For Caregivers in Buffalo, N.Y.
20 Nov 2014 5 Comments
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized Tags: Alzheimer's disease, Bobbi Carducci, Buffalo New York, caregiver stress, Confessions of an Imperfect Caregiver, dementia, elder care, family stories, help for caregivers, home care, Home Health, Lewy Body Dementia, meltdown, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, Snowed in, sundowning
For caregivers in Buffalo, New York and the surrounding area here is a reminder that meltdowns are not only okay, sometimes they are exactly what is needed in order to carry on.
Any change in routine can wreak havoc for our loved ones. I can only imagine what seeing snow piling up for hours on end and having it cover windows and doors, creating a feeling of being trapped. is having on loved ones with Alzheimer’s disease and dementia. I pray that you have all the medications and all the supplies for everyday living that you need, that there will be no medical emergencies that require you to leave your homes, and that your loved ones remain as calm as possible.
And one more thing; if things become too stressful let it out. As singer, Leslie Gore, once said,
“It’s my party and I’ll cry if I want to.” https://www.youtube.com/watch?v=XsYJyVEUaC4
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How Much Can We Handle?
19 Nov 2014 1 Comment
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Bobbi Carducci, caregiver, Caregiver Support, Confessions of an Imperfect Caregiver, Dysphagia, elder care, family stories, hallucinations, Lewy Body Dementia, paranoid schizophrenia, Parkinson's Disease, prayer, sandwich generation, Senior Health, sundowning
It’s a sad truth that being a caregiver can break us. We don’t need to read the statistics to know that caregiving comes with a cost to our health, our relationships and our self-esteem. We do a job we know will end in incredible loss. We cannot win no matter how hard we try.
Those who don’t understand criticize our decisions and question our intentions during brief visits where the person who called us vile names and lashed out at us all night sits smiling quietly and complains about how we treat them.
And so we break. Sometimes for just a moment or two, other times we pray for days to find the strength to face the morning and start anew. And for some it all becomes too much and we become ill ourselves.
In my case as things became more complicated and the stress built I had panic attacks and migraine headaches. My hair began to fall out. I needed respite care. As a disabled veteran receiving all of his care at a VA hospital Rodger was entitled to receive care in the hospital for up to 30 days a year, no longer than 14 days in a row. We used it when we could but there came a time when we were told there were no beds available and respite care was suspended. I was desperate for rest and kept asking only to receive the same answer.
“There is no room.” That is until the day I spoke these words, “I need respite care for his sake and mine. If it can’t be arranged I will call my congressperson and if that doesn’t work I will have to admit him to the VA hospital nursing home permanently.” Two days later a bed opened up and we both got the break we needed. It shouldn’t have come to that. I know many caregivers don’t have that option and for them taking a stand will not make respite care available. We need to change that or there will be many more broken caregivers and who will care for them?
The following is fromCaregiver.org
Impact of Caregiving on Caregiver’s Physical Health
- While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well, 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities.
[AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving] – Updated: November 2012
- Research shows an estimated 17-35% of family caregivers view their health as fair to poor.
[Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.] – Updated: November 2012
- Those who are more likely to rate physical strain of caregiving “high” are female (17% vs. 10% males) and older (21% are 65+ vs. 11% at 18-49). They have lower incomes (19% vs. 11% of those with an annual income of $50,000+), a higher level of burden (31% vs. 9%, of those with a moderate level of burden and 5% of those with a low level), and are living with their care recipient (29% vs. 11% who don’t live together).
[National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] – Updated: November 2012
- 11% of family caregivers report that caregiving has caused their physical health to deteriorate.
[The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
- 21% of older caregivers caring for those 65+ report a higher degree of physical strain, compared to 13% who are younger.
[The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] – Updated: November 2012 - Women (16%) more than men (11%) report having more stress in caregiving responsibilities, (4-5 on a 5 point scale).
