Monday, October 26, 2015

Sleepless Nights and Dementia

Sleepless nights. We all have dealt with this—caregivers especially. When a loved one is up for whatever reason, they have to be too. You never know what might happen.

I am blessed in a way; I do have many sleepless nights, but I am still at an early enough stage where I can get up, and at least Phyllis June can stay in bed.  I think we went to bed about 11:00 PM last night. It took me a long time to get to sleep, and I was wide awake at 2:00 AM.


When this happens, it throws my entire day into a tailspin. From the time a patient wakes up until the time they go back to sleep, their mind is racing.  It's just what happens. We become mentally drained because of this disease, and when you add the lack of sleep into the mix, then you have a real disaster waiting to happen.  I can only imagine what it is like to try to care for your loved one with only three or four hours of sleep daily—sometimes less. This becomes a bad situation for everyone involved. The caregiver obviously is on thin ice from lack of sleep, and even their decision making can be impaired at times because of this.  I will definitely lay down sometime later today, but it sure puts a damper on what is already an impossible situation at times. As I said, we patients are constantly fighting with memory deficits and being mentally drained. I don't know what is worse: dealing with this or trying to explain to people that there is just nothing that can be done for this situation.  I take enough medication at times to drop a fully grown elephant. I also take sleeping pills prescribed by my doctor. They don't work, and they never have. A lack of sleep is something I have dealt with for years now.  I remember my doctor telling me to get sleep whenever I can. It doesn't matter if it’s in the middle of the day. In other words, don't be concerned that your loved one seems to be sleeping too much and at odd hours.  My guess is that they rarely get any good, restful sleep at all, and if they do, it's very rare. Like I said, I have been battling this lack of sleep for as long as I can remember.


One day there will be something that can be done for the sleepless nights patients have to deal with. And, when that happens, that will result in the caregiver being able to get more restful sleep as well. There just isn't anything that can be done right now…  I have done everything to try to get a restful sleep. I have heard all of the usual suggestions and tried many different things—all to no avail. Some people have suggested attending a sleep clinic. However, the problem is that this issue stems from dementia. It isn't something that can be analyzed and "fixed" in a sleep clinic, for example.  The one thing I do know is that there isn't anything on TV at two in the morning. Thank God for Memory People… I usually read some posts that I had previously overlooked during the wee hours of the morning.

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Saturday, October 24, 2015

A Self-Help Approach to Coping with Caregiver Stress



 
Caregiving can leave us with a kaleidoscope of emotions that is ever-changing and often tumultuous. Many of these emotions induce guilt. While therapy is recommended for people who are having a deep struggle with negative feelings they cannot lay to rest, often there are steps that we can take by ourselves to handle our feelings in a healthy manner.

Koko Kawasaki, a former graphic designer, was inspired to earn her MA in Gerontology by her experiences as a family caregiver. Her father suffered from multiple health issues including stroke and vascular dementia. Koko offered me some insight into how she handled her personal self-care as a caregiver.   “Self-care is a necessity for both physical and mental wellness. I initially did not think of caring for myself as I thought that it would take time away from caring for my father. In time, I realized that if I didn’t make time for self-care, my attitude and my ability to provide care were both negatively affected. In hindsight, I believe making time for myself enhanced my caregiving experience. “My personal self-care regimen consisted of daily physical and spiritual activities. For exercise, I took brisk walks on most days. Even if I had only 20 or 30 minutes, walking helped me to feel better immediately. My spiritual practice was also vital to self-care. As a Buddhist, I chant daily.

As a caregiver, chanting helped me to stay focused, yet flexible. My Buddhist practice gave me spiritual nourishment that sustained me during the difficult times I faced as a caregiver. Other things that I did to self-care included short weekend getaways with my spouse (when I could), and spending time having coffee or dinner with friends.”  While in undergraduate school, Koko developed a program called “Encircle” that would provide caregiver support through community workshops and other resources.  In her presentation, she wrote, “As the demand for caregiving grows, it places the population of family caregivers at risk for poor health, strained family relations, financial difficulties and lower qualities of life for both caregivers and care recipients.” Her Encircle program included:
  • Workshops on self-care, eating well and exercise
  • Neighborhood walk/talk groups
  • A “Buddy system” with a particular caregiver to provide respite and friendship
  • Phone check-ins with a buddy
  • A video library of funny comedy films
  • Positive incentives for healthy behaviors
 While Koko’s program was experimental, there is hope that similar programs will begin to catch on around the country. They are certainly needed. Meanwhile, caregivers can accomplish some of these objectives by connecting with community resources found on their state websites.  Personally, I’m in agreement with all of Koko’s ideas for self-care including the use of spiritual practices. As a Christian, I find prayer throughout the day helpful to me in many ways, but perhaps most importantly it helps me understand that I’m not alone in what I am doing and that there is a purpose in my caregiving that’s beyond my own comprehension. I also find comfort and relaxation through meditation.

