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"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown." Helping caregivers of Alzheimer's patients, navigate through deep waters.

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Study to Assess Alzheimer’s Effect on Caregivers

Screenshot 2016-07-27 00.16.17
Picture by Michael Havens (Flickr)

Participants Wanted for Alzheimer’s Caregiver Study

If you’re reading this page it is assumed that you are either a caregiver for an Alzheimer’s patient, or you know someone that is. That being said, if there were a research study that assessed cognitive data, to track caregiver health, would you participate?

There is in fact such a study, and here’s the clincher; the Health-e Brain project will only include individuals who wish to participate. As you can imagine, a voluntary group of people can just as easily opt out, so for this reason, researchers are requesting that interested parties carefully consider their decision to take part in the 12-week, online study.

Dr. Corinna Lathan, co-founder and Chief Executive Officer of Anthro Tronix, andSteve Sidel, founder and Chief Executive Officer of Mindoula Health Inc., are teaming together to lead the research project. Participants will include both men and women, between the ages of 45 and 65 years of age. Researchers hope to enroll as many as 400 participants. The primary focus of the study is to “help scientists understand how the caregiving experience impacts brain performance”, by assessing cognitive vitality and mental health.[1]

There are a few requirements to be accepted into the study. For instance, participants must be current caregivers that have been providing care for at least a year.

The BrightFocus Foundation and the Geoffrey Beene Foundation Alzheimer’s Initiative support the Health-eBrain study. [2]

For more information or to join the survey, follow the link below.

https://www.health-ebrainstudy.org/join-the-study/

[1] https://www.health-ebrainstudy.org/?utm_source=BrightFocus%20&utm_medium=social%20&utm_campaign=BrightHEB

[2] https://www.health-ebrainstudy.org/?utm_source=BrightFocus%20&utm_medium=social%20&utm_campaign=BrightHEB

Caregiving Complicates Parenting

Raising kids and caring for a loved-one with Alzheimer’s disease

Sixty to seventy percent of unpaid caregivers of Alzheimer’s patients are women. Women of varying ages, are juggling life with kids, life at work, and life with Alzheimer’s disease. This article takes a brief look at what it’s like to care for a loved one, while also raising kids; at best, it’s complicated.

Caregiving Complicates the Parenting Process

There is little rest for a wearied parent battling the onslaught of his or her own parent’s dementia, while attempting to keep life as normal as possible for their children. But, there is no normalcy with dementia. Relentless and devastating to families, Alzheimer’s disease rips through aged minds, eliminating basic memory. Brushing teeth, feeding, bathing, and all other rudimentary daily responsibilities ultimately fall to the caregiver.

The mundane tasks associated with caregiving lengthens days, but childhood is short. Caregiving parents strongly sense their children, rapidly slipping through their fingers. Parents miss ball games, recitals and other special events that mark accomplishments and the passing of time in a child’s life.

We fear that our children are denied what we are most challenged to provide; our full and undivided attention. Having to choose between the joys of parenting and time caring for an elderly parent is not a fair choice, but is one in which, caregivers attempt to find a balance. We are also plagued with an accompanying anxiety. We are anxious that our children will somehow lose themselves and the whimsy of childhood, as we are entrenched in the throes of their grandparent’s disease.

Good parents seek to provide good homes, good relationships and good experiences, as their children pass through the growing years. Unfortunately, Alzheimer’s often negatively influences relationships, as the affected person becomes less and less himself or herself.

Privy to grandma’s slow demise, will children of the diseased become overly burdened with emotional turmoil that is beyond their years? These are the questions and dilemmas that caregivers with children face. But, there is good news in the midst of this situation. Children are most often stronger and more understanding than their parents suppose.

Children are a blessing.

Eleven years ago, when my own dear mother was diagnosed with dementia, we had four children, eleven years of age and under. My husband and I were fearful of what the future would hold as our parents aged. We made a purely, intellectual decision. We would not have another child. That being said, our only son was born the year following my mother’s diagnosis. So, with five children, aging parents, and one with dementia we moved forward into uncertainty. We found through the process, that our children were very strong, stronger than we gave them credit. They were a blessing to one another, to their parents and to their suffering grandmother.

It was remarkable to watch our children adjust their hearts and minds to the pressing needs of our family. They were learning a valuable lesson, one that all children would do well to learn, and some adults too. Through the caregiving process our children recognized a few things: they were not the center of the universe, life is sometimes hard, and everyone has a responsibility in the hurts of others. Don’t get me wrong, our kids had their understandably selfish moments, but overall, we found they were willing to make sacrifices in deference to their grandmother’s needs.

The older children had the advantage of remembering their grandmother when she was well and lovingly doted on them. The younger children’s point of reference, however, was rooted in her dementia. They weren’t privy to the grandmother that baked bread and cookies, that played games on the floor, or as an advocate, defended their naughty behavior before their parents. Though she remained sweet and kind, their granny was not the same person. She was not the granny their siblings once knew. This made me sad and I mourned my younger children’s loss. But, I also was learning a new lesson.

