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Is It Time for a Care Facility?

 

That’s the Constant Question

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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.

An abundant array of choice words.

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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.

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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.

Soul-searching realization

 

 

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My Friend Has Alzheimer’s

Feelings Still Remain

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.

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Going Off Topic

Blogging Sounds So Easy

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.

Partners in Frustration

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.blog 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.blog console2

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.

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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.

ADD Get Back on Topic

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.

Help Wanted

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.

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Volunteers Needed for Clinical Trials

Looking To the Population for a Cure

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.

TrialMatch

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.

Early Detection Required

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

Long-term Commitment

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

Link to TrialMatch https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/about-clinical-trials

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Blood Pressure and Dementia

Dementia is a Young Person Disease

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

https://www.cbsnews.com/video/research-finds-link-between-blood-pressure-and-dementia/

Heart health=total health

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Mom’s Clutter

 Is It a Reason For Concern?

Your mom’s house was always clean but not spotless. There was a stack of magazines here and a pile of mail there.  As she got older you noticed the clutter seemed to take over. She would have ten bottles of dish soap under the sink. Plastic food containers piled on the counter. Plastic shopping bags overflowing on to the floor. Boxes, empty boxes stacked high in the living room. One day when the two of you were out to eat, you noticed her putting a handful of sugar packets into her purse. When you got back to her house you watched her put the sugar packets in a drawer in the kitchen. Waiting for your mom to leave the room, you opened the drawer to find it full of sugar, salt, and pepper packets.  So you open another drawer. This one was is full of used zip bags and crumpled up aluminum foil. She’s never done this before. What is going on?

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It’s not uncommon for people in the early to middle stages of Alzheimer’s to start accumulating excessive clutter. They may be experiencing a decreased ability to sort junk mail from the important mail. They may be forgetting they already have certain items at home and buy more. They may have an overall confusion about what to do with all this extra stuff. If the person lives alone these little changes can be easily overlooked.

Remember there is a reason for every action. Maybe they realize their memory is failing. As their short-term memory fails, their long-term memory may flood their mind. Memories of the Depression or wartime rations come to the surface. Triggering the need to save everyday items in case they become scarce. At their age, people they have known for a very long time are starting to pass away.  Loneliness and anxiety may begin to fill their life. How would you feel if your world felt like it was crumbling beneath your feet?  Sounds terrifying to me.

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Be compassionate. Remember they have no control over what Dementia is doing to them. They may resist the idea of decluttering. So, pick your battles. Is the clutter harmful to them? If no, then simply monitor what they are accumulating.  When the time comes to thin out their stash, get someone to help distract them with a tempting activity. Time for a trip to McDonald’s for a milkshake.

The Beginning of a Long Journey

Remember they are confused and overwhelmed by these changes. Be supportive and stay positive. It’s the beginning of a long journey. You will need to pace yourself and conserve your energy. This would be a good time to confide in friends and family members. Find support through others who have already struggled through and survived. With enough support, you too can survive and in return help others who are also walking this difficult path.

 

 

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Why Women

Lack of Estrogen May Play A Role In Women and Alzheimer’s

Prior to my wife being diagnosed with dementia, and later it was confirmed to be Alzheimer’s. I knew very little about this cruel thief. A thief that slowly robs a person of their very existence. First, it injects confusion into their minds. Forgetting appointments, recent conversations, where they placed common items. Like keys, eyeglasses, eye contact cases, personal items like combs and hair brushes.

EarlyAlzMeme

Alzheimer’s a slow thief

 

Then it continues to pilfer their ability to remember common everyday facts. Like what day, month or year it is. How to follow basic instructions, both verbal and written.  Followed by stealing their ability to perform simple math. The disease slowly steals their brain. The brain actually shrinks becoming a fraction of what it was prior to taking up residence within a living soul.Brain Image

I was a reluctant student this was not a subject that I wanted to study

I have come to learn more than I ever wanted to know about this disease. One is that it disproportionally affects women more than men. Some of the factors are only starting to be understood.

