Delirium

The prevalance of delirium in dementia is well known in the hospital setting as well as in the home setting. Delirium is a sudden change in cognition and alertness and has many causes. A change of environment that is confusing, such as being in an emergency room or inpatient setting, an infection that perhaps the person cannot describe its impact on him are two major causes of delirium. Sundowning, a common increase in confusion in the late afternoon is a form of delirium. Caregivers do well to plan a way to structure that time of confusion to meet the needs of the person with dementia. A quieter environment, few if any demands on the person cognitively, perhaps company that is calming (sitting with the person, walking with the person) may help. I have a theory that sundowning is like a toddler's meltdown in the late afternoon; being over-stimulated or having lack of stimulation impacts the ability of the person to cope with demands on him. In the hospital this might be a time for a snack, calming music or a staff member sitting quietly with the elder or walking the hall with him. Group activities should be soothing and fun rather than taxing cognitively. A sensory room might fill the bill for a patient that cannot tolerate a group.

Last Days

Recently a former caregiver client I coached years ago, presented me with a book she and her dad wrote about the last year with her mom who had Alzheimer's and the first year of his being without her. I am anxious to find the time to read this story. It is called Her Final Year; a Care-Giving Memoir and His First Year; A Journey of Recovery. The authors are James Downey and John Bourke with Martha John and Kathi Bourke. Kathi was my coaching client. In the section How to Use This Book, the authors write,"...some of it is more than a little embarrassing. We have decided to share it, and show it as it was, because we deeply believe that it is extremely important that anyone entering into a care-giving relationship understand the reality of what they will likely experience. You will make mistakes. You will think you are going to go crazy. You will sometimes feel crushed by the isolation and stress. You will sometimes resent, or even hate, the person for whom you are caring. You will get into arguments with family and friends and say and do things you might later regret. These things are all completely normal human reactions to the situation you will be is."
This gives me courage again to write my second book; my journey with me mother in law Bette over 14 years until her death at 99 1/2 years of age in 2009. Thanks Kathi for reminding me to expose true feelings both good, bad and ugly at times, to help others who are going through the caregiving experience. It also is 2 books; the first exploring changes in attitudes and treatment of dementia and the second, a personal story. Perhaps because it has been almost 3 years I'm ready to finish it.

New Blog on Mental Health

Please note my new blog focusing on understanding mental health and illness. It is a slight but important deviation from my educating about dementia. The new blog is www.coach-nurse.blogspot.com Visit it and post a comment. I'm going to try to post something each week. Now with my inpatient experience renewed, I have plenty to say.

Hospitalized Elders with Dementia

I have recently taken a position as one of the nurse educators in psychiatry at a Boston hospital. I'm glad to be back in the thick of it and notice once again what a therapeutic milieu is for people with dementia. Research shows that it isn't really the ratio of staff to patients but the number of contacts the patient has with staff on any given day. This cements the practice of frequent connection with a confused and frightened elder reduces the likelihood of agitation and/or aggression. We've seen that aggression is most often the result of not understanding what is going on around them or misperceiving the intent of the caregiver. Smiling, connecting by calling him or her by their name, asking, "how are you today?'(the only open ended questions that is OK),making a positive comment about the person all go towards creating a therapeutic milieu (environment). Therapeutic communication is the practice of being clear, keeping eye contact, speaking slowly, simply and concretely. One patient who recently returned to the hospital after an outburst at the assisted living residence he had been discharged to,recognized staff's faces and voices but thought he had been on a cruise last time he was hospitalized. Sometimes delusions can be helpful I guess. Happily with the right dose of medication he was able to be returned to his new home at the residence.

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.

