Share Your Story
Friendship Is Important
Music and Memories
The middle of July through the end of the year is a difficult time for my family and me. We are reminded that the world continues to spin and time keeps moving forward even after a great loss. Although this difficult time does not directly pertain to Alzheimer’s and Dementia it may hit home with some of you. My thoughts are unorganized and the words don’t flow smoothly together. My lack of focus can leave my mind foggy and my body exhausted. I guess grief can do that to you.
Experts say there are seven stages of grief. I’ve found that these stages do not go in any particular order and are often repeated. These stages are Shock and Disbelief, Denial, Pain, Anger, Bargaining, Depression and Acceptance/Hope. There are also different types of losses that we grieve. Of course, the loss of a Loved One to death’s door is the one most people associate with grief. Some other losses we mourn are Loss of Relationships, Employment, and Health.
Grief is exhausting and can become very overwhelming. I’ve learned that you need to feel your feelings and talk about them. As painful as that may sound, and it is painful, you have to give space to them. If not, that emotion will begin to fester and intensify until the blister finally pops. Leaving an uncontrollable ooze of negativity that can push you into a very dark place.
In that first year of my journey with grief, I stuffed my many painful emotions into a “closet”. Struggling every day to keep those “monsters” hidden behind that bulging “closet door”. I was so very afraid to confront those monstrosities of soul-shattering pain. I was using all my strength and every ounce of energy to forcefully keep that “door” shut. I found myself in a very dark place. I was very fortunate to find a safe place to allow those “monsters” out of the “closet” and talk about my shattered heart, lost hope and disappearing dreams.
The old adage “Time heals all wounds”, is not completely true for me. Time does not heal all wounds. Even when the wounds appear to heal, there are scars left behind. These scars are a reminder of our brokenness and the strength it took to gather those pieces and put ourselves back together. Time does not heal, but using that time to learn to feel our feelings does somewhat in time ease the pain just a little. This allows us to cope with these scars without allowing them to define who we are.
Grief is difficult. Give yourself permission to talk about it. Talking about it takes away its power to consume you. Don’t let grief guide your path. Find a comfortable balance that allows grief to walk with you through this thing we call life.
When you are fortunate enough to be able to care for your Loved One Living with Alzheimer’s at home ….. There is a constant question looming over your head. How will you know when it’s time to place your loved one in a facility? This is a very sensitive question for most people and the answer does not come easily. My family needed to face that question about a year and a half into caring for Gram at home.
In the beginning, we had several family members and some trusted people from the community to help Gram stay at home. Gram had a sum of money in the bank and we were able to secure a grant from the county and state to help pay them. Acquiring that grant is a whole other story. In-home care is expensive, especially when supervision is required 24/7. Of course, then there’s the challenge of maintaining a caregiving schedule and balancing our own jobs and families. At first, it was an exciting challenge that we met head-on. Then the excitement wore off and we were just left with challenges. Do not get me wrong, I feel blessed to have been able to spend that time with my Gram. But it was not an easy task.
Gram didn’t like a couple of the caregivers and she did not hide her dislike for them. There was many an occasion that she had an abundant array of choice words for her family too. My thought is that it comes with the territory. Being her granddaughter….. I felt I could approach the situation a little differently than I would if I were a nonrelated caregiver by being assertive and straightforward. My Gram referred to me as the “Bossy Redheaded B*tch”. Which to this day I proudly shoulder with a smile. Others were not able to separate the nasty name-calling and meanness from the Gram we knew. So, our help became scarce and volunteers were not knocking down our doors to expose themselves to this side of our beloved Gram. A very wonderful handful of caregivers did stick around and became “family”.
Wonderful handful of caregivers
Eventually, money became tight and the caregivers who choose to be private pay had to take a pay cut. Our family began to cover more shifts. Also, the county and state grant payee company lost their contract and we were faced with a several weeks delay of payment for the hours allotted for our loyal caregivers. It seemed as though this whole thing was falling apart. Our family began silently holding in grudges. Then the silence was broken and feelings got hurt. We began looking for facilities. I will leave this struggle for another story.
So for Gram’s family, the decision came down to finances. Looking back, there are quite a few things we should have done differently. But we were new to this struggle and did the best we could do at that time. There are no magical keys to this aspect of caring for a loved one with Alzheimer’s or Dementia. Other families face this decision under different circumstances. Some may be confronted by the primary caregiver becoming ill or emotional exhaustion may set in. Whatever leads these families to decide to place their loved one in a facility, it is not an easy decision. It comes down to a very over thought, emotional, personal soul-searching realization that it is finally time to put their loved one in the hands of someone else.
I’ve watched my friend change, but remain the same.
Her feelings take control since her thoughts are now fragmented and lost.
She laughs when she’s happy.