[The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] – Updated: November 2012
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I Don’t Think I Can Do This Anymore
18 Nov 2014 2 Comments
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's, Alzheimer's disease, Bobbi Carducci, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, elder care, faith, family stories, God, hallucinations, help for caregivers, Home Health, power of prayer, precious moments, respite care, sandwich generation, sundowning
I felt that way so many times in the seven years I spent as a caregiver for Rodger. I cried and vented and wished for more wisdom daily. I saw every setback, every new symptom, and every dreadful new diagnosis as a sign of failure on my part.
Scalded by guilt, worn down by his refusal to trust me, I resented him. Fearing where this spiral would take us and knowing any chance of respite care was weeks away, I began to pray. There were no miracles for us. He was not cured. I did not develop the patience of a saint. But it helped me understand, again, that he and I were not alone. And in that moment that’s exactly what I needed.
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An Unexpected Visitor
17 Nov 2014 3 Comments
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Caregiver Support, Confessions of an Imperfect Caregiver, Dysphagia, elder care, help for caregivers, Home Health, Lewy Body Dementia, sundowning
When I look at this funny looking little owl I can’t help but smile. It’s as if Rodger has come to pay me a visit. With his stern face, pants riding too high, and arms firmly planted at his sides the little bird looks just like him. And just as it was when Rodger was here, I wonder what thoughts he finds impossible to express.
I believe our loved ones who have passed stay near and sometimes send us a reminder they are watching over us. That may be the case here or it may be only my imagination. Either way it doesn’t matter. I see him today and I am smiling. He is free to soar.
The Face in the Mirror
16 Nov 2014 Leave a comment
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dysphagia, elder care, family stories, hallucinations, health, help for caregivers, home care, in home caregivier, Lewy Body Dementia, Open Books Press, paranoid schizophrenia, Parkinson's Disease, prayer, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, sundowning
Image Courtesy of the Caregiver Space
Reflections on Caregiving
by Bobbi Carducci
The face in the mirror evolved as you did. When you came to live with us I gazed on eyes full of hope. In my care you would do well. When you needed anything, I would provide it. We would share our stories and laugh or cry when feelings overcame us in the telling. For a time we did well.
Everything changed.
The face in the mirror reflected worry lines etched deep into my forehead. What was I doing wrong? Day by day, month by month, you slipped away. Would you know me today? When your memory left me behind, where did you go? And when, if ever, would you be back?
Time passed.
Eyes rimmed in black stared back at me. No sleep. Constant stress. You needed all I had to give and more. What we were to do, the two of us? We were at cross purposes fighting the same battle. You were determined I would not win. Every night I cried.
You are gone.
The face in the mirror is forever changed. In your living and your passing you left your mark on me. All the fear and loss, hope, love and laughter are reflected in my eyes. Every night I pray for you and hope you do the same for me.
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Give a Caregiver a Bath
15 Nov 2014 7 Comments
in care giving, Dementia, family issues, home health care, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: caregiver, Caregiver Support, Family, health, home care, Home Health, November, Senior Health
It is also a time to support the men and women who are currently caring for a loved one at home. You may have offered to help many times only to be thanked politely for the thought and never taken up on your offer. Some of you may have started to wonder if she really wants help. Maybe she prefers to play the martyr and do it all herself and whine about how hard it is in order to make you feel guilty.
“Why should I keep offering if that’s the way it’s going to be?” you may have asked yourself.
The answer is, “Because she needs help. She wants help. If she doesn’t get help she is going to break under the pressure.” Often she doesn’t know what to ask for.
When my husband and I first announced we were bringing his ill father to live with us, many well meaning people assured us they would be there to help when needed, and they meant it. I remember saying, “We are going to need some time off once in a while so we can go on vacation or out to dinner. It will be great if I can call on you then.”
“Of course,” was the answer, and they meant it.