Caregiver Education a Must

I can't believe it has been almost a month since my last entry. Between tending to my family's needs and preparing for trainings and presentations, I've just let the time get away from me. The response we are getting for the need for education in working respectfully with those people with memory loss is both gratifying and a bit overwhelming. I've studied Alzheimer caregiving for so long I go to give a talk and think, 'surely everyone already knows this'. And then I find out that is not true. As a nurse I wondered how people managed their illness once home. Do their caregivers know what to do? Do they know how to care well? For example, having a baby in a hospital and having a nurse fetch bring him to you every 4 hours is a lot different from having that baby 24/7 and fitting the rest of your life in. I saw families take home someone with mental illness from the units I worked on and decided they needed education about the illness. I started a Family Educational Service. It was so well received, I did the same for families caring for someone with Alzheimer's. The difference of course is that the person with a cognitive disorder often cannot be fully participating in decisions about care. They often don't believe there is anything wrong with them at all. This is where education about how a person with dementia thinks is so very important. When families learn this they are so enlightened as to the reasons behind the changes in behavior. It lightens the load of guilt, frustration and anxiety. If you haven't read my book Matters of the Mind...and the Heart, do so. You will learn how people with memory loss think differently but they are still there. The mind is not the same as the brain. The brain is an organ. The mind is everything the person is. We must learn how to tap the mind, the person's personhood.

A Born Caregiver?

Are there born caregivers do you think? There are people who seem to just come forth to help, to care when they see the need. Most mothers are like this, never ceasing being a mother to her children even if they are 40 or 50 years old!
I won't be posting for a week, for example because I'll be in Michigan with my 44 year old son having surgery to repair damage to his neck during a rollover accident last June. Does he need me there? I'm not sure, but I know I need to be there to support, comfort and be a present familiar face.
I honor Alzheimer caregivers who did not volunteer for the job of caring, but found themselves elected either by the majority (usually siblings) or by default. Most seem to be willing to learn how to care well and listen to the instruction a coach gives them. That is why I wrote my book Matters of the Mind...and the Heart and why I continue to do this work. I've got 5 empathic knowledgable women who continue to help caregivers understand and manage this disease. I see that they are natural caregivers for their own family as well. I guess there are born caregivers. Thank God for them.
I'll be writing again after February 4th. Until then care well.

More about presenteeism

I can't believe I haven't written in 14 days! Amazing what a few days of snow will do to slow a person...and a business down. We had to postpone a training, and it took an hour and a half to make a 45 minute trip to McLean Hospital to present the research on caregiver education and support to the team on the geriatric unit. It was worth the trip as the team was encouraged by coach Penny and my stories of successful teaching of Alzheimer caregivers. Both Mittelman and Tremont studies show that coaching the caregiver(s)in workable approaches to care delayed long term placement up to 1 1/2 years! That is a savings for the government and helps maintain the comfort of home and family for the person with dementia.
As a company we hope to show research (there is plenty) to large companies with Employee Assistance Programs that offering employees who are caregivers support can benefit the company financially. Research states that when supported and educated about resources, employees are able to improve work productivity by a large margin. When an employee is a caregiver his mind and heart are often not present at the job. We call this presenteeism; the body is there but the spirit is preoccupied with that someone at home who is not able to care for themselves adequately. Leaving early or coming in late as well as making numerous check in phone calls reduces the number of hours the employee is giving to the company. When caregivers who are employed utilize geriatric care managers, one study said, they were more relaxed at work, free from worry, and could give more to the job. Coaches can offer the education needed to 'get mom to the day program' or work with the in home help in a more effective way.
If people know of anyone in a large company like Raytheon, Staples, Fidelity, John Hancock Insurance or the like, let me know. They need to solve the presenteeism problem.

New Year 2011

I am not a New Year resolution type at all. However, I'm recommending you all make this a year of educating yourselves about Alzheimer care. I am going to continue in my search for the best information to train caregivers with. New trends, new learnings are on the rise, making care for the person STILL HERE to thrive. Many persons with Alzheimer's rate their quality of life much higher than their caregivers give for a rating. That's because the caregiver is blindsided by the losses and personalizes it. 'What would I feel if I couldn't do that any longer?' they ask themselves. The person with Alzheimer's may not even be aware of much of his losses. I think the best thing they do is live in the present, so if the caregiver can learn how to make each 'present'meaningful and anxiety free, the person is happier. So will you be. So Happy New Year to learning! I'll share some of my learnings with you blogspot.com readers. Thanks for coming onboard!