A caregiver tip for defusing awkward situations
24/4/2009 ·
I thought I'd share a quick tip that has been circulating through our caregiver support groups. I believe the idea originally came from a caregiver and wife, Lela Knox Shanks, in her book "Your Name is Hughes Hannibal Shanks." This is now a strategy brought up routinely in our support groups.
Here is a situation that may arise for caregivers at some point: You want to take your loved one out to a restaurant, grocery store, family reunion, etc., but you are reluctant because you think that your loved one may say something or act in a way that is embarrassing to you, or may put others in an uncomfortable situation.
These are real and valid concerns. Keep in mind, persons with Alzheimer's experience a decline in judgment and language as well as other symptoms that can include disinhibition, irritability, delusions, compulsive and repetitive behaviors — all of which can be challenging to the caregiver especially when in a public place.
So, the strategy is to carry a supply of business sized cards with a saying similar to the following:
"Please excuse my (husband, wife, father, mother), they have a diagnosis of a memory impairment (or you can say Alzheimer's disease, brain impairment) and may say or do things that are inappropriate. If this is the case, please accept my apology on his/her behalf. Preserving his/her dignity is my overall goal. Thank you for understanding."
These cards can be given out discretely anytime you feel it would be helpful. The caregivers I have spoken with find that once a card is handed to someone, a potentially awkward situation is alleviated. In most cases when people understand the circumstances behind the behavior they are genuinely accepting, and often kind and accommodating. By telling others, you are emphasizing that the behaviors are part of the disease and not who the person is. In my mind, this is a way of offering the person with Alzheimer's the respect and dignity they deserve.
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Support group comes full circle
24/4/2009 ·
Last week at the support group I co-facilitate, three women shared difficult news — they had each lost their loved one with dementia within the past few weeks.
They expressed a variety of emotions including relief, guilt (guilt for feeling relief, guilt for wondering if they did enough), and profound sadness. They spoke about the void they are grappling with now.
Just weeks ago, their days were filled with orchestrating care, medications, doctor's visits, baths, and sometimes challenging behaviors. They had been spending their days worrying, grieving, and feeling overwhelmed.
Now, life is dramatically different, not necessarily better or worse, just different. Important to all of us around the table that evening was the discussion of "lessons learned" from these seasoned caregivers.
During the group they each spoke eloquently about the precious time they spent caring for their loved one, and while they would not say that this time was blissful, it was indeed special and precious. The women spoke about how they had learned to live in the 'moment' and not force their loved one to remember or anticipate anything beyond the now. And if their loved one insisted that they were their mother instead of their wife, well then, for that moment they were the mother.
Elinor Fuchs, a professor at the Yale School of Drama wrote in her book "Making an Exit:" "Actors are taught — Stay in the moment. No point in going behind (my) Mother with a little cognitive vacuum cleaner to straighten up meanings, or running ahead with plans for the day. On the stage it is always now (for someone with Alzheimer's disease)."
The women spoke about the later stages of the disease. It was at this time they learned not to dwell on their loved ones failure to "know" them through names or roles (i.e. husband, wife, son, daughter). However, these caregivers were certain their loved one still "knew" them as a special person in their life who provided a sense of belonging, reassurance, and love.
For these three women, completing a caregiving journey has brought profound life lessons, and in some (maybe peculiar) way, their lives have been enriched. More than anything, I know the wisdom and life lessons they have gained will be passed on to the caregivers sitting next to them and across the table. In the group last week, one of these women held the hand of a woman attending for the first time as she cried about her declining mother. This is the life of a support group come full circle.
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Respite care helpful but difficult option
24/4/2009 ·
My sincere thanks once again to those of you sharing your stories. There are probably hundreds who are reading and relating to what you have to say.
Obviously, there are no easy answers to the epidemic of Alzheimer's disease that brings with it nearly 10 million Americans providing 8.4 billion hours of unpaid care (mostly family). As stated in our previous dialogue, some of you find relief by attending support groups if they are available, others mentioned that writing and venting provides benefit at some level, others have suggested the importance of respite.
Once again, I realize obtaining respite care is easier said than done, there can be numerous obstacles, including our own reluctance (feelings of guilt or abandonment are common). However, none of us are equipped physically or emotionally for 24/7 caregiving. I would appreciate hearing some of your stories and experiences around respite care.
