Today
Caregiving Coping Skill: Emotional Shifting
by Jacqueline Marcell
Posted October 11, 2005 10:00 AM
Posted October 11, 2005 10:00 AM
Posted in
Author Elder Rage www.ElderRage.com
Host Coping With Caregiving Radio Show www.wsRadio.com/CopingWithCaregiving
Listen to an overview of one of Jacqueline’s seminars:
http://boss.streamos.com/wmedia/wsradio/elder/121705/segment4.asx
WELCOME BACK ALL MY CAREGIVERS—Tell us your story! I urge you to look at your caregiving journey from this perspective and that you are determined to manage your "turn" with as much dignity, strength, calm, and even humor, as you possibly can. And, that you will not allow the experience to destroy you, make you sick and take you down. I know you will want them to care for you the best they can, and that you want them to go on and live happy lives. Realize that's exactly what your loved one wants for you right now. So, do what needs to be done to care for them, step-by-step, but be sure to take very good care of yourself, being mindful of stress, and resolve firmly in your mind that you will go through this passage with as much serenity and peace about it as you possibly can. When you start spiraling down into negativity yell, "CANCEL", and just don't allow your mind to focus and obsess on the negatives. Just don't go there! Find SOMETHING positive to put your mind on right away. I am sure there are many blessings in your life, so make a list of "gratitudes" and keep it with you to read several times a day-I promise that it will help you stay more positive. Realize that you do your loved one great honor by living a fulfilled, purposeful and happy life, which is what we all want for those we love. Remember this--you are required to make sure your loved one is safe, that they have the right doctors and medications, that they are not in pain and that they are being properly cared for. But... you are NOT required to let caregiving destroy your life-nor would they want that for you. Jacqueline Marcell
I want to share with you what I call an "Emotional Shift" to caregiving--a concept that took me a long time to get to, but that finally helped me cope with caring for two parents with Alzheimer's for nearly five years. It involves a conscious decision to change your perspective about what is happening to a loved one, and forcing yourself to stop focusing on the decline and resolving to live in the moment.
Realize that every generation since the very beginning of time has had to go through the heartache and sorrow of watching those who came before get sick, decline and pass away. And even though we all know it is an inevitable sad part of life, and even with all that is written, no one is ever prepared for how difficult it is and how much it hurts. When I came to grips and accepted that concept, I was able to embrace the fact that it was simply "my turn".
And you know what? Someday when it is YOUR turn to go, I know you won't want your loved ones to be so devastated by it that they can't function, get sick, and can't move forward with their own lives. Put yourself in that perspective now and imagine it is you who is passing. What would you want to say to your children, your spouse and the rest of your family?
Host Coping with Caregiving Radio Show www.wsRadio.com/CopingWithCaregiving
Comments (23)
Have something to say? Share your thoughts.
Posted September 7, 2006 4:33 AM
Dave
Interesting topic... I'm working in this industry myself and I don't agree about this in 100%, but I added your page to my bookmarks and hope to see more interesting articles in the future
Posted August 21, 2006 7:30 PM
My mother had dementia and I am an only child. I had to put her in a nursing which was god awful and was having to pay $4,000 a month for bad care. Because she would get up in the middle of the night and wander they eventually asked me to remove my mother. I now have her in a Residential Care Home which is wonderful but she is now tearing the buttons off of her clothes and ripping zippers off of jackets and also mutilated a pair of glasses. Is this part of the symtoms of dementia. I have not read that these symptons are part of the disease. Also, how do you have them let go of their diapers when you are trying to change them. My mom has a death grip on them. Any suggestions would be greatly appreciated.
