Physical Touch and Dementia

Source: Physical Touch and Dementia

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Caregiving Independence vs. Interdependence

After an amazing sermon at my church this past Sunday on independence and interdependence it dawned on me that this information really applies to a Caregiver.

Independence is when you think you don’t need anyone; you can do this alone. Interdependence is knowing you cannot do this alone. Recognize it’s better for you as the caregiver to shake off the pride and let others help you in whatever way they can.

Independence can cause arguments because you won’t give up the idea you actually do need all the help you can get. When family or friends offer and you keep turning them down they might get a little angry at the fact you won’t let them be one of your caregiving rescuers.

Why do caregivers do that? I did it in my early years of caregiving. It wasn’t that I thought I was Superwoman, but I didn’t feel right asking other people to step into my world and experience the turmoil I was going through. Dumb! Really dumb!!

What is your family for if not to help you in times of need? What are your real friends for if not to step in and give you some respite time?

There are no “heroes ” in any of this.

There has to be interdependence to make it through the days, weeks, months and years as a caregiver. Interdependence is having faith that these people offering their help will indeed be your angels, your saving grace.

Why would a caregiver turn down another set of hands to help with the every day chores that are piling up because you’re running your loved one to doctor’s appointments?

Why in the world would you turn down the opportunity to actually have some quiet time to yourself?

When was the last time you were able to take a nice long walk and not worry about your loved one? And when was the last time you were able to take a nice long bath or shower without any interruptions?

Start to re-evaluate your situation. If you have family and friends who offer to help out, start saying “yes” to them. If you don’t have family or friends that are able to be of help, then talk to someone in the healthcare field, they can direct you to the right sources.

Let interdependence be part of your “new” thinking. You won’t regret it.

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To Helen With Love

I am happy to announce that my memoir, To Helen With Love, is finally published!

After five years in the making, this has been one of the most intense endeavors I’ve ever taken on, but well worth it.

While I was writing this memoir I discovered how much pain I still had deep inside of me. Pain from some of the experiences. Pain from not knowing what or how to deal with dementia. Pain of not understanding what caregiving entails. Pain from dealing with the healthcare field. Finally, pain when it’s all over.

Many times through my caregiving years I felt lonely inside. Even after my Mother’s death I felt loneliness. You know what I mean if you are a Caregiver or have been one. Even though I was surrounded by family and people I loved, there was still a sense of loneliness.

Pouring through my journals to capture information for my memoir was like going back in time and reliving the experiences. Some of my entries were humorous and other entries were screaming “help, I don’t understand”.  Still others were filled with sadness and torment. I even found myself in tears while typing the manuscript! I began to realize I wasn’t “done” with my grieving, not even close. That’s when I discovered I had not had any closure after the death of my Mother.

Writing this memoir may have taken me through all those emotions from beginning to end again, but it also gave me closure. I had no idea how much I needed that.

Personally, I don’t believe we ever truly “get over” the death of someone we love, we just learn to accept it; we never really forget. My loved ones are still close to my heart.

My intention for writing this memoir is to help other caregivers know they are not alone in their journey. To let them know it’s an ongoing learning experience all the way to the end. There’s no magic wand to free up the pain and sacrificing a caregiver deals with.

In my personal experience, my faith was my saving grace throughout my caregiving years. The Lord carried me through some rough turbulent seas, without Him I would have drowned.

A scripture that came to me during the writing of my memoir, and is included inside the book is:

“Weeping may remain for a night, but rejoicing comes in the morning.”Psalm 30:5

I do hope, if you decide to read my memoir, you will find comfort and hope.

Where to find To Helen With Love:

http://www.xulonpress.com/bookstore/bookdetail.php?PB_ISBN=9781498492812&HC_ISBN=, Amazon and Barnes and Noble

 

Caregiving and Suffering-Is There A Connection?

The answer to the above question is a resounding: YES!

Have you ever met a caregiver who wasn’t in some kind of pain; emotional or physical? It is what happens when you are the caregiver of a loved one.

As I was thinking about this today, I immediately saw the connection with what Jesus was having to endure. This is Holy Week. Sunday we celebrate the Resurrection of our Lord Jesus Christ. Look at what Jesus endured the last days of His life. He is, and always has been, our Primary Caregiver. No one has suffered more as a human being than Christ did for us. He had emotional and physical pain that none of us can possibly fathom in this day and time. Yet, Jesus endured that suffering. He prayed constantly to His Father in heaven.

During my time as a primary caregiver, I too, prayed to my Heavenly Father for endurance, strength, patience, love, understanding, guidance, trust and faith. Did it work? Absolutely! I believe with all of my heart there is no way I could have made it through each and every day without the strength of Jesus. He never said life would be easy and carefree. But He did show me that relying on Him for everything would help me to persevere through some of the most challenging times.

