Category Archives: Caregiving – Dementia

“Could a vitamin or mineral deficiency be behind your fatigue?” (short article, Harvard)

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Fatigue can be a symptom in all of the disorders in our local support group.  Today’s Healthbeat email from the Harvard Medical School points to one mineral and two vitamin deficiencies that may cause fatigue.  It might be worth having an MD check one’s vitamin levels to rule these out as problems if fatigue is present.

Robin

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Excerpts from

Could a vitamin or mineral deficiency be behind your fatigue?

Healthbeat
Harvard Medical School
August 1, 2015

The world moves at a hectic pace these days. If you feel like you’re constantly running on empty, you’re not alone. Many people say that they just don’t have the energy they need to accomplish all they need to. Sometimes the cause of fatigue is obvious — for example, getting over the flu or falling short on sleep. Sometimes a vitamin deficiency is part of the problem. It might be worth asking your doctor to check a few vitamin levels, such as the three we’ve listed below.

* Iron. Anemia occurs when there aren’t enough red blood cells to meet the body’s need for oxygen, or when these cells don’t carry enough of an important protein called hemoglobin. Fatigue is usually the first sign of anemia. A blood test to measure the number of red blood cells and amount of hemoglobin can tell if you have anemia. The first step in shoring up your body’s iron supply is with iron-rich foods (such as red meat, eggs, rice, and beans) or, with your doctor’s okay, over-the-counter supplements.

* Vitamin B12. Your body needs sufficient vitamin B12 in order to produce healthy red blood cells.  So a deficiency in this vitamin can also cause anemia. The main sources of B12 are meat and dairy products, so many people get enough through diet alone. However, it becomes harder for the body to absorb B12 as you get older, and some illnesses (for example, inflammatory bowel disease) can also impair absorption. Many vegetarians and vegans become deficient in B12 because they don’t eat meat or dairy. When B12 deficiency is diet-related, oral supplements and dietary changes to increase B12 intake usually do the trick. Other causes of B12 deficiency are usually treated with regular injections of vitamin B12.

* Vitamin D. A deficit of this vitamin can sap bone and muscle strength. This vitamin is unique in that your body can produce it when your skin is exposed to sunlight, but there also aren’t many natural food sources of it. You can find it in some types of fish (such as tuna and salmon) and in fortified products such as milk, orange juice, and breakfast cereals. Supplements are another way to ensure you’re getting enough vitamin D (note that the D3 form is easier to absorb than other forms of vitamin D).

Learning to communicate and enjoy time with someone with dementia

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This is a very sweet article from The New York Times about a son who learns to communicate and enjoy time with his mother with Alzheimer’s.

Here are the key excerpts:

My oldest brother [Mark] … talks to my mom by phone every day. He enjoys trading gibberish with her in their incomprehensible conversations. “She’s completely unplugged from reality and disoriented to time and space,” Mark says. “It doesn’t make any sense, so why not have a good time?” At first, I worried Mark’s antics were making fun of my mom — laughing at her, rather than with her. Then I tried it. I stopped concentrating on the content of her words and, instead, went along with every twist. Once she said she wanted to go somewhere for a picnic. “Why, Mom?” I asked. She said: “So we can boil the chicken.” Rather than grilling her about what she meant, I asked what kind of chicken we should boil and where we should hold this picnic.

Mom’s private caregiver, Ellen Knapp, … taught me how to talk to Mom in this new phase of her life. The technique is called validation, and Ellen learned it from a veteran author and psychologist, Naomi Feil. As Ms. Feil explains it to me in a phone interview, this translates to “accepting whatever behavior the person has and trying to become a part of it.” For example, a carpenter with Alzheimer’s might pound his fist against a wall. The wrong way to talk to him would be to say, “Why are you pounding the wall? Stop it!” The right way would be to ask, “Is that wood made out of oak or pine?”

I’m not exactly a Jedi knight of this technique, but I find it relaxes Mom and makes her more easygoing and less frustrated. The key, for me, is to stop judging or trying to analyze or change her behavior. That means fewer questions about her past, even if that subject is difficult for me to avoid — in the past, she was my mom! That’s what I really want to talk to her about, not chickens and picnics. Occasionally I can’t resist and I ask whether she remembers Dad, her husband of 54 years. Sometimes she says yes. Sometimes she says no. It’s a dead end either way.

Here’s a link to the article:

www.nytimes.com/2015/07/12/opinion/sunday/my-mother-lost-and-found.html

SundayReview | Opinion
New York Times
My Mother, Lost and Found
By Steve Knopper
July 11, 2015

Well worth reading…

Robin

“The 2 Most Important Caregiver Tips”

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In this short article in US News & World Report, the author limits her discussion to the two most important caregiver tips.

The two tips are:

#1 – Learn as much you can about your loved one’s disease or illness to know what to expect. Otherwise, you’ll be driving blind.

#2 – Care for your loved one the same way you would want to be cared for if you were living with the disease. After learning as much as you can about [your loved one’s illness], put yourself in your loved one’s shoes by asking yourself, “What fears and uncertainties would I feel in the face of this…diagnosis?”

I think this is good advice. But #1 is hard to achieve when the specialists aren’t even able to say with better than 50/50 odds what the neurological diagnosis is! So you learn all you can about one disorder only to learn a new diagnosis a year or so later.

The author notes that someone at the Lewy Body Dementia Association described LBD as a disorder that: “walks like Parkinson’s and talks like Alzheimer’s.” That sounds like a good description for some with LBD.

