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Lies. Damn Lies and Statistics Editorial Responses
These are just some of the many responses we received from our Editorial of 05/02/07 - Lies. Damn Lies and Statistics

My sister, brother and I provide caregiving for both parents. We all work full time, but since I have no children, I am currently doing more of the caregiving tasks. My brother saw that I was becoming stressed out and made arrangements with his employer to flex his work schedule so that he could do the dinner prep and evening medications one weekday evening.

Just having that one day where I could take time for what I needed (gym workout, hair appt, dinner with friends etc) has made such a difference. AND Mom and Dad get to spend additional time with their son!
So if your readers have a family situation involving caregiving, I hope that they realize the value and importance of pitching in to help!


Three cheers for each and everyone who works hard in their countries, states, and communities for funding of respite care! It provides a necessary and useful pause for caregivers. Now, what about the person who uses the service? What about the quality of the service? Is the person who uses the service - the actual customer of the service - involved in the evaluation of the service? Does the representative of the people (the government official who signs the check for the service) evaluate the service? Licensing organizations most often assures everyone who works there has passed a test, gone to school, or sat through some in-service. In no way does it assure the quality of the service, the usefulness of the service, the enjoyment of the service.

Unfortunately the need for these services far surpasses the availability of these services. The marketplace does not work when it comes to respite service. Most caregivers are happy to find an opening!

As a person living with the diagnosis of dementia, probably of the Alzheimer's type I want advocates of government supported respite services to first identify what are quality respite services, as determined jointly by people with dementia and their caregivers, and then crusade for payment for these services. Too little attention is paid, in my humble opinion, to deciding first what is quality respite service for the people who actually use the service. There seems to be a rush for respite service to benefit those who drop us off, and too little attention paid to what happens to, with, and for us after we have been dropped off. I'm not suggesting we are abused, but we need to be more than just entertained. We need to be challenged to be all we can be. We need to be treated like we are whole human beings, not defected ones. We need to be involved to the extent we can in planning and evaluating these services.

I have visited and spoken with the users of many, many respite services. Many of the participants know what is good and bad for them about the services. Most of them are not asked for their opinion, and if they are when their opinion is negative it is ignored. It's time for the users to speak up and its time for their caregivers to speak out for standards of care, for appropriate activities. Don't waste a day of our lives watching TV, listening to people speak in whom we aren't interested, participating in child-like activities - when we can and should be treated as adults. Enable us to act like adults. Re-able us to use all our abilities.



I stay up very late - way past my husband's bedtime and our dogs' bedtime. I work on my computer, read, and do my art. People are always shocked if I tell them, and my husband is always "squawking" about my arising time, but that is the way I cope.

I also go up to Tully's (coffee place) every day (which my husband is supportive of), drink tea and read mysteries. It provides me with my friends up there and MY time. I couldn't do without it!

Advice: don't let anyone take away your precious time!


My wife of 39 years, 8 months was head injured in a car crash almost 18 years ago. She has been unable to work ever since. She has short term memory deficits. At the time, I was working full-time, and she was the mother of our two teenage daughters, and manager of a child care school and day care with 25 employees. Taking over her jobs was daunting.
Within two years, I was suffering burnout. I broke out in hives on my hands and the bottom of my feet. The doctor asked if I was under any "stress". A quick inventory of my duties was a wake up call. I took early retirement, sold her business, and began a long process of paring and simplifying my life.

Although I am not an expert, I find giving my wife three days of adult day care a week is a great gift to me. She loves her "game day". I do chores, part-time work as a private investigator, and photography in this free time. I am blessed with two daughters who give me the gift of respite one or two times per year by taking over as caregivers. I take a trip, visit old friends in other parts of the country or just rest.
Hives are no longer a part of my life. I am refreshed and ready to get back to care-giving. Although I miss my "best friend" more than I can express, my wife lives in the present and she tells me daily, "I love you". Life goes on.


I am the 56-year-old caregiver of my 72-year-old husband who is completely disabled by Fragile X Associated Tremor Ataxia Syndrome (FXTAS). FXTAS is a progressive, degenerative neurological disorder caused by a genetic abnormality of the X chromosome. In 1999, right after we were married, my husband (at age 64) began to fall occasionally and to have trouble putting one foot in front of the other while walking. Within four years, he could no longer walk on his own, due to loss of balance and coordination; he was completely incontinent; and his mind was suffering severe cognitive impairment. Since 2003, my husband has needed full-time care, as he could no longer perform any activities of daily living on his own, nor could he ever be left alone because his mind was not working well enough to call for help if he needed it.

So, I became a full-time caregiver - showering and dressing my husband, helping him walk as much as possible, doing exercise with him, taking him to various doctors for his different medical issues, and becoming solely responsible for keeping up the house, taking care of finances, and every other aspect of our lives. I modified the house with stair lifts, wheelchair ramp, and redid his bathroom to make it handicap-friendly. I bought walkers, transport chair, shower chairs, gait belts, and whatever else I could find to make life livable.  Besides the physical strains of this new caregiving life, I suffered horrendous grief and anxiety, as my husband's mind became more and more affected by illness, and communication between us all but disappeared.

Enter RESPITE CARE. I started seeking respite care in 2004, just for a few afternoons a week, so I could leave my husband to do errands and visit my new grandchildren. I went through many caregivers from many agencies, because it was hard to find aides who would work only a few hours. I was told home health aides ideally wanted 12-hour shifts. At 16-18 dollars per hour, I tried to hire the minimum amount of help to get by on. By the summer of 2005, I was breaking down - crying, screaming, and my blood pressure was rising. I couldn't take the constant physical, mental and emotional strain any longer. I decided I needed help every day to shower my husband, move him around, and give me more freedom to get out of the house. I started with six hours of help every day; this lasted a few months until the caregiver left. Her agency couldn't find a replacement...

Totally at my wit's end in the spring of 2006, I called a geriatric care manager to recommend a home healthcare agency. This agency has actually worked out well so far. I presently have two male aides - one who comes six or seven hours every day, and one who comes for four hours in the evening. In the past months, things have finally settled into a livable routine. My husband can still walk if the aide and I hold him up, and I coach him along. Aside from the FXTAS, my husband is still healthy, and he has actually gotten a little more alert and talkative, with better coordination - I ascribe the improvement to Prozac, selected supplements, and PRAYER. I am feeling much better, and I get out every day to church, to see friends, to see my daughters and grandchildren. I have a support group for well spouses (Well Spouse Association) and am involved in several church activities...

Respite care is extremely necessary for family caregivers - it is not merely a luxury. People don't realize how impossibly taxing caregiving is until they've done it. Even while I was caring for my husband on my own, I didn't understand why I couldn't keep doing what I had been doing for him without breaking down; but the strain just gets worse with time, because in the case of chronic illness, there will be no end when it gets better. All you have to look forward to is the illness getting even worse and life getting even more complicated (let's not even get into the healthcare system that we caregivers have to navigate!!). Add to that the intense grief of seeing your loved one deteriorate, and it can be unbearable.

Caregivers are doing the most important work there is - caring for other people. And aside from fighting in a war, it could be the most dangerous work there is. Caregiving can be very harmful to one's health! It's horribly unfair when a caregiver cannot work outside the home to earn money and then must pay out huge sums to get the critical respite help they need. The government should take some of the billions of dollars it wastes, and direct it to stipends for family caregivers - DIRECTLY - not through complicated so-called respite care programs that are bureaucratic nightmares.

Please - someone out there - help us caregivers!!

T. C.



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