Estrogen or the lack thereof may play a big part in why it targets women. I have been researching for a couple of weeks about hysterectomy’s and how that may play a role. Especially if the ovaries are removed. It appears that if a woman has an oophorectomy (oh-of-uh-REK-tuh-me). Which is the surgical procedure to remove one or both of their ovaries. A woman’s likelihood of Alzheimer’s rises considerably and the younger the greater their likelihood of being struck.

More Research Needed

I am continuing to research this topic and will write about it more in the future. What called me to the keyboard this morning was a short segment on CBS This Morning, about women and childbirth. Once again it mentions the production of estrogen or lack of production. Childbirth may actually lower the risk of Alzheimer’s.

Here is a link to the CBS segment

https://www.cbsnews.com/video/motherhood-could-play-a-role-in-alzheimers-risk-new-research-says/

 

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MedicAlert + Safe Return

Help For Locating Lost Alzheimers Suffers

MedicAlert® + Alzheimer’s Association Safe Return® is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or related dementia who wander or have a medical emergency. We provide 24-hour assistance, no matter when or where the person is reported missing.

6 out of 10 people with dementia will wander and become lost

How it works

If an individual with Alzheimer’s or related dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line (800.625.3780) to report it.

To read the full article click on the link below.

Source: MedicAlert + Safe Return

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Disaster Preparedness for Alzheimer’s Caregivers

Disaster Preparedness for Alzheimer’s Caregivers

People with Alzheimer’s disease can be especially vulnerable during disasters such as severe weather, fires, floods, earthquakes, and other emergency situations. It is important for caregivers to have a disaster plan that includes the special needs of people with Alzheimer’s, whose impairments in memory and reasoning severely limit their ability to act appropriately in crises.Flooded road time

In general, you should prepare to meet the needs of your family for 3 to 7 days, including having supplies and backup options if you lose basic services such as water or electricity. Organizations such as the Federal Emergency Management Agency (FEMA) and the American Red Cross provide information about making a general disaster preparedness plan.

Gather Supplies

As you assemble supplies for your family’s disaster kit, consider the needs of the person with Alzheimer’s. Be sure to store all supplies in a watertight container. The kit might contain:

Other supplies you may need are:

  • Warm clothing and sturdy shoes
  • Spare eyeglasses and hearing-aid batteries
  • Medications
  • Flashlights and extra batteries

If You Must Leave Home

In some situations, you may decide to “ride out” a natural disaster at home. In others, you may need to move to a safer place, like a community shelter or someone’s home. Relocation may make the person with Alzheimer’s very anxious. Be sensitive to his or her emotions. Stay close, offer your hand, or give the person reassuring hugs.

To plan for an evacuation:

  • Know how to get to the nearest emergency shelters.
  • If you don’t drive or driving is dangerous, arrange for someone to transport your group.
  • Make sure the person with Alzheimer’s wears an ID bracelet.
  • Take both general supplies and your Alzheimer’s emergency kit.
  • Pack familiar, comforting items. If possible, plan to take along the household pet.
  • Save emergency numbers in your cell phone, and keep it charged.
  • Plan to keep neighbors, friends, and family informed about your location.
  • If conditions are noisy or chaotic, try to find a quieter place.

If You Are Separated

It’s very important to stay with a person with Alzheimer’s in a disaster. Do not count on the person to stay in one place while you go to get help. However, the unexpected can happen, so it is a good idea to plan for possible separation:

  • Enroll the person in the MedicAlert® + Alzheimer’s Association Safe Return® Program—an identification and support service for people who may become lost.
  • Prepare for wandering. Place labels in garments to aid in identification. Keep an article of the person’s clothing in a plastic bag to help dogs find him or her.
  • Identify specific neighbors or nearby family and friends who would be willing to help in a crisis. Make a plan of action with them should the person with Alzheimer’s be unattended during a crisis. Tell neighbors about the person’s specific disabilities, including the inability to follow complex instructions, memory loss, impaired judgment, disorientation, and confusion. Give examples of simple one-step instructions that the person may be able to follow.
  • Give someone you trust a house key and a list of emergency phone numbers.
  • Provide local police and emergency services with photos of the person with Alzheimer’s and copies of his or her medical documents, so they are aware of the person’s needs.

Source: Disaster Preparedness for Alzheimer’s Caregivers

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