FTD

FTD or Fronto-temporal lobe dementia is different from Alzheimer's disease in that memory is intact for a while but other frontal and temporal lobe functions are impaired. The temporal lobe is responsible for understanding and using language so that is impaired. Visual hallucinations are not uncommon in the early stages of FTD as are tremors that mimic Parkinson's. These are called Parkinsonian symptoms, often mistaken for Parkinsons. Some have received a diagnosis of Parkinson's disease until things change. The frontal lobe, responsible for giving us social awareness, regulating impulsivity and mood, is also involved in FTD. The person may have mood fluctuations, impulsivity, and personality shifts. This is a hard disease on both the person affected and the caregivers. Caregivers, often overwhelmed with the changes that have occurred in their family member, need stability and this disease manifests itself in unstable ways. If you are dealing with FTD get as much information as you can. Join a FTD specific support group. Use the Alzheimer's Association 24/7 caregiver line. Google your state's Alzheimer's Association and get the number. The people who man the lines are well trained and available when you need them.

Care for the Caregiver...YOU

Summer is here even though it doesn't look like it in New England; mid-60s and raining. I'm home with a nasty cold, laryngitis, ear infectiions, so my orienting at my new position in psychiatric nursing is on hold until I can hear adequately to do my job. I wonder how our body knows we are stretched to our limit? It does, though, and gets sick, laying us up to rest. I think that is what this sickness is all about. Caregivers, whether informal family caregivers, or professional caregivers (social workers, nurses, homecare aides, doctors), need to tend to their need for rest. If we don't pay attention, the body makes us take a rest. What happens to you when you are forced to rest? Can you give in and let nature heal you, or do you, like so many of the caregivers we coach here at StilMee, keep plowing along, not asking for help, and not able to give the attention to caregiving that they want.
This summer take stock of yourself. Do you take time for yourself to refresh and revive your energy? I used to say to myself, "I think I need an Abby fix." referring to delicious time with my granddaughter. An hour or so with an innocent child who expected nothing but smiles and hugs, made me feel whole again.
Whether it be visiting with family members or friends who are light-hearted and can laugh, reading a good book, listening to music, sitting outdoors doing nothing but gazing at the sky, or exercising at a local gym, you MUST take time away from your caregiver duties and refresh yourself. I've learned that when I'm sick, I stay out of work, trusting the place won't fold if I'm not there. As I give over the reins of StilMee to the coaches, I find the company runs well, I can see what strength and knowledge the coaches have without me, and my body heals. I hope you've learned this lesson too. It has taken me a long time but I learned. Practice taking care of yourself. It will pay off generously.
BEv

Missing too long

I can't believe it's been two months since I blogged. At StilMee we've been busy with presentations, trainings (there is one in Tiverton Rhode Island on June 11), and welcoming a new coach for Plymouth and Cape Cod. I'm also re-entering the psychiatric nursing field in an effort to regain patient contact. My first love is psychiatry; I learned so much about behavior management psychiatric nursing. I plan to work with elders with mental health issues and dementia. I can practice and perfect my skills in working with this population. My goal; to empower each to be in control of his or her own life to the greatest safest extent possible.
We coaches are working on a 'memory' handout which I'll add to the blog. It discusses the types of memory (working, episodic, semantic and procedural), their normal function, the impaired function and the appropriate approaches/interventions that will help the person function better. To whet your appetite for new knowledge, the working memory and episodic memory are impaired in memory loss, the procedural and semantic can be tapped with cues both visual and auditory. I'll share more as I get the handout edited and checked for accuracy and readability. I promise I will blog before another 2 weeks has gone by. I'll share my new journey into psyciatric nursing; what I am learning and what the patients are teaching me about what they need.
Good to be back.. I just returned from eight days bare boating (the boat is bare, not the sailor and first mate!) It was a restful and exciting time to relax before the next leg of my journey into caregiving...Bev