My hope and prayer for those of your who are caregivers, is to turn towards Jesus and ask for His help. He will not disappoint you. Then get down on your knees and thank Him for the opportunity for which He called you. YOU are special. YOU were handpicked to serve as a Caregiver for someone you love. That’s a calling my friends.

2 Thessalonians 1:11 says it best:

“With this in mind, we constantly pray for you, that our God may count you worthy of His calling, and that by His power He may fulfill every good purpose of yours and every act prompted by your faith.” (Emphasis in bold are mine)

Caregiving A Second Time Around

It’s been quite some time since I posted anything on this blog. So much has happened in the last month that has taken me on another caregiving path.

On November 28, 2016 the nightmare of my life would begin. My sister and her family were vacationing in the Smoky Mountains when fires broke out. They were evacuating when it became evident that they were not going to be able to escape this horrific disaster.

My three adult nephews reluctantly left their parents at the insistence of their mom and dad. Miraculously, all three young men escaped. . .their parents perished in the fire.

The three brothers were transported to Vanderbilt Burn Center in critical but stable condition. On November 29th when I was notified of this disaster and not knowing if my sister and her husband were alive, I took the first flight to Nashville with my three daughters.  That’s when my new caregiving role began.

I love my nephews af if they were my own children. I had no reservations about going to be by their side and letting them know I would not leave them. I assured them I would care for them no matter how long it would take.

Another young woman who was like a daughter to my sister and husband, and very close to these young men joined with me as their primary caregivers once they were released from the hospital.

No one ever expects to become a caregiver of any kind, but life throws us curve balls all of the time. You step up to the plate and do what needs to be done.

Learning a new kind of caregiving was in store for me and the other young lady. We had to learn how to properly provide wound care. This is something I never thought I could do or would even be in a position to do. But with the good Lord’s help and this wonderful woman by my side, we both were able to care for these young men in the best possible way.

In many of my past posts I say how taxing and draining caregiving can be. I have to admit I was running on adrenaline most of the time not giving in to being tired or drained. My nephews needed special attention and primo care; I wasn’t about to let that change and neither was the woman who was in this with me. We were on a mission – to get these young men well and make sure they continued to heal in more ways than one.

I’m very happy to say that all three of these guys are healing beautifully and although they, and us, know it will be a long road before the emotional side heals, we’re still in this together helping one another through the healing process.

It seems I’m supposed to be a Caregiver in this lifetime of mine. If that is what the Lord has deemed me to be, who am I to argue with Him?

Once, again, I’m proud to be able to care for those I love so deeply.

Sundowning

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I don’t know about you, but the time change of going back one hour takes me about a week to get use to. Who made the decision to “spring” forward and “fall” back any way?

If you think it might be hard on us, think about those individuals with Alzheimer’s and other dementias.

As the sun begins to set and darkness creeps in, a person with dementia has a very hard time adapting. This is what is referred to as “sundowning”.

Doctors and scientists aren’t exactly sure why this happens to people with Alzheimer’s and dementia, but they do have some theories. They think the changes in the brain of someone with dementia or Alzheimer’s may affect their inner body clock. This is an area of the brain that controls when you sleep and when you’re awake; this begins to breakdown as the dementia or Alzheimer’s progresses.

Here are some common behaviors with sundowning:

  • Agitation
  • Disoriented
  • Irritation
  • Suspicious
  • Confusion
  • Demanding

The person might begin to yell, pace or even hallucinate. All of this is part of sundowning.

Be aware of all the different things that can cause your loved one to experience sundowning. As the light begins to fade there are more shadows which can create fear and confusion. They have a hard time knowing what’s a dream and what’s reality. Reassure, never argue or try to reason…it won’t work. Use a calm voice and keep the noise level down. Soft music is a great tool to soothe someone.

If you’ve been with your loved one all day and you begin tiring or become irritable, your loved one will pick up on your emotions and before you know it, they are mirroring you! Yes, caregivers are likely to become annoyed at the end of the day because they are worn out and need some rest. That’s the time to “call it a day”. If you live with your loved one, have someone else relieve you so you can get some sleep/rest. If your loved one lives in a facility, it’s time for you to go home for the night.

Just remember, sundowning is not uncommon for people with Alzheimer’s and dementia. Don’t feel like your loved one is the only one who experiences this, they aren’t.

If you still have questions and concerns about sundowning there is a plethora of information on the web that can help. The Alzheimer’s Association is, of course, another great resource.

I say this all of the time: Never hesitate to ask questions or for help. There are so many people ready and willing to support you through your journey. God Bless!