Tag Archives: caregivers

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.”



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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 

https://ministrytodaymag.com/life/relationships/22555-5-ways-the-church-can-help-caregivers

An article about male caregivers 

From Enlivant 

Here is a link to the article :

http://www.enlivant.com/blog/male-caregivers-visibility-increasing-as-society-changes

More family disagreement #ENDALZ 

Early morning message to me.

“Dad has alzheimer’s. He always asked, even pleaded, that he not be moved to a senior care facility. Mom and dad are alfluent. My brother and I offered help constantly, to the point of moving him to one of our homes. Mom turned down the offers. Dad is in a facility now and mom seems to be having the time of her life.”

At this point, she thanked me for listening, said goodbye and hung up. 

A quote about self pity . . . . . 

“Self pity is easily the most destructive of the non-pharmaceutical narcotics; it is addictive, gives momentary pleasure and separates the victim from reality.”     John Gardner 

Since becoming a caregiver, I have let self pity set my mood on occasion.  I don’t want that. Maybe putting it in the blog will serve as a reminder, not to. I would rather spend my time other ways, with other thoughts.  

But wait a minute. I watched as alzheimer’s ravaged my dad and took him away twice. I have spoken with hundreds of caregivers and observed hundreds of patients. I should be out bungy jumping, riding bulls, climbing mountains and such, but I am a caregiver. Shouldn’t I be able to feel sorry for myself. 

I want to fight those emotions and replace them with action that may help someone through a rough time. I want to keep my mom safe and let her enjoy time. 

One more quote . . . . .  

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have—life itself.” ~Walter Anderson
For now, I like that quote and the feelings from it.

What about awareness? 

I’ve been doing that for 58 months, full time. (raising awareness)

Why?     Probably no entity will spend lots of money and/or time solving a problem they either, don’t know about, or don’t know about the value involved. The value can be financial or emotional, or both.

No one can ever say which awareness raising broke the camels back, so to speak. With that in mind I know that what I do is as important as anything that is done. A lady in Knoxville, Tennessee taught me that. (it also tells you what you do is as important as anything anyone else does)

In the United States a lot of the money for research comes from the federal government. The lawmakers have to be informed, in every way, about the problem. The electorate must be informed also. 

No part of the disease and it’s side affects can be left out. It doesn’t matter how “gross” it is. 

Folks that raise awareness owe it to the patients, the caregivers, the electorate and the lawmakers to talk about it all. The connotation must be serious and reflect the realities. I reject the notion that people raising awareness must sound or look positive. I like the notion of being honest and reflecting that in body language, tonality and content of the spoken word. 

I still run into many, many folks that believe alzheimer’s is only about forgetting. It’s about a lot more than that. 

Google “alzheimer’s” and read. 

Some stuff:

  • Incontinence 
  • Violence
  • Tremendous financial loss
  • Family breakups
  • 66% of folks involved are women 
  • Caregivers no longer being able to afford the medication they need for themselves 
  • Caregivers that must watch a patient 24/7, for years

That’s just to name a few problems associated with alzheimer’s. 

Back to why. My dad died with alzheimer’s, along with millions of other folks. There’s no cure. There’s no proven way to prevent alzheimer’s. It is said that if large amounts of progress is not made soon, by 2050 alzheimer’s could bankrupt our system.

What matters most though is the suffering. Why are we suffering?  What caused alzheimer’s? Why don’t we already know?