The Beginning, The Middle or My Now…

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 This post is a submission for Caring Across Generations second #blog4care on Caring for Aging Parents. By sharing our powerful and personal stories, we hope to make a difference and create solutions  to the care crisis, together.

As I pondered on what I wanted to write for this post, the title is appropriate to my thought process. Do I discuss where I was as a caregiver (i.e. the beginning), the middle of that journey or where I am now and you know what I’ll give a little of all.

You see I am on the other side of caregiving, as my mother passed two years ago. I miss my mom terribly and would give anything to have her back, even those crazy, tough and teary caregiving days. Some people who are in the midst of it may say “I under you’re missing your mom, but the caregiving part too?!”

Yep that part too! In my posts I often talked about the tearful nights, mom’s behavior changes, challenges with getting financial assistance for a person who wasn’t rich or poor, lack of sleep and sadness, as I navigated new territory wondering when I’d have time to move forward in my life, because doing anything else other than caring for her and giving her 110% felt like a guilty thing to do. It seemed there was always some obstacle to tackle.  As with anything new, I learned how to manage that life. Caring for mom, making sure she was on a daily routine or making sure that I was on a daily routine rather, keeping up with errands, and taking her to doctor’s appointments became my norm, but also learning how to meet her at her level was a huge step for me.

I often blog about meeting a person with Alzheimer’s at their level because once this really clicks for you, it does give “you” the caregiver a better sense of control. It makes the role easier because you learn not to sweat the small stuff, you learn to make better decisions because you truly realize that no matter how much you want the former person you knew it’s not going to be. You have to find ways to present decisions to them easily that will make them feel engaged and that they feeling that they matter. Basically you make the decisions on the decisions they are going to or going to try to make.

Trying days yes, but now that I’m on the other side of the coin so to speak, it’s been challenging too but in a different way. Two years later and I still cry. I cry for mother and my father. He didn’t have Alz but it’s the emptiness of both parent’s gone. And I struggle with my next. Funny isn’t it. When I was a caregiver, I knew all of the things that I wanted to do when I was able to get mom secure some place and now that I am no longer a caregiver it’s all escaped me. I have new challenges and another new mindset to conquer.

When I see something or do something that I want to share with my mother, it hurts my hear that she is no longer around to share those things with. Holidays aren’t the same, how lost I felt that first Mother’s Day. I tried to get cards for friends and family members and couldn’t do it. Stores where’d I go to get items for mom gave me major anxiety when I’d go in there after she passed. Who knew? No one prepares you for that! I knew there would be a great loss, but I never expected not being able to handle going into a store.

Caring for a loved one with Alzheimer’s is very much like the quote from Forest Gump, “…it’s like a box of chocolate, you never know what you’re going to get”. You get mood swings, the eating challenges, the bathing challenges, and for some, the wandering challenges (thank I didn’t), but you also get times when funny things are said, you learn how to grocery shop quickly, and to think quickly on your feet.

When you’re in the midst of it really is the unknown path. I turned to blogging because I am a writer. I wanted to give a voice to my experience, once I got over feelings of embarrassment and not wanting to relive tough moments with mom, with learning financial systems and so on, but I knew there was a bigger picture, my experiences could help the next person.

I didn’t know where that would lead me, I just hoped someone would read my posts. And someone did and eventually my voice was becoming a bigger voice that started out for Alzheimer’s and is growing to be a big voice for the unsung hero…caregivers.

I don’t know my next, I have a list that I’m ready to conquer. I just hope that I can make a difference in someone else’s life.

To learn about my beginning, click here.

Communication

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When I was caring for my mom, her doctor suggested to start communicating and meeting mom at her level. Initially you think you are meeting your loved one where they are at, but as time goes on you start to realize that giving decisions, words used, tone, how fast you speak, etc. all play into how you communicate with the person who has Alzheimer’s. Communication is how we relate to one another, how we express our needs, desires and perceptions, tone of voice, facial expressions and body language.

As the disease progresses the communication of the person with Alzheimer’s will  face challenges in expressing thoughts and feelings. The person will be unable to understand what is being communicated as well as lose their ability for verbal expression. These challenges can lead to frustration and anticipating these changes and as mentioned learning how to communicate more effectively, i.e. meeting them at their level will allow you to make adjustments and you as the caregiver, family member and/or friend has to learn a great deal of patience.

Here are some problems that you can anticipate to see at different levels:

  • Difficulty finding the right words
  • Using familiar words repeatedly
  • Describing familiar objects rather than calling them by name
  • Easily losing train of thought
  • Difficulty organizing words logically
  • Reverting to speaking a native language
  • Speaking less often
  • Relying on gestures more than speaking

And the best ways for you to communicate is to:

  • Watch your words
  • Call the person by name
  • Use short, simple sentences
  • Speak slowly and distinctly
  • Patiently wait for a response
  • Turn questions into answers
  • Avoid vague answers

These and other great tips can be found on the Alzheimer’s Association’s site as well as how they break down the different stages, mainly three, Early, Middle and Late. To learn more about the stages click on this link, to learn more about communication tips, signs and how-to’s, click on this link.

 

Pamela

Whoa, wait….I’m still here

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Hey Confessioners…hmm, maybe not the best nickname, but followers, friends and fans of  my blog, I am not lost. I have been going through the changes of life, still figuring out what my life is supposed to look like and yet learning, that in God’s time I will learn what my life is supposed to look like.

All in all, I’m sorry I’ve been so distant while thinking about what to write. I used to write about the caregiver life that was so challenging, but I’ve been echoing, that perhaps this post-caregiver life is a tad bit more challenging. I think it’s because not only do I have to deal with death, and all that comes with losing a loved one, but also what comes with re-creating a life from this loss. And while it may be easy for some, it has been more than stressful for me because I had to uproot and transition a lot in the past few years. Things seem to be simmering down, but there is a part of me that is a bit nervous about because I have been transitional, too transitional.

In the meantime, the blog and the caregiver voice it is becoming has been holding its own and I’m getting compliments, as mentioned made the finalist list again with SeniorHomes.com and some new opportunities have been offered to make my blog a stronger voice hopefully. I’ve also had the opportunity to do some volunteering with the Alzheimer’s Association in NYC and will be a Chair of a Committee to later be discussed.

July’s here, summer’s here….it’s 2014 – part deux, and time to ramp up my efforts and blog, blog, blog.

Sending love and patience to all caregivers and remember in the midst of the Alzheimer’s storm to communicate and meet your loved one where they are at. Stay tuned for some great things to do with a person who has Alzheimer’s.

 

Did it again!….SeniorHomes.com 2014 “Top 20 Blog By An Individual”

Thank-you

A very warm-hearted THANK YOU to my friends, fam, and followers who have supported my blog…Confessions of a Master Caregiver got a score of 44 making it again a Top 20 Best Blog by an Individual for 2014.

Thank you to SeniorHomes.com for the honor as I look forward to rocking this year with information!

 

Pamela