Everyone's Journey is their Own
by Tami Reeves
What does caregiver support mean? Support comes in all ways, shapes and forms. No one offering is better than another, it’s all about what the person needs in order to endure the burden they face daily. Even if that means taking a partner when the person who is ill is mentally incapacitated but still physically “here.”
In the case of the caregiver of an Alzheimer’s patient (or any mentally incapacitated patient), just the daily routine is a burden that no one understands until they have lived it. While the patient is living at home, assuring that they are safe, clean and well cared for, takes every waking moment for the caregiver. Bathing, dressing, feeding and loving such a person takes so much time and energy that there is little to none for themselves. All the while, the person they once knew is slowly slipping away.
The physical demands are excruciatingly difficult, then add in the emotional demands and the caregiver is soon left depleted, overwhelmed, feeling helpless and worst of all, alone. Their partner is finally moved into a skilled nursing facility, when they can no longer care for them alone. Now guilt is added in the mix of all of the aforementioned emotions. Loneliness becomes a constant companion.
This is where caregiver support becomes essential. Offering hours or even days of respite care, while the patient is still at home, is paramount to ensuring the caregiver’s physical and emotional needs are being met. Home care nurses offer support in the home when tasks become increasingly difficult due to the Alzheimer’s patient’s increasingly difficult behavior. Family and friends offering of love and support is essential. Alzheimer’s support groups, where one can feel free to discuss the overwhelming day to day trials of being a caregiver, gives support in a way that only people on similar journeys can understand. With all this support, what more does the caregiver need?
How about a partner? While I understand this idea may go against societal norms and may be taboo, I’d like to share what I learned from my journey with a caregiver whose wife had early onset Alzheimer’s, when we met.
It took a mere 20 minutes for my now husband to disclose his wife’s battle with Alzheimer’s. She was living in a skilled nursing facility, and no longer recognized anyone—not even him. He went on to explain that it was his family, including his wife’s mother, who encouraged him to find someone to help him get through the difficult days ahead. He also told me that his daughter set up his online dating profile, which is how we met. So in our circumstance, the family was fully supportive of Eric moving on. They had actually suggested it sooner, but he wasn’t ready. Once he felt comfortable, he began the quest for a partner who could help pull him out of his despondency and support him with love.
Eric and I fell hard for one another. He suddenly began feeling like he was living again. His daughter told me, several times, that she felt he was headed for an early death. That he was being reckless with his motorcycle riding and in the lack of attention to his diabetes. She mentioned that when I came into his life, I saved her father and brought back his smile.
The family embraced me for who—and what—I was for Eric. I was an educator when it came to medical questions he had about Gaye’s care and end of life decisions. I was the liaison between him and the care Gaye received in the nursing home, when he could no longer bear to see her rapidly declining condition. I’d often visit Gaye to check on how she was being cared for, and also to talk with her about her children and grandchildren. I kept her spirit alive with pictures of her on our walls. By displaying her coveted Santa collection every Christmas and by having Eric share his memories of Gaye with me, we kept the “real” Gaye alive in his mind, before the horrid disease claimed her.
I won’t lie, there were some very difficult days for me. That’s why I began journaling. I needed an outlet for my own pain. The pain of seeing my love’s heart break, over and over, when he faced decisions for Gaye’s care. The pain on his face, when he’d see his love turning into someone he didn’t know. The pain of not being able to move on with our lives without the worry of Gaye constantly on our minds. And the pain for the shame I was made to feel for being in Eric’s life as his partner, while Gaye was still physically “here.”
I believe that in this life journey, we are all to move the way we feel is right for us. The decisions we make are what we deem right for us. When medical staff at the nursing home and others who knew of our journey made snide comments or gave judgmental stares, I’d try to brush aside the pain. I’d focus on the task at hand—making sure Eric’s needs were met. Judgment from society was one of the most painful part of my journey with Eric; in my opinion, judging someone else has no place in society. We should all be focused on lifting each other up and loving one another, not judging each other in situations which we don’t understand. Because I truly believe that everyone’s journey is their own.