Here is a small list of the types of services (both paid and volunteer) that may be available in your communities, as well as some excellent resources and Web sites to check out.
- Adult day programs. There comes a time in the disease of Alzheimer's that leaving the person at home, even for short periods, is not an option. At the same time, taking them out only confuses and overwhelms them and you. Day programs can offer the person with dementia a safe and social environment while giving a predictable and needed break from caregiving. See link below for more on adult day programs.
- In-home paid care services. In-home services can be available in a variety of ways. Companion services provide company for the person with dementia while helping to facilitate and supervise activities. Personal care or home health aide services assist with bathing, dressing, toileting and exercising. Homemaker services help with laundry, shopping, and preparing meals and skilled care services help with medication and other medical services. Many agencies will offer many or most of these services. See link below for respite care in your community.
- Student or intern. If your community has a college you can inquire about students who may be interested in an opportunity to provide companionship and supervision to a person with dementia. I know one caregiver who found a student to provide respite and friendship to the person with dementia for more than two years.
- Volunteer through church/place of worship. Parish nurse and home respite programs are organized formally or informally at many churches. For example, at my church if a member informs our 'Care Coordinator' that they need respite care a few hours a week, a call is made to individuals from the congregation who have expressed a willingness to help.
- Department of Social Services. Check with your county social service agency. In-home community care programs may be available and are based on income.
Bottom line: Getting or accepting respite care often means that you can keep your loved one at home longer, which for most of the families I have met, is the ultimate goal.
Remember, that getting a break yourself gives you the opportunity to rejuvenate, pay attention to who you are outside of your caregiving role. This period of respite often helps you to be a better caregiver. Think of respite as a gift not only to yourself by also to the person you are caring for.
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Family members share coping strategies, experiences
24/4/2009 ·
I have poured over each and every response to my last entry on dementia and family relationships. My heart goes out to each of you struggling right now.
Many of you wrote of the conflict, pain, sadness, and resentment occurring within your families. Thank you for your honesty and candor. I have to believe that many who read these words will find some comfort in knowing that they are not alone. I know you are doing the best you can with the situation you have been presented with.
Others of you wrote that you have come to a place of acceptance and peace on this journey and within your family relationships. Here are some of the ways a few of you have coped that I feel are worth repeating:
- "... we do what we can to help our father and mother while not keeping tabs on who's doing what or who's not doing their share."
- "I was finally able to get over my guilt of having to place him for his own safety and 24/7 care. I am now taking better care of myself."
- "I have found that having a therapist has helped me deal with my sadness while I try to be the best caregiver I can be."
- "You can't be bothered with what others will not do."
- "For me, my mom was my best friend, and I gladly took care of her. I loved her, and miss her to this day. Her Alzheimer's was the best of times, the worst of times. The toughest thing I ever did, but the most satisfying. Miss you, mom."
- "What about some respite help, some companion help? These are things, small things yes but would enable an outlet for a short time. And please joint a Support Group. Find someone to stay with your loved one so you can attend. You DO owe it to yourself."
On that note, I ran across a letter I received from a woman in my support group. She was a caregiver for her mother and experienced a strained family relationship. She wrote:
"Unless you have a loved one who suffers from some form of dementia, you will never know the suffering that transfers to the entire family and mostly to the caregivers. The suffering is life altering. However, the suffering is manageable when you find out you are not in this alone. Even though I could not keep my own family at peace, I became a part of another family — a wonderful, loving, compassionate, and supportive family. This family (my support group) gathers monthly to give each other the courage, strength and support to go on for another day. We learn how to break down difficult times to manageable moments. Right now, they are my closest family, we share an incredible bond."
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Dementia journey affects family relationships
23/4/2009 ·
In several care partner support groups these past couple of weeks, the conversation has turned to the topic of relationships. More specifically, the changes that occur within roles and relationships when someone in the family has dementia.
I was asked if sibling relationships suffer when a parent has dementia. Often, siblings have varying opinions about how to deal with decisions they are faced with at the present time, as well as those down the road. Furthermore, each member of the family is experiencing grief and loss over the situation in their own way and in their own time.
Some members of the family may feel anger or resentment, some may cope by seeking out information and support, while others can remain in a place of avoidance or denial for some time. There can be family conflict and less cohesiveness. Yet, sometimes on this journey families come to a place where they say the disease has brought them closer than ever. I am wondering what your experiences are?
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