Posted December 29, 2005 4:45 PM
I am thankful for this web site. I wish I had come across this when I was caring for my mother that had Heart trouble , but they could not operate because of her other health problems. I will just say it was a time that I thought I was along and went in a state of depressionand almost was put in the hospital myself. Now because of people trying to take advantage of my Aunt with dementia/Alheimers I had to step in and move her with my family. I had to read on this condition because I found myself losing control one day on one her bad days. It was like Jekel & Hyde personality. Then I felt bad when she did not remember what happened. Yes you will have to balance your life and be patience. Don't feel bad when you have times that you are just tired. Try to get family members to assist you. Inquire about where to go to get assistance. Like a Adult Day Care or someone to come in to releive you. Thanks again for sharing your different stories.
Posted December 21, 2005 12:30 AM
So glad that you are interested in the Virtual Dementia Tour. To order or for more information please visit www.secondwind.org, it is wonderful for family members to better understand what their loved one is going through.
Posted December 14, 2005 3:29 PM
Please email me more information on Second Wind Dreams, a virtual Dementia tour. I would like to know more about this and how I might possibly get an opportunity to take this tour. I work for the Area Agency on Aging in Texas and am very interested in this. I did not catch NBC's Three Wishes with Amy Grant and I regret that I didn't. Does anyone have a copy of the program that I might borrow?
Thanks,
Raynetta
Posted October 21, 2005 3:53 PM
I work with Second Wind Dreams, a national non-profit which makes Dreams come true for elders living in eldercare communities. Our founder P.K. Beville, Ph.D created the Virtual Dementia Tour which allows participants, such as caregivers, family, staff etc, to have a personal experience through simulated dementia. The change that occurs for the caregiver is amazing when they get even a small glimpse of what it must be like to live with dementia. It changes the way they see the dementia/alzheimer's patient. It is an incredible sensitivity training tool that doesn't take away all of the frustration of family but helps in understanding the patient and being able to "walk in their shoes" for just a moment. More information available on our website.
Please watch NBC's Three Wishes with Amy Grant on Friday night, 10/21/05 as Second Wind Dreams will be one of the dream recipients.
Posted October 20, 2005 3:10 PM
I am delighted with your blog. If anyone checks my website they will know that I too have experienced all of what other caregivers experience only it was being the primary caregiver of my beloved husband of 35 years, who died of early onset Alzheimer's disease at the age lf 59 after suffering for 7 years.
Posted October 15, 2005 5:26 PM
Carnival of Healing #12 - Fusing the Eternal With Daily Existence
Welcome to the 12th edition of the Carnival of Healing. This week I've been thinking about fusing spirit with daily life, the profound with the mundane. Nope, not just the balancing act where one does yoga in the a.m. class
Posted October 14, 2005 7:19 AM
Hi Bettye, I understand completely, as do all of us who have had beloved pets. My cat, Spunky, gave me such undocnditional love for 16 years and I did the same thing at the end trying to safe her. I miss her as much as any member of the family.
Posted October 14, 2005 12:23 AM
I wonder how many 'Third Agers' are of the age when we are facing the last few miles of our lives? Does everyone have family that is attentive; caring; paying attention to the 'aging persons' feelings? We were ALL young once, so we know all about being young. But the 'young' don't know what it is like to be aging. I believe for many of us, it is extremely unsettling when one is entirely on their own. Would appreciate others' points of view on this.
Posted October 13, 2005 1:20 PM
Hello, thank you for your article and the feedback from others. Please do not feel my comment is superficial or unimportant. because it concerns the cat, Muumuu, who was my primary/only ongoing companion for the past 10 years. She recently passed after a long bout with feline kidney disease.
when this disease was diagnosed by her vet, he offered to euthanize her then and there because she was almost unconscious and was not moving much. I said "no, if she dies, she dies in my arms, and not on your table". At this point the vet became involved in keeping her alive and we both enjoyed about another 8 months of her living before she finally gave up the ghost. We worked long and hard, and this included such things as my getting up at 3:00 AM to make food for her as her appetite was not very good, reading all the ingredients on every can and bag of catfood I bought her, spending a lot of time on the internet looking for ways to keep her functional. She did not appear to be in any pain and we had soft quiet cuddle times that my heart will never let go of. I loved her then and I llove her now. She left a few days ago and I held a quiet funeral for her and relesed her energy to the universe. Taking care of her was hard and took most of my energy and attention, but it was worth every second of it. Those we love deserve our very
best efforts for them, they did not choose their illness. I am 72 years old now and having some slight memory problems, and will probably have some sort of dementia in later years unless I can find a way to avoid that. I hope somebody cares enough to be there. Thank you for reading this.
