It’s your turn again. Please tell me how you are doing. If you’d like to share a bot of your story, please do. It may help another caregiver.
Good Morning Caregivers
05 May 2015 Leave a comment
in care giving, caregiver, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, home care, Home Health, Lewy Body Dementia, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, power of prayer, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, sundowning
An Army of One
Look around. Whom do you see? Women, men, teens, grandparents, spouses, sisters, brothers, friends, significant others. Nurses, home-health aides, doctors, Visiting Angels, hospice care workers, social workers. Priests, nuns, ministers of every denomination. People of all races and ethnic origins. All across the world, in every country, we are there. We are the caregivers.
Yet we are alone. Every story is different. Every caregiver fails in his or her own way. The guilt eats at us. The lack of sleep drains us. The accusations of neglect and abuse by loved ones suffering from dementia or brain injury haunt us day and night. We feed and clothe and them. We bathe them. We cry for them and with them. We love them. And some days we don’t like them. We go to battle for them and we beg for some time away. We are part of you and we are alone.
My husband and I planned for the time when one or more of our parents would need care. We would bring them into our home and provide a safe, loving place for them as longs as it was needed. It would be hard but hard is what life is sometimes.
Living with and caring for my father-in-law, Rodger, was far more difficult than I ever imagined. I never suspected his quirky behavior was due to schizophrenia first diagnosed in his early twenties. A diagnosis long hidden from members of the family, including my husband and me. Not only had the disease affected his life but so had the years of powerful drugs that enabled him to function. His memory and ability to reason were vastly diminished. Suspicion and paranoia made it impossible for him to trust me while I, innocent that I was, trusted him when he said he took his medication.
Although he lived for five years after his last psychotic break he never really recovered from it and the near fatal bout of pneumonia that he came down with while in the hospital. After that came the heart attack, followed by surgery to implant a pacemaker. The pacemaker led to blood clots forming in his arm. Blood thinners requiring regular blood tests caused him great anxiety.
“What is the government doing with my blood? Why do they need so much?”
My suspicion that he was developing Parkinson’s disease was deemed incorrect until months later it could no longer be denied. It ran in his family and his sister had recently died from it. He needed a walker and could no longer use the stairs. Severe swallowing problems meant pureed food and thickened liquids made up his diet. I learned to cook food that tasted good and offered as much nutrition as possible but even I had to admit it looked awful. Dementia came next bringing the phenomenon of sundowning along with it. No one slept much once that started.
When people learned I was a caregiver they would say they understood. Some may have, on some level. But, I knew deep in my heart that they could not really know how it was. How could they? His life was his own. His back story defined who he became. His history of illnesses was as convoluted and complicated as his mind. He needed so much. What he got was one woman, part of a vast army of caregivers who tend their loved ones alone.
Some Caregiver Statistics from The Family Caregiving Alliance
Who are the Informal Caregivers?
Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study, e.g., age of care recipients surveyed or relationship of caregiver to care recipient.
Magnitude
- 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
- 52 million caregivers provide care to adults (aged 18+) with a disability or illness. [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] – Updated: November 2012
- 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer‘s and Dementia , Vol.7, Issue 2.] – Updated: November 2012
- LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%. [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers] – Updated: November 2012
Good Morning Caregivers
04 May 2015 Leave a comment
in care giving, caregiver, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, understanding dementia, women's issues Tags: Dysphagia, help for caregivers, in home caregivier, Lewy Body Dementia, Open Books Press, paranoid schizophrenia, Parkinson's Disease, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, sundowning
A Caregiver’s Dream
One of the most common bits of advice for caregivers is to get a good night’s sleep.
“Goodnight.”
What wonderful images that simple word brings to mind. I close my eyes and see myself drifting off to sleep in the biggest most comfortable bed on the market. I’m covered with a whisper soft blanket. I’m hugging my pillow. A tiny smile hints at sweet dreams to come. When morning arrives I will awake refreshed ready to face another day caring for my loved one.
That is what I was supposed to do, right? That’s what all the experts said. Trust me, it’s what I would l have loved to do.
Enter reality:
“Goodnight, Rodger.” “Goodnight.”
It was eight o’clock in the evening and he had just had his last breathing treatment of the day. Only one round of medications was left to be taken. I had two hours to spend some time with my husband. We were exhausted and only half listening to each other. I kept one ear open in case Rodger needed me. Nodding at my husband to indicate I was paying attention, I was also fighting to keep my eyes open.
At 10:00PM I got up and took Rodger his last medication of the night. He took it without complaint. Yea!
“Goodnight, Rodger.” “Goodnight.” I was too tired to brush my teeth. Tomorrow was another day and I hadn’t had much to eat anyway. Did I take a shower in the morning? I couldn’t remember. I’d do that in that the next day too. After saying my prayers I closed my eyes and waited for sleep to come. My thoughts looped and circled around on themselves. What ifs and why didn’t I competed with I should have until I finally lost consciousness.