Additional suggestions for self-care
  • Mindfulness exercises like yoga and journaling can be soothing.
  • Art—forget being good. Just get some paints or pencils and canvas or paper and let yourself go. Draw anger, draw depression, draw grief. Draw what would make you happy. It helps to put your feelings out in front of you.
  • Music—Listen to music that relaxes you, music that brings out emotion or music that brings back a simpler time. Learn to play an instrument that you’ve always wanted to play. Again, being “good” isn’t the point. This is about doing something that you might enjoy and that takes you out of the present.
  • Online games for emotional health abound on Pinterest, Twitter and Facebook. Go to these sites or browse generally to see if you find something that is doable for you. Many of these are meant to relieve stress, anger and self-doubt.
  • Positive self-talk training. Again, online searches on Pinterest, Twitter and Facebook, or a general search, can help you find free training to learn this important coping mechanism to help you shift away from negative thoughts and feelings.
  • Physical stress relievers such as soft squeezable tubes and balls similar to those used for occupational therapy, as well as exercise programs such as walking with a friend or using a video for guidance as you exercise, can help you feel healthier and more in tune with life.
  • Do something for someone else. This can mean helping out at a place that feeds the homeless, helping single mothers find clothing for job interviews, or teaching crafting ideas to people who have a need to learn a therapeutic skill. Although caregivers tend to have little free time, continuing to give back to others can expand your social networks, give you a change of scenery and help to give you purpose outside of caregiving. Call your community center or a community help line for ideas. Someone there can likely point you in the direction of people who could use your services.
  • Pet shelters have pets for adoption, but don’t take on a pet unless you truly have time to devote to an animal. However, you can visit the shelters and hold kittens or puppies or even train as a dog walker.
  • Attend an appropriate support group. There’s nothing like being a part of a group of people who understand what you are going through. This can be therapeutic both online and/or in person.
 No single approach works for everyone, but one or more of these suggestions may help you improve your quality of life. Pick and choose. Create your own wellness program. Believe that you are worth the time.  Also, never forget that professional counseling is an option. Self-care works for many of us, but when thoughts and feelings become too dark and overwhelming, or self-care isn’t having the effect that you’d like, finding the right counselor could be your answer.  Take care of yourself for all concerned. A healthy, grounded caregiver can, just through body language, pass on the positive emotions to the care receiver so that everyone wins.


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Sunday, October 18, 2015

How To Choose Housing for A Person With Dementia




 

Choosing Housing for A Person With Dementia


When choosing a new home for a person with dementia, it is important to keep in mind some basic guidelines. While the decision to seek residential care may be difficult, the following tips are meant to help you stay focused on the task at hand.
  • Be clear about the particular special care needs of the person with dementia before beginning the process of selecting a residential setting. Keep those needs in mind as you review the literature for each facility and when you tour a facility. It's best to write them down and take them with you. Also, think about the special needs and preferences of your family. For example, do you need a residence that can provide kosher food? Is the facility located in an area that is accessible to family members who would like to visit your loved one on a regular basis? Your local Alzheimer's Association (www.alz.org) is an excellent resource for help in determining your family's needs and they can provide literature as well as guidance to help you to make the best possible choice for everyone involved.
  • Know your budget. It's easy to lose sight of what you can and can't afford when dealing with an emotionally charged issue. This is especially important when choosing an assisted living facility for which there are few or no outside sources of funding and private funds must cover the entire cost of care. In addition, residential care for people with dementia is more expensive than comparable care for those without this disease.
  • Take as much time as you can to learn about the different facilities. Alzheimer's experts believe that it is best to visit between three and five places before deciding on one. You may want to have a friend or another family member go with you when you make these visits. It can be helpful to have both the company and the observations of a person who is less emotionally involved with the process. The more you are able to see, the more comfortable you will be with your final choice.
  • Check whether the environment of the facility is specially designed to accommodate dementia behavior. A calm and pleasant setting contributes to the overall treatment for people with dementia. Many of the newer assisted living facilities have a "home-like" atmosphere with communal kitchens staffed and supervised 24 hours a day. These facilities often have communal lounges furnished like living rooms to encourage socialization among residents, staff, and visitors. The physical setting should provide cues for the residents that promote independence such as a color-coded path for finding the way back to a common area should a resident become confused. Some facilities hang a collage-type box containing personal mementos and photos on room doors to help residents recognize their rooms. Ask what safety systems are used to deal with wandering. For example, are the elevators and doors alarmed? Do the residents wear wrist or ankle bracelets that set off alarms if they accidentally leave the dementia unit?

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