Posted October 13, 2005 12:26 PM
WHAT ABOUT FAMILY MEMBERS WHO NOT ONLY REFUSE TO TAKE PART IN THE CARING OF A PARENT BUT AS THE ONLY CAREGIVER MAKE YOUR LIFE A NIGHTMARE.
ALL THIER INTERESTED IN IS FINDING WAYS OF TAKEING WAS EVER THE PATIENT HAS SUCH AS HER HOME, HER SAVINGS, AND PUTTING HER ON MEDICAID SO THAT THE STATE CAN PAY FOR IT, AND NOW THAT MY MOTHER HAS DIED THEY HAVE TAKEN ME TO COURT TO GET WHATS LEFT AND IN THE PROCESS MADE MY LIKE A LIVING HELL BECAUSE THIRTY FIVE YEARD AGO I WAS TOLD THAT I HAD A CARDIOMYOPATHY AND JUST BEFORE MY MOTHER ILLNESS GOT WORSE I SUFFERED AN EPISODE OF SUDDEN CARDIAC DEATH..THIS WAS SHORTLY AFTER MY MOTHER AND I TOOK CARE OF MY FATHER WHEN HE WAS DYING OF CANCER AND AGAIN WITH OUT HELP FROM FOUR OTHER CHIDREN MY MOTHER GAVE BIRTH TO.
JUST MONTHS AFTER MY CARDIAC ARREST MY MOTHER HAD TO HAVE BYPASS SURGERY AND HAD A LONG RECOVERY PERIOD FROM THE HOSPITAL TO A NURSING HOME THAT THE STATE PAID FOR THANKS TO HER OTHER CHILDREN AFTER THAT SHE CAME HOME AND I WAS HER ONLY CAREGIVER FOR THE NEXT SEVERAL YEARS....I NEVER WANTED MY MOTHER TO HAVE TO GO TO A NURSING HOME...BUT THE TIME CAME AND AFTER MY DOCTORS TOLD ME THAT I WAS KILLING MYSELF AND I COULD NO LONGER CARE FOR HER I PUT HER IN ASSISTED LIVING, THEN INTO A NURING HOME WHERE SHE DIED THIS PAST MAY........THIS COUNTRY HAS GOT TO HELP THE CAREGIVERS OF OUR ELDERLY, I HEAR THIS TYPE OF STORY DAY AFTER DAY FROM OTHER FAMILY MEMBERS....WE AS CARE GIVERS NEED BOTH FINACIAL HELP AND A PLACE TO VENT OUR FRUSTRATIONS WITH ALL INVOLVED..AND THE COURT SYSTEM THAT ALLOWS SO MANY TO PROFIT FROM OUR GRIEF.
Posted October 13, 2005 8:19 AM
The most important thing I learned... is see your loved one as they are today, let go of what they were.. keep them safe.. don't dehumanize them know that some days you will be anyone but who you really are to them.. but unconditionally love them. Even in dementia..my father says he doesn't want to be a burden and he knows I have alife to live too. He just wants to know he's loved and to have someone to give love to. Hold their hand, kiss their forehead.. touch is the way of showing love with out words.
Posted October 13, 2005 5:56 AM
Hi Annie, ohh my gosh, so sorry about your husband, but good for you for being able to detach emotionally sometimes and not let the hurtful comments get to you. My father would call me the most vile names and I cried everyday for a year. I finally reached the SHIFT, let the words go and moved forward.