I didn’t know then that going out to dinner or taking a vacation would not be what I would come to need most. As my father-in-law’s illnesses progressed what I longed for was an hour to take a long hot shower or to soak in tub of water up to my chin until my fingers and toes turned pruney. I’d have done just about anything to stop listening for signs he was in distress or that he somehow knew I wasn’t paying attention and had decided to go down the stairs unattended, risking a fall. Even an uninterrupted ten minutes on the toilet would have been a gift on some days.
I remember one morning in particular. He’d had his breakfast and I had helped him wash and dress. I’d seen to it he had his medications and the TV was tuned to his favorite show. He should have been good for at least thirty minutes. I was about to start a load of laundry when my I felt the sudden urge to pee. I had just settled on the toilet when I heard him calling.
“Bobbi! Bobbi! Come quick, I need you!”
He sounded so frantic I was afraid of what I would discover when I got to him. I jumped up in mid stream, pulled my pants up, and ran up the stairs.
“What’s wrong?” I asked, ignoring the warmth running down my leg.
“The TV’s gone berserk. I can’t get any channels.”
I bit my tongue, fixed the TV, and went to my room for a quick wash up and change of clothes. Clearly it was going to be one of those days.
If anyone had asked what I needed that day the answer would have been quick and easy.
“I need a bath.”
November is National Caregivers Month. The gift of time is precious for those for whom every moment counts. When wondering what you can do to help, consider stopping by a caregiver’s home someday. Maybe she’s wishing for a bath too.
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A Feeling You Wish You Didn’t Have …
14 Nov 2014 Leave a comment
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Anger, health, home care, Home Health, Hospital, ICU, Intensive-care unit, Pharmaceutical drug
The anger ebbed and flowed. The first time it hit me, right after Rodger returned home from an extensive stay in the hospital, I thought I was losing my mind.
I’d just spent months watching his mental health deteriorate as unbeknownst to me he’d been “cheeking” the medication for his paranoid schizophrenia and spitting them into the toilet once he got out of my sight. His medication had been adjusted up and then down, brands were changed and consultations scheduled over and over again.
Then it happened. One sunny Sunday afternoon he lost his mind. Accusing me of trying to poison him; he ran down the street, moving at a pace that would normally be impossible for a man nearing 80 years old.
“She’s trying to kill me!” He insisted, shaking with fear whenever I got too close.
He spent eight weeks in the psychiatric ward that time. Discharged on a Friday afternoon he was back in the hospital Sunday evening. He had pneumonia. They had sent him home sick. After a week in ICU he was finally well enough to go into a medical ward. He’d also developed swallowing problems somewhere along the line. He had to have his food pureed and his drinks thickened. He refused to eat slowly and take small bites as the doctor ordered. As soon as his tray arrived he’d grab a spoon and start shoveling the food into his mouth as fast as he could and then he’d choke. So a nurse fed him each morning and I made sure I was there for lunch and supper. Three weeks later he was finally well enough to go home. Once there he seemed determined to start the dance all over again.
“I can take my medicine myself,” he declared almost immediately upon returning home.
The anger reared its ugly head for the first time as I contemplated the downward spiral that would inevitably ensue if he were allowed to have his way.
I tried to pretend it wasn’t there but each time he tried to convince me to give him his pills it grew stronger. I was royally ticked off that he would even try to manipulate me again. I knew he would again lie and insist he was taking his medication when he wasn’t. I was furious that he would subject me and his son to sleepless nights and hours of driving to and from the hospital to assure he received proper care. I resented that he seemed to think he was smarter than me.
There were moments when I had to walk away as soon as he entered the room. I didn’t even want to look at him. I was racked with guilt and questioned my basic humanity. How could I possibly be angry with this sick old man? The guilt was overwhelming at times. I prayed, I vented in the car when I went to the grocery store and cried a lot.
I finally got some relief when I admitted my feelings to my husband.
Mike assured me that it was normal to feel the way I did; that the job I’d taken on was harder than anyone could imagine and what I was feeling was normal. I had nothing to feel guilty about. He took a couple of days off from work and encouraged me to get out of the house.
