One Is The Loneliest. . .

I’ve heard caregivers say how lonely it is to be a caregiver.

For people not involved with caregiving, or know of a caregiver, they probably don’t understand how a person is lonely in the role of caregiving. After all, you’re with your loved one most all of the time if not all the time.

Caregivers have a challenging role in life. They aren’t just caring for a loved one, they’re also still trying to (hopefully) take care of themselves, or maybe they’re still raising a family and working both ends of the spectrum.

Even people who are not in a caregiving role can be lonely for various reasons. However, for caregivers it’s a different kind of loneliness.

Caregivers often find themselves in a one-sided conversation.

Their loved one is no longer able to converse, and if they do try to speak, their words have become jumbled in ways that make no sense. Even sitting and watching a movie or t.v. show there is no interaction or discussion about what’s going on in the show. Lonely.

How are you supposed to go through each and every day as if you are living alone? Lonely.

Starting the day with helping your loved out of bed, getting them dressed, preparing their breakfast and talking about the beautiful day ahead. Lonely.

Taking your loved one on an outing to get some fresh air and pointing out the beauty of nature and hearing the birds sing. Lonely.

I could go on and on with more examples, but I don’t think you need anymore. If you’re a caregiver you already know.

When I said earlier: ‘For caregivers it’s a different kind of loneliness’, it’s obvious from the examples.

The person you’re caring for cannot perform the normal tasks of someone who is not afflicted with dementia. When you lose that “normalcy” in the family, it becomes a sad and grieving loneliness. Even if you occasionally have visitors it’s still lonely because it’s not about having people visit. It’s about having lost the person you have loved and cherished for so many years. Physically they are there, mentally they are not. That is lonely!

As I was writing this, an old Three Dog Night song came to mind: One Is The Loneliest Number.  If you think about the lyrics it’s similar to how a caregiver feels.

Please know, that as a caregiver there are many emotions you will experience, feeling lonely is one of them. Keep surrounding yourself with positive upbeat people. Find humor in as many things as possible; laughter is truly the best medicine.

Take a walk down memory lane with your loved one. Show them pictures of earlier years when they were active and engaging. If you have home videos/movies show those and watch them begin to smile. Play music they used to love and enjoy.  I promise you, there will be a trigger in their memory somewhere along the way that will bring them back, even if it’s only for a glimmer of a moment. It’s not only good for them, but it’s monumental for you too!

And keep this thought. . .

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Physical Touch and Dementia

Many of us enjoy the physical touch of another person whether it’s from a parent, spouse, sibling or a best friend. We all need some physical touch in our lives.

It’s been proven that even babies who are denied any physical contact will not survive and if they do survive, they have emotional problems.

A person with dementia is no different than an infant. They, too, need physical touch because it’s demonstrating LOVE to them. Whatever stage of dementia they are in, they still need and want that touch of love. You might be wondering how would they know if they need it or want it? From my own personal experience I can tell you whether I just touched the hand of my mother or embraced her, it put a smile on her face. You see it in your loved ones eyes. The saying, “The eyes are the window to your soul”, has merit.

As a Caregiver you learn day by day what works and doesn’t work with your loved one. There might be a particular day you try touching and you get a negative response. Don’t take it personally, they might be having a tough day and that particular moment isn’t the time for touching them. So what do you do? Just sit with them. You can try reading to them, listening to music with them, or do nothing at all. Just having you there and being present sometimes is enough for someone with dementia especially if they have trouble with their verbal skills.

I’ve mentioned this before, but always approach a person with dementia from the front making sure you are at eye level with them. Speak in a calm voice, smile and then reach out to touch their hands.

If your loved one is in the middle stages of dementia never just walk up and try to embrace them because it can frighten them. I say this because in the middle stage of dementia a person can experience delusions and paranoia so trying to embrace them like you’ve been accustomed to doing, might not work and can even agitate or frighten them. Again, if this happens, don’t take it personally, they don’t know any better.

Of course, this doesn’t mean you’ll never be able to hug your loved one again. On the contrary. I’ve seen with my own mother that in one moment I wasn’t able to touch her and in the next she was holding my hand. There’s always surprises when you’re caring for someone with dementia! You just never know what they will do or say (if they are verbal) next. Be prepared for ANYTHING!

Never let any negative behavior keep you from extending your loving touch to your loved one. They might not understand what you say to them, but they can still feel what you’re trying to convey. Just because a person has dementia doesn’t mean they don’t have feelings, they do! So whether you’re touching or talking to them, do it with LOVE.

“Love is patient, love is kind.” 1Cor 13:4 (paraphrased)  “It always protects, always trusts, always hopes, always perseveres.” 1 Cor 13:7

 

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.