12:15 AM – His bed alarm went off. He hated the alarm. He hated the bedside commode and he resented me for making him use them. I ran down the hall to discover he had scooted down to the foot of the bed and managed to squeeze through the space between the bedrail and the foot of the bed. He was clinging to the rail, trying to keep from falling.
“Here, let me help you.” I eased him over to the commode and helped him stand to pee. He refused to sit. “I’m not a girl!”
“Why didn’t you call me if you wanted to get up?”
“I didn’t want to bother you. I used my short cut.”
“Short cut?” It took me a few moments to understand he was talking about the gap between the bedrail and the end of the bed.
“You aren’t supposed to get up unless someone is with you. You could fall. That’s why the doctor ordered an alarm for your bed.”
“The doctor sent it?”
“He explained it when you saw him last month?”
‘I don’t remember. How does he know if I go to the bathroom? It’s none of his business.”
Five minutes later we were both back in bed.
12:45 AM– His bed alarm went off. That time he tried to climb over the rail and was stuck half way.
“What are you doing?”
“I have to pee.” I got him up and helped him to the commode. He stood for a couple of minutes. Nothing happened.
“I thought I had to go.” We went back to bed. 2:00 AM – The bed alarm went off. He was stuck half way out of the bed again. We repeated the scene above. 2:10 AM – Alarm went off again. His foot is stuck in the rail. 3:05 AM – Alarm went off again. He had scooted down to the foot of the bed and was trying to get up.
“I have to pee.” That time he did. 3:15 AM – Alarm went off again. “I’m thirsty.” I went to the kitchen and mixed some thickener in water and helped him spoon it into his mouth.
4:00 AM – He was calling for me. I rushed to room. His covers were tangled around him and he couldn’t move. I got him into a chair and arranged his bedding. Had him pee while we were up. 5:15 AM – The bed alarm went off again. I knew I was up for the day.
The next day, and the next, and the days after that? Repeat the above actions from the beginning. Sometimes it was the voices that woke him. Some nights he thought it was day and he was ready to start his routine.
Believe me, I followed all the suggestions, I kept him up during the day. It didn’t matter. I put him in adult pull-ups so he didn’t have to use the bedside commode. I’d find them torn to shreds the next time I went to his room. I followed all the advice about soothing music and quiet time before bed. I tried it all again and there we were night after night. Sometimes I made a bed for myself on the floor beside him so he knew he was not alone. Still the alarm went off through the night.Get a good night’s sleep? I was ready. I even drifted off for a while, and then his bed alarm went off. Again.
Caregivers do need a good night’s sleep and they know your suggestions are well intended and sincere. What they want you to know is that it’s not that simple. Their days and nights are full, minute to minute, crisis to crises. So if you are wondering how to help a caregiver my suggestion is a gift certificate for a few hours of respite each week so she or he can take a nap.
Good Morning Caregivers
03 May 2015 Leave a comment
in care giving, caregiver, Caregiving, sandwich generation, Uncategorized, understanding dementia, women's issues Tags: Alzheimer's disease, Caregiver Support, Dysphagia, elder care, Family, home care, Parkinson's Disease, precious moments, sandwich generation, Senior Health
My prayer for you today. Blessed be.
Good Morning Caregivers
02 May 2015 Leave a comment
in care giving, caregiver, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, nursing, sandwich generation, understanding dementia, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, elder care, Lewy Body Dementia, sandwich generation, Senior Health, sundowning
“I didn’t sign up for this.”
“I can’t do it another day.”
If this is how you feel, it’s okay. Trying harder isn’t always the answer. There may come a day when you have done all you can and it’s time to make the decision to move the person in your care into a facility better equipped to cope with their growing needs.
Please know that if that time comes you are not giving up on them. You are still the most important person in his or her life. What you are doing is making sure this person continues to get the best care you can provide. You will be able to regain the strength to see this through. You will visit. You will continue to be their best advocate. You have not failed. You are a true hero.
Be kind to yourself this day and know you are not alone.
Good Morning Caregivers
01 May 2015 Leave a comment
in care giving, Caregiving, family issues, mental illness, nursing, sandwich generation, Uncategorized, understanding dementia, women's issues Tags: Alzheimer's disease, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, elder care, family stories, Lewy Body Dementia, Parkinson's Disease, precious moments, respite care, sundowning
If today our loved ones are young again, running barefoot with the wind rippling through their hair, let us join them in their moments of freedom. It is far easier for us to enter their world than for them to enter ours.
If your mother or father don’t recognize you today, it may because in their mind they are still becoming the person who will hold you in their arms in the future. It doesn’t take away a single moment of the time you have shared. You are their memory keeper as they relive the moments that came before. Each has a gift to share with the other. Cherish the moment.
The Imperfect Caregiver 
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