Here’s a link to the article:

health.usnews.com/health-news/patient-advice/articles/2015/05/01/the-2-most-important-caregiver-tips

The 2 Most Important Caregiver Tips
How to survive, thrive and even find joy in caring for a loved one with dementia.
US News & World Report | Health
By Brenda Avadian
May 1, 2015 | 9:00 a.m. EDT

Robin

Caregiver stress and taking care of yourself

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Someone in our local Brain Support Network group sent me a link to this good article on caregiver stress.

Several sources of caregiver stress are identified:

  • no “off” time
  • balancing relationships
  • role reversals
  • volatile personalities
  • economics
  • difficult decisions

Symptoms are caregiver stress described in the article include:

  • depression
  • anxiety
  • irritability
  • denial
  • social withdrawal
  • health problems

Finally, the article discusses tips for overcoming caregiver stress.  Here’s a link to the article:

adrenalfatiguesolution.com/caregiver-stress/

Caregiver Stress: Remembering To Take Care Of Yourself
by Fawne Hansen
The Adrenal Fatigue Solution

Robin

 

Anticipatory Grief – three short articles (and some excerpts)

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Anticipatory grief is the loss we feel while our loved one is alive and dealing with a life-threatening illness.  This grief can be felt by caregivers, patients, family members, friends, etc.  Someone recently posted several articles on the topic of anticipatory grief to an LBD-related online support group.

The three short articles are:

“Coping As You Anticipate Loss”
By Marty Tousley, 2009
www.opentohope.com/coping-as-you-anticipate-a-loss/

“What is Anticipatory Grief”
By AZ Center for Loss & Grief
www.griefcounseling.us/what_is_grief.htm

“Anticipatory Grief Symptoms: What’s the Big Deal?”
By Harriet Hodgson, 2005
www.careforce.ca/Anticipatory%20Grief%20Symptoms.pdf

I’ve copied below a few excerpts from these three resources.  If you only read one, I’d recommend the Marty Tousley article (or the excerpts).

Robin

 

www.opentohope.com/coping-as-you-anticipate-a-loss/

Excerpts from
Coping As You Anticipate A Loss 
By Marty Tousley, 2009

Grief does not wait for death to happen; it occurs both in anticipation of and following a loss. Extended illness, disability, severe accidental injury, a terminal diagnosis or the aging and decline of an elderly family member can produce what is known as anticipatory grief and mourning. We find ourselves reacting and continually adapting not only to an expected loss, but to all the losses – past, present, and future – that are encountered in that experience.

Anticipatory mourning begins as soon as we become aware that death may happen. It begins when a life-threatening illness is diagnosed or a terminal prognosis is given, we understand that there is no cure, and we realize that death is likely or inevitable.

Issues of grief and loss are inherent in the care-giving process, and grief is experienced by everyone involved — whether we are the patient grappling with the illness or disability, or the family member, partner, close friend or caregiver who is intimately connected with and looking after our loved one. We are coping not only with our own feelings of grief and loss, but also with physical and mental fatigue. We may feel overwhelmed with all the financial, legal, medical and personal responsibilities associated with care-giving.

In some ways, anticipatory mourning can be harder than the grief we experience after the death, because when we are waiting for the death to happen, we are on constant alert, living in a state of emergency over an extended period of time.

On the other hand, this period offers the benefit of preparation time, as we and those close to us begin to think about our life without the one who is dying, and how we and our loved one can use the time remaining to reflect, to prepare for the future, and to finish unfinished business.

www.griefcounseling.us/what_is_grief.htm

Excerpts from
What is Anticipatory Grief? 
By AZ Center for Loss & Grief

Anticipatory grief is … a grief we keep to ourselves. We want little active intervention. There is little or no needs for words, it is much more of a feeling that can be comforted by the touch of a hand or silently sitting together. Most of the time in grief we are focused on the loss in the past, but in anticipatory grief we occupy ourselves with the loss ahead.

When a loved one has to undergo preparatory grief in order to prepare for the final separation from this world, we have to go through it too.  We may not realize it at the time. … Even if you go through any or all of the five stages ahead of the death, you will still go through them again after the loss.

…Experiencing anticipatory grief may or may not make the grieving process easier or shorten it. It may bring only feelings of guilt that we were grieving before the loss actually occurred. … Not everyone experiences anticipatory grief and if they do, certainly not in the same way.

www.careforce.ca/Anticipatory%20Grief%20Symptoms.pdf

Excerpts from
Anticipatory Grief Symptoms: What’s the Big Deal?
By Harriet Hodgson, 2005

You don’t talk publicly about your grief because you’re afraid of the reactions you’ll get.  It takes courage to    “grieve in a society that mistakenly values restraint,” according to Judy Tatelbaum, author of “The Courage to Grieve.” 

…The worst symptoms of all — anxiety and dread — illustrate this point.  Robert Fulton, PhD and Robert Bendiksen, PhD discuss anxiety in their book, “Death & Identity.”  You expect your loved one to die, they explain, but “exactly when it will take place is not known.”  …  If you feel this badly now, how will you feel when your loved one is gone?

Talking about feelings will help you to relieve anxiety.  Instead of brooding alone, talk with a trusted friend.  Your church and local hospital or hospice may have grief support groups.

…Depending on your loved one’s illness, you may grieve for a year, five years, 10 years, or more.  …

A sudden death hits you like an explosion, [Edward] Myers explains, and sends you into shock, whereas a slow decline “arrives more like a glacier, massive and unstoppable, grinding you down.”  Dealing with the symptoms of anticipatory grief gets harder with each passing day.