In the case of the caregiver of an Alzheimer’s patient (or any mentally incapacitated patient), just the daily routine is a burden that no one understands until they have lived it. While the patient is living at home, assuring that they are safe, clean and well cared for, takes every waking moment for the caregiver. Bathing, dressing, feeding and loving such a person takes so much time and energy that there is little to none for themselves. All the while, the person they once knew is slowly slipping away.
The physical demands are excruciatingly difficult, then add in the emotional demands and the caregiver is soon left depleted, overwhelmed, feeling helpless and worst of all, alone. Their partner is finally moved into a skilled nursing facility, when they can no longer care for them alone. Now guilt is added in the mix of all of the aforementioned emotions. Loneliness becomes a constant companion.
This is where caregiver support becomes essential. Offering hours or even days of respite care, while the patient is still at home, is paramount to ensuring the caregiver’s physical and emotional needs are being met. Home care nurses offer support in the home when tasks become increasingly difficult due to the Alzheimer’s patient’s increasingly difficult behavior. Family and friends offering of love and support is essential. Alzheimer’s support groups, where one can feel free to discuss the overwhelming day to day trials of being a caregiver, gives support in a way that only people on similar journeys can understand. With all this support, what more does the caregiver need?
How about a partner? While I understand this idea may go against societal norms and may be taboo, I’d like to share what I learned from my journey with a caregiver whose wife had early onset Alzheimer’s, when we met.
It took a mere 20 minutes for my now husband to disclose his wife’s battle with Alzheimer’s. She was living in a skilled nursing facility, and no longer recognized anyone—not even him. He went on to explain that it was his family, including his wife’s mother, who encouraged him to find someone to help him get through the difficult days ahead. He also told me that his daughter set up his online dating profile, which is how we met. So in our circumstance, the family was fully supportive of Eric moving on. They had actually suggested it sooner, but he wasn’t ready. Once he felt comfortable, he began the quest for a partner who could help pull him out of his despondency and support him with love.
Eric and I fell hard for one another. He suddenly began feeling like he was living again. His daughter told me, several times, that she felt he was headed for an early death. That he was being reckless with his motorcycle riding and in the lack of attention to his diabetes. She mentioned that when I came into his life, I saved her father and brought back his smile.
The family embraced me for who—and what—I was for Eric. I was an educator when it came to medical questions he had about Gaye’s care and end of life decisions. I was the liaison between him and the care Gaye received in the nursing home, when he could no longer bear to see her rapidly declining condition. I’d often visit Gaye to check on how she was being cared for, and also to talk with her about her children and grandchildren. I kept her spirit alive with pictures of her on our walls. By displaying her coveted Santa collection every Christmas and by having Eric share his memories of Gaye with me, we kept the “real” Gaye alive in his mind, before the horrid disease claimed her.
I won’t lie, there were some very difficult days for me. That’s why I began journaling. I needed an outlet for my own pain. The pain of seeing my love’s heart break, over and over, when he faced decisions for Gaye’s care. The pain on his face, when he’d see his love turning into someone he didn’t know. The pain of not being able to move on with our lives without the worry of Gaye constantly on our minds. And the pain for the shame I was made to feel for being in Eric’s life as his partner, while Gaye was still physically “here.”
I believe that in this life journey, we are all to move the way we feel is right for us. The decisions we make are what we deem right for us. When medical staff at the nursing home and others who knew of our journey made snide comments or gave judgmental stares, I’d try to brush aside the pain. I’d focus on the task at hand—making sure Eric’s needs were met. Judgment from society was one of the most painful part of my journey with Eric; in my opinion, judging someone else has no place in society. We should all be focused on lifting each other up and loving one another, not judging each other in situations which we don’t understand. Because I truly believe that everyone’s journey is their own.
Tami Reeves, RN, is the author of Bleeding Hearts. She is currently working to establish the Gaye L. Reeves Foundation in her memory to help families of Alzheimer’s victims, providing support and raising awareness for the suffering that loved ones of patients endure.