She cries when she’s sad.
She becomes angry when she feels threatened.
She feels confused when her life does not make sense.
So, I laugh with her.
I cry with her.
I give her space when she needs it.
I reassure her when she feels out of place.
Though our time together has changed, the feelings of friendship remain the same.
Blogging can sometimes be difficult. Especially when you are slightly ADD and suffer from dyslexia. We are attempting to come up with weekly topics and create articles and memes around those topics. Sounds easy enough, but not so when I start staring at the keyboard. I have a general idea of what I want to do in my head. Then I try to put it into a meaningful structure that can be understood by our readers. More end up in the hyperspace trash bin than onto the internet blog space.
My blogging partner Kim had asked me this weekend to look at some articles she had started that were in edit mode. For those that are not familiar with blogging here is a screenshot of part of our blogging console.
It shows how many are published, how many drafts are unpublished, and how many are trashed. Trashed here is the digital equivalent of wadding it up and tossing it at the trashcan. It is still there just not on your desktop in your face. It can be permitted deleted = shredding. Or we can restore it the digital equivalent of smoothing the wrinkles out on the paper on top of the desk.
In my case more go to the shredder than make it to the World Wide Web. Another thing for me is a lot of my articles never make it to the blogger draft console. They are still scattered across various avenues that I travel. Two computers, desktop, and laptop, then there is the tablet which is almost always with me, but the tablet is the hardest for me to compose a meaningful post on.
I often start with a simple outline of one line ideas saved in Microsoft Word or Google Docs. This is where the ADD causes issues. What format did I use? If it was word what did I name it and where did I save it. The default should be Microsoft One Drive (The Cloud). If the format was Google Docs which account was I logged into (I have 6 Gmail accounts) between personal accounts, blogging accounts, and business accounts. I try to stay logged into my main personal account but sometimes I am forced to log out of that account and to log into another account. Which account did I save it to and what did I name the file. That is not always so bad, sometimes I come across those old notes and I am off and running on something to write. Other time they are trashed during housekeeping they are just clutter taking up space.
Oh, back to Kim she had asked me this past weekend to look at some of the blogs she had in the draft. Well, three days later I looked and nothing. Found them in the trash. WHAT. She is home not feeling well today, but the jerk-in-me sent her a chat message anyway. Yes, she intended to wad them up and toss in frustration to the digital waste pile, okay I’ll leave them but I did not send them to the digital shredder.
For every word, on this blog, every meme The Meme Queen creates. They are created out of experiences, frustration, feeling, tears, anger, happiness, and laughter.
We are shearing heartfelt life experiences there are stories behind the stories. Not sure if we will ever be able to share all of the tears.
If you would like to help us we are looking for contributor’s people with a story or stories to tell and editors and editor and contribute proofread and correct articles.
I was reading an article the other night in bed that was addressing the monumental need for volunteers that are needed for clinical trials for dementia and Alzheimer’s treatment. I am sorry but I can not locate the article but felt the need to write about it today. I will paraphrase as best I can and will be writing more about this need in the future.
The general jest of the article was most of the current studies will never materialize because there are not enough volunteers. Because tens of thousands of volunteers are needed to fill a few thousand suitable participants. That by itself does not sound so bad. However, that is for one study not the hundreds of studies that are looking for a cure.
The first key is to apply to participate. The Alzheimer’s Association has what they call TrialMatch, this is a starting point to volunteer. I will repost this link at the end of the post.
The next problem is that so often dementia and Alzheimer’s is not identified until the later stages of the disease. When the person is forgetting so much they can no longer perform everyday tasks. We have to get willing participants in sooner not later, in the progression of the disease. Some early warning signs are misplacing everyday items on a regular basis, not being able to retrace their steps and actions. then finding the items in bizarre places. Forgetting recent conversations, appointments. Here is a link to 10 early signs by the Alzheimers Association. Memory loss and 10 early signs
These are long-term studies they require a commitment, not just the participant but also an observer, generally a family caregiver. Who can document how the participant is doing, making sure that they are following the instructions, and driving them to their appointments. This brings up another sad fact over 50% of the caregivers pass away before the PLWD. These are long-term trials, not years but decades in some cases.
I found the original story that inspired this –post https://www.nytimes.com/2018/07/23/health/alzheimers-treatments-trials.html
Link to early detection https://www.alz.org/alzheimers-dementia/10_signs
If you have followed me much you have heard me use the expression ‘What is Good for the Heart is Good for the Brain’.
Once again there is a tie linking what is ‘good for the heart is good for the brain’. You may be able to lower your risk of dementia by lowering your blood pressure. By lowering the top number, systolic pressure below 120 may reduce the risk of dementia by 19%
This is but one possible key to help in reducing dementia.
click on the link below to watch the short CBS News clip