Monday, April 4, 2016

"C" ~ "A-Z CHALLENGE"


"C"
for
CARE
from
CAREGIVER or CARE PARTNER
{such an important role and responsibility}

This is the most important area currently for me
to learn all I can so I can become a good
CARE 
Partner
with 
Love, Support
and
Companionship
but let's not forget that this person
needs the same from others


I have linked each of the following stages to the best info available from the Alzheimer's Association (AlzA). I will be reading carefully and making notes ... it's alot to take in ... but perhaps one 'stage' at a time will help. 

The Alzheimer's Association has detailed "what to expect"; "your role as a caregiver" and "... concerns" for each stage. When I share, I never want to take the credit or re-do what has already been done so well. Whatever, I do share will be linked to the site and also if it is from another source, it will be done in a box to distinguish as someone else's information. Clearly, I am not the qualified one but the learner as we walk through the A-B-C's of

ALZHEIMER'S
and
CARE



{for now, this is where we are}

For this reason, I am copying from AlzA the "what to expect" portion
for each stage, so I know as I enter the next better what to expect.
For the rest, please follow the link

"In the early stages of Alzheimer's, a person may function independently. He or she may still drive, work and be part of social activities. Your role as care partner is an important one: to provide support and companionship, and help plan for the future." Read more here.

"Early stage" refers to people, irrespective of age, who are diagnosed with Alzheimer's disease or related disorders and are in the beginning stages of the disease. A person in the early stages may experience mild changes in the ability to think and learn, but he or she continues to participate in daily activities and give-and-take dialogue. To others, the person may not appear to have dementia. The early stages of Alzheimer's can last for years." Follow this link to read more. 


The section that I appreciated most was "Your Role as a Caregiver" (which is really what I should have shared here since this is about "Care" and "Caregiving"). However, there is so much information on this, especially in this initial "early stage" that needs to be read, that you and I really need to go to the source and all the many facets as you read to gain more insights. For example under "what to expect", there is a link to "stages of Alzheimer's" and also "life after diagnosis". Both very helpful. But I am sure somewhere through this A-Z challenge, we will encounter some of this great information.

In the section of your role, and pointing out that you may act more like a "care partner" than a "caregiver" because you are there to help, love, support, encourage and at times, you may need to give cues or reminders (which they kindly list 7) to your partner, how the assistance varies, and "no two people experience Alzheimer's" the same. 

Fortunately in our circumstance, there are others living in our home, around and available to my husband as need be. They are involved like a "care team" functioning and weighing-in on what they notice and how they can help or perhaps what may be more helpful for him. All opinions count and matter to provide the best care possible. I am most grateful for this CARE team that surrounds my husband out of love and respect for him. Thank you so much those of you who CARE and are CARING! You make all the difference ... and go far beyond the normal call. I learn much from you all and each of your ways that meet his needs much better than I could alone. I am so thankful that he has you and I treasure your hearts, service and support. You CARE is so inclusive. I do appreciate each of you. 

My husband believes that he's still "got this disease beat" ... (in and of itself, a form of dementia, no?) ... and so far so good. It's healthy resilience and this belief is better seen as a really positive mindset that works in his favor, I pray.  Keeping him active and involved in activities that matter to him seems to work well with the additional medicines that have been added to his other medications. This alone needs to be monitored by others just to be sure he gets all that's needed and does not forget to take care of himself.

Another very important part included on the "Early-stage" was "Early Stage Issues", which covers so many vital details that you are bound to run into or encounter along the way but most definitely you need to know as I did/do.

Middle-Stage Caregiving


"The middle stages of Alzheimer's are typically the longest and can last for many years. As dementia progresses, the person with Alzheimer's will require a greater level of care. During this time, it's important to get the support you need as a caregiver."


"While these changes are difficult for everyone involved, resources are available to help both you and the person with dementia as the disease progresses. There will be challenging days, but there also will be good days. As your relationship with the person with dementia changes, you will find new ways to connect and deepen your bond.During the middle stages of Alzheimer's, damage to the brain can make it difficult to express thoughts and perform routine tasks. You may notice the person with Alzheimer's jumbling words, having trouble dressing, getting frustrated or angry, or acting in unexpected ways, such as refusing to bathe." Read more HERE

Late-Stage Caregiving

"The late stage of Alzheimer's disease may last from several weeks to several years. As the disease advances, intensive, around-the-clock care is usually required."

I avoided sharing more details of this last-stage
as I read briefly and knew 
I was not ready
to accept or deal with this
yet

but
I definitely agree with my role
focusing on the quality of life and dignity

and
I really like that they share ways
how you can express your
CARING
through the senses of
touch, sound, smell, taste, sight

I'm hoping that
COMPANIONSHIP
remains my most precious role
where
PRESENCE
and
CARING
with
COMPASSION
are what
matter most
for both of us


In some ways, I do find it helpful to read
experiences of others like testimonies
so here's one

"A Care Partner's Perspective on Her Husband's Diagnosis"
from the
Alzheimer's Blog
{should have shared this for "B" - lol}

"Quick Tips:
  • Encourage the person with Alzheimer's to continue living as independently as possible.
  • Educate yourself about Alzheimer's and caregiver resources. Use Alzheimer’s Navigator, our free online tool that helps guide you to answers by creating customized action plans.
  • Make legal and financial care decisions for the future.
  • Nurture your relationship by living in and enjoying the moment.
  • Think of ways to complete tasks as a team.
  • Remember there will be good days and bad days.
  • Know that support is available. Other care partners and families affected by early-stage Alzheimer's disease can help you and your family. Contact the Alzheimer's Association to locate a support group."


Read more here


also here's
Some free ebooks available from UK by signing up
on
Home Care
Live-in Care
Living in the Past



2 comments:

Sharon said...

I'm glad that you've focused on caregivers here. The journey of the person with the disease is difficult and trying. But it's also very hard on the ones who have to take care of that person. It can be frustrating, exhausting, and so very sad. Nancy Reagan called it "the long goodbye." I get that. It is an ongoing grieving process, and it's devastating.

I think it's very important to get Care for our loved one, and to also seek Care for ourselves in the caregiving.

GOD BLESS!

shortybear said...

this is very important

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