“Go see a movie. Get a massage. Pamper yourself,” he whispered as I cried on his shoulder, relief mixing with the overwhelming sadness that I finally allowed to engulf me.
I couldn’t concentrate on the movie. I spent the entire time in the theater trying to figure out what was wrong with me. I passed on the massage. I don’t like strangers touching me. But I did go to the gym. An hour of aerobics helped ease the tension from my shoulders and neck. It felt good to sweat and push myself again. The next day I went for a run on the treadmill. It was there that it all came together for me.
I wasn’t just mad at him for trying to take control of his meds. I was mad at him for tricking us and causing so much trouble but I was really mad at him for not appreciating all I had done and all I had been through. While I was busy caring for him I’d lost my own mother to non Hodgkin’s lymphoma. She was gone and he was still here. She took all her treatments and she died. He refused to do what he was supposed to do and I got to nurse him back to health. It wasn’t fair. He should be fighting with all he had just as she did. If anyone should still be here it should be…
In that moment I heard a soft voice whisper… “It’s not up to you to decide who lives.” And then I heard a short and very special phrase that rings true no matter how often it’s repeated. “Let go and let God.”
I found myself nodding my head in agreement and moments later I began to feel better. I was able to go home refreshed and take care of Rodger again.
It’s not a cure-all. The anger and resentment still came back sometimes when he was acting out. And I’d even gone so far as to tell God he had better get busy as I’d let go a while ago and he didn’t seem to be doing anything to help at that time. But finally recognized it for what it is.
Rodger was doing the best he could with a mind that was failing in spite of all the love and care and medication he was getting. And I was doing the best I could in spite of all my weaknesses and doubts. And God? He was there running alongside me on the treadmill, reminding me to take care of myself too.
So this is my reminder to you. Take care of yourself as well as you take care of your loved one. Go to a movie, get a massage, pray, get some exercise, sing at the top of your lungs, sob in your best friends arms, whatever it takes – do it.
Related articles
- World Mental Health Day: My experience in inpatient facilities/psychiatric hospitals (mm172001.wordpress.com)
- NHS mental health care in ‘crisis’ due to lack of beds, leading psychiatrist warn (independent.co.uk)
- Anger
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The Colors of Caregiving
13 Nov 2014 1 Comment
in care giving, Dementia, family issues, home health care, mental illness, nursing, schizophrenia, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, caregiver advice, Caregiver Support, caregiving, Confessions of an Imperfect Caregiver, dementia, Dysphagia, elder care, family stories, health, respite care, sundowning
Colorful is not the way one would typically describe the life of a caregiver but once my father-in-law, Rodger, came to live with us my days began to revolve around the colors of his life.
Outwardly he appeared to be a drab little wren of a man. All his clothing was either brown or grey, the monotony broken only by one of the muted plaid shirts he saved to wear for an appointment with one of his many doctors. His lined, expressionless face would have been a blank canvas if not for deep brown eyes topped by grey eyebrows so overgrown they rivaled those of the late Andy Rooney. When he spoke there were no colorful sayings to add interest. ‘Just the facts, Ma’am.’ Everything about him seemed designed to blend into the background. At the time I didn’t think to question why he was so determined not to be seen or what he might be doing when he thought I wasn’t looking.
Every day started and ended with a rainbow of colored pills, red, yellow, white, green, blue, pink. Some were taken once a day, others two or three times a day, to treat or control his mental illness, Parkinson’s disease, heart disease, Dysphagia, and various infections that seemed to pop up as often as weeds in summer. In between doses, billowing clouds of vapor from breathing treatments to ease his C.O.P.D. wafted out of his room. He counted out is various medications and filled his pill box weekly and he religiously filled out a mail order form when they began to run low. He knew when it was time for each pill and never failed to take them on time. Or so it seemed.