I am not sure at what point it dawned on me, but I came to realize that my little ones loved their grandmother just as she was-plagued with dementia. It was of little consequence that she sometimes exhibited odd behavior. They adored her and like the older kids, made exceptions on her behalf. They enduringly answered the same questions over and over again, watched television through her endless chatter and witnessed the occasional hallucination that took their grandmother further out of the present, and into the abyss of Alzheimer’s disease. The children loved her just as she was, and even with dementia, she loved them right back.

If your family is facing the disease, please know that there is hope. Raising your children while caring for a loved one with Alzheimer’s disease may be the hardest thing you will ever do. However, with your assistance, children can thrive through the challenges of growing up with a caregiving parent. A few suggestions follow:

  • Do not ask your child to complete uncomfortable tasks.

It is reasonable to expect your children to help out a little. However, it is best that children do not attend to certain jobs. Jobs that compromise the grandparent’s dignity in front of the child should be left to the caregiver. 

  • Do not minimize your child’s feelings.

Do not say, “You shouldn’t feel that way”, but help the child work through his or her feelings. Be truthful about what you are also feeling. You may find your emotions are similar.

  • Give your kids love at all times.

Children will adjust to almost anything, if they know you love and support them. As much as possible give your children your attention. Listen to them when they talk to you. Hear what they are saying and respond lovingly. Your time is divided, but on those occasions when you are with your kids alone-make it about them.

  • Remind your children that the person, for whom you are providing care, is the same on the inside as they were before the disease.

Teach your children to love that person. Talk to children about the good memories you have surrounding the Alzheimer’s patient. Embrace moments of clarity and draw your children’s attention to those moments.

  • Teach your kids to love others.

Explain to your child why it is that you care for your elderly parent. Tell your child how you love your mom or dad in the same way that the child loves you. Teach them that love demands action. 

  • As often as possible, be present for your child’s events.

This will be impossible on many occasions, but try very hard to be there. Make the effort for the sake of your child. Your kids will sacrifice many occasions, but caregiving parents must make an effort to be present. Divide and conquer – one parent goes while another stays home. At least be present for the big events. Hire a healthcare professional for an hour or two on those occasions.

  • Solicit the help of trusted friends and family members.

When you are tied down with caregiving, ask friends or family members to chauffeur your child to a birthday party, football practice, dance class etc. It may seem like a lot to ask, but often people who want to help, do not know how. They are willing, but must be instructed on how they can assist your family. Be sure the person you solicit is one that you trust without reservation, and with whom your child is comfortable.

Yes, caring for a family member with Alzheimer’s disease will complicate the parenting process, but the experience could have a hand, in producing children that will be stronger, more loving and empathetic adults.

 

 

Defining Alzheimer’s Disease

Ladies and Gentlemen, this is Alzheimer’s disease

Holding a practice ball in his hand, the late Vince Lombardi, coach of the Green Bay Packers, began the first day of training camp with these words, “Gentlemen, this is a football.” Who doesn’t recognize a football? But, it’s kind of like that with Alzheimer’s disease. We think we know what it looks like, but aren’t certain we’ll recognize it, if it shows its ugly head.

The Alzheimer’s Foundation of America defines Alzheimer’s disease as “a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes“.

Somehow, with all the medical terms, the definition of Alzheimer’s doesn’t sound as heinous as it really is. But, those of us who care for loved ones, are all too familiar with its fiendish ways. The results of what happens to a brain when it begins to degenerate is beyond imagination. Though Alzheimer’s disease is the most common cause of dementia, caregivers will tell you, that even the word dementia doesn’t do it justice.

And, ladies and gentleman, THIS is Alzheimer’s disease.

Its final form is crippling-demise, which may be the reason that many don’t recognize Alzheimer’s in the early stages. Alzheimer’s has one redeeming factor; it is often slowly unfolded. Unfortunately, this can work against the undiagnosed, who tend to compare their cognitive abilities to persons who have been facing the disease for some time. Obviously, the cognitive ability of a person in the early stages, will be vastly superior to those in the waning stages of the disease.

Self diagnosis

Do not self-diagnose. It may sound funny, but this is exactly what a lot of people tend to do. It is a form of denial. Here’s what often happens. Knowing someone who has dementia, you begin to compare yourself with their capabilities; and surprise, you come out feeling pretty good about your cognitive abilities. You can, after all, remember your own name, where you live, and what you had for breakfast. This isn’t a real test.

No one wants to be diagnosed with Alzheimer’s disease, but a misdiagnosis, or going undiagnosed is worse. See a health professional for a complete physical and mental evaluation.

Diagnosis and Early Detection

Find a doctor that specializes in Alzheimer’s disease. Ask your primary physician to refer you to a healthcare provider that specializes in the treatment of Alzheimer’s diseases and other dementias. It is very important that you see a specialist in the field, as a primary doctor/general practitioner, internist, etc., may not have extensive experience with the disease.

A neurologist, psychologist, or psychiatrist will be able to diagnose your situation, as it pertains to memory loss associated with Alzheimer’s. Early detection is very important, and can assist the patient in holding the disease at bay for a long time. Alzheimer’s disease isn’t curable, but there are steps that will slow the progression of the disease.

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