Mental Illness and dementia

I have been asked more than a few times to speak to the prevalance of dementia in the aging person with mental illness. Looking online, I see little to help me. I've connected with a few mental health doctors to help me. Remembering my years of nursing in mental health units I'm not sure how much dementia I saw co-existing with mental illness. I remember at Deaconess Hospital there were people admitted to figure out whether the behaviors were from depression or dementia. Often once the depression cleared with treatment, there was little sign of dementia. I know people with late life depression are more prone to dementia, but I wonder about other disorders people suffer with for years, like bipolar disorder, schizophrenia and personality disorders. If anyone has experience in this field more recently than 10-15 years ago (like mine), let me know. Comment on this posting. I will continue to research this subject

Time Slips

I read in the Dementia Weekly last week about an activity for persons with dementia called Time Slips. The idea is to free the person from having to recall anything but what he or she wishes. This activity captures imagination. The example given was that the leader took a picture of something, in this case the Marlboro Man, and asked the participants to make up a story about him. "Do we call him Smokey?" What does he do for work? and so on. The activity lasted one hour with rapt attention. Nothing said would be wrong. It was a fun activity and called on creativity and what they wanted to remember. Great idea!

Siblings and Caregiving

Home Instead Senior Care's March newsletter addresses the challenges for siblings to share the care of a parent. It starts off "Sharing isn't always easy for sibs who grow up under the same roof. Divvying up the toys, bedrooms or vehicles may have been a challenge at your house, and sharing the daily chores could have led to familly conflict as well. Some things never change." The article goes on to say that 43% of families 'elect' one primary caregiver. In only 2% did sibs share the care.
There is a website for such families that offers good advice. www.solvingfamilyconflict.com
It is funny that this comes out this month as my team and I are taking a full day to study how families operate differently and how this impacts the crisis of an Alzheimer diagnosis. With many years of experience working with families in crisis, this was a welcome request from the team. I've been very impressed that none of the coaches has gotten entangled in a family's dysfunctional responses to crises. They are able to stand back, listen, and observe how individual members view their part in the caregiving and gently offer suggestions based on the members' willingness and abilities. One of the coach's families has routine conference calls with her to address present challenges. The family of brothers comes with an agenda. This makes it easier for the coach to be helpful NOW.
I think of caregiving involvement like a marriage. Each has to give 100% of what they are able to give. Regular conversation about changes, flexibility, planning together for 'what if' situations (like illness of the primary caregiver), and honesty about what each will offer are all great steps towards successfully working together.
If you have tips on how your family has worked together well or not, let us know. I know for my caregiving experience with my mom, each of my 2 sisters had a role that she could and was willing to provide. It was all clearly spelled out, making expectations clear. It helped a great deal and minimized bad feelings.

Communication

What is communicating anyway? It is everything we do or say that conveys a message to another. It may be a word, a look, a position of the body or an action. Think of all the ways we convey our wants, needs and feelings to others.
Like a child is, a person with a cognitive disorder is a very keen observer of behavior. As a caregiver we need to remember that affect is contagious. Smile and the world smiles with you the song goes. A smile goes a long way toward working well with a person who has a hard time making his needs known. Taking time conveying something to that person is essential. Speak slower, simpler. Maintain eye contact. Relax your body. Watch what you do with your arms and hands. Are they conveying the message you want? Crossed arms denote impatience. Arms relaxed by your side with your hands outstretched palms up denotes invitation. You can change a potentially volatile situation around by adjusting your body stance.
What about your words. Are they spoken sharply or softly. You've got to eat now is less inviting than Come with me; I've made something good to eat.
Don't beat up on yourself but observe how you relate to your family member with Alzheimer's. This is called cognitive awareness; studying yourself and your behavior. If you find your approach evokes a negative response (fear or irritation), try a different softer approach and see what the difference is. In working with mentally ill persons I learned I could work more easily with them when, aware of their being distracted by voices in their head or having negative thinking, I could minimize their angst by my approach. Relax; go slow. Slow down to the speed of LIFE; theirs.