I should have known what he was doing when the symptoms first appeared but I was still too green to know how devious he could be. Even his doctors were fooled until they day his mind shattered into shards of throbbing suspicion. As I write this I try to imagine what a psychotic break looks like. I picture it as a swirling mass of colors so bright they burn his soul leaving him decimated and his caregiver shrouded in deep, purple guilt.
Eventually I discovered that the anger and resentment I sometimes felt when dealing with the daily stress of life as a caregiver could hide in a fog of grey fatigue or the flashing colors of an aura signifying the onset of a migraine headache causing me to scramble to find what I could to minimize the pain.
Fortunately, not all the colors of caregiving are dark or somber. If they were we couldn’t do it. I treasured the bright blue moments of clarity whenever they appeared. Like the day he told me how he and his brother would roll up the carpets in the farmhouse kitchen, when they were young men living in Italy, in order to dance a tango with girls from the village. Was that a hint of pink pride on his face at the memory of holding a pretty woman in his arms? I basked in the bright yellow sunshine of joy when he gently held his newborn great granddaughter, Ava, for the first time, his eyes full of love for the tiny creature gazing up at him.
Yes, being a caregiver is a very colorful occupation. When Rodger passed away, once the worst of the grieving passed, I realized that the moments we shared, the good and the not so good, would forever be part of the richly colored tapestry of stories being woven by caregivers who tend to their loved ones every day and I am grateful to discover there are places like this where we can share them. What are the colors in your story?
Note: This post first appeared on The Caregiver Space in 2013 under the title, 50 Shades of Caregiving. I am honored to be a guest blogger for them in addition to writing here as The Imperect Caregiver. You can also find caregiver blog postsby me on AgingCare.com
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What If I’m Next?
12 Nov 2014 Leave a comment
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dysphagia, elder care, family stories, help for caregivers, Home Health, Lewy Body Dementia, paranoid schizophrenia, sundowning
What if it happens to me? I’m scared. I know too much. I’ve seen the deterioration. I’ve heard the rants and the accusations.
“She’s poisoning me. She never gives me any food. I’m a prisoner here.”
When I wake in the middle of the night and get up to pee will an alarm start shrieking, scaring me so I wet my pants? I don’t want someone else to bathe me. I can’t bear the thought of anyone seeing me at an advanced age, withered and naked. I’ll probably fight, kicking and screaming, if they try.
What about all those pills? What will they do to me? Drug interactions can make things much worse. Remember, I know too much. I’ve seen it. I won’t want to take them.
If I want to leave my room and walk the halls because I’m tired of sitting for hours will people try to confine me and say, “She wanders all the time?”
Being a caregiver was the hardest thing I ever did. It was also a gift to be there for those who needed me. Still, I’m afraid. What if I’m next?
As Iwrite this, I am grateful that my children say they will be there for me. I don’t want to go to a care facility where the names and faces change daily. I’m not comfortable around strangers now. I can only imagine how much worse it would be then.
I want to know. I need to know. Is Alzheimer’s and dementia hereditary?
***
According to information posted on the Alzheimer’s Association website, the majority of dementia is not inherited. The article written by, Professor Nick Fox, Honorary Consultant Neurologist at the Institute of Neurology in London says in part:
“Many people fear that Alzheimer’s disease in the family may be passed on to children and grandchildren. In the vast majority (99 per cent) of cases, this is not so. Like many conditions, having Alzheimer’s disease in the family does very slightly increase the chance of people in later generations getting the disease.
The most important risk factor for Alzheimer’s disease is age. Because Alzheimer’s disease is so common in people in their late 70s and 80s, having a parent or grandparent with Alzheimer’s disease at this age does not change your risk compared to the rest of the population.”
***
Reading that article and others on the subject, I feel better. But, it also goes on to say,”There are some forms of dementia that are inherited.” As far as I know, there is no indication any of them run in my family. I’m relieved for now but I know every now and and then I’ll begin to wonder …
The entire article referenced in this post can be read here: http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=917
For all of us, for all forms of dementia, I pray a cure is found soon.
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The Imperfect Caregiver 
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