough. 

Yes, we did help folks by walking down that road and it helped me to feel like I might be making someone else’s life better. 

5 ways the church may be able to help caregivers