I hope you will consider Adult Day HEALTH Care for him, even just one day a week, so he can get more stimulation and so you can get an important break from the stress. It helped make a HUGE difference for my parents and for me. I wrote about it in a previous post: http://blog.thirdage.com/?p=149
Posted October 13, 2005 4:53 AM
I am taking care, alone so far, of my 18-years-older, one-foot-taller and 150-pounds-heavier husband, who has been diagnosed with "possible Multiple System Atrophy" (a movement disorder, related to Parkinson's but different). He is 77, I am a healthy 59. He needs help with everything: walking to the bathroom, getting dressed, even turning over in bed. He no longer remembers how to use the cordless phone or the TV remote. He doesn't know what year it is. He is not depressed, but he's bored and often frustrated and easily exhausted, which makes him more confused. His condition fluctuates a lot; he can be pretty good, or pretty bad.
I have training (in martial arts and the Feldenkrais method) that helps me help him quite effectively without hurting myself. Emotionally, I've found that my "caregiver shift" has been to distance myself so that when he takes his frustration out on me, it doesn't hurt me personally. I can't always do this -- and when I can, it represents a loss because it means we have less of a personal relationship; I'm becoming an objective nurse. Still, it enables me to be kind and calming to him -- sometimes -- and to stop the escalation of frustration and panic.
Posted October 13, 2005 1:44 AM
Hi Callie, oh boy, yep, I lived that one. I always hesitate saying this, but I swear if you just gave him my book, he'd get cought up in it and be helped so much--as he'd start to recongnize what's happening and understand that treatment would help. Just keep planting the seed with him in a very positive way that dementia can be slowed down so he won't need full-time care as soon. AND, maybe during that time, medical science will come up with better medications and maybe even a cure. BUT, if he delays, brain cells are being lost daily, and even with better meds, they won't bring him back. Get the family to understand that too. You are a good friend. I am going to write about the driving issue in detail next week!
Posted October 13, 2005 1:35 AM
Hi Trish, thanks for your comments and yes, you ARE managing it, because you are aware of your thoughts about it--which is really the first step. I can't stress enough how important it is to make a list of "Gratitudes". (Oprah swears by it.) I have mine right here on my desk and I read them several times a day... and sometimes ten times a day when I feel I am heading downwards. I list all the things I am thankful for, including being done wih the breast cancer project! It is so amazing how thinking good thoughts will change your mood instantly. It takes a little practice, but you can't focus on negativity and good things at the same time, so let's take the good stuff!
Posted October 13, 2005 1:12 AM
To start with, the only way that a probable diagnosis can be made is to have proper medical testing.
Even though a person can have Alzheimer's disease at an early age, there are other health issues that can cause similar symptoms. As a former RN employee of the Alzheimer's Asso. I have seen other diseases that can cause the symptoms of memory loss, and judgement problems and confusion. One that I saw first hand was a lady whose family brought her in because of those symptoms listed. After having a geriatric assessment at a local university hospital, she was found to have a severe thyroid problem.
If his family is not willing to become active in his care and treatment he should be referred to the Adult Protective Services. There are other serious things that could happen because of his judgement problem. I am assuming the judgement is affected when he has refused to have the necessary medical tests.
Posted October 12, 2005 10:39 PM
Jacqueline, you are so right about not becoming negative, because it can cause us to spiral down into an emotional paralysis. I know from experience - personal and professional - how important it is to have support from others during stressful times. It's important to keep in mind that such support can be gathered from individuals, groups, or even online, like this. I do dementia care training, and my website has a new discussion forum for caregivers - professionals and families - to talk to each other and learn from each other. Thanks for inviting me to talk about caregiver issues and the forum on your "Coping with Caregiving" internet radio program on the 22nd of October at 6pm Eastern time. Your program always offers information, education, advice and support for those caregivers that feel lost and alone in their struggles.
Talk to you on the 22nd!
Beth
Posted October 11, 2005 3:17 PM
We have been increaingly concerned about our friend who has been showing signs of early onset Alzheimer's. I took him to a doctor and was told for him have a brain scan....I also took him to talk to the local Alzheimer's Assoc. person. She pretty much said it was Alzheimers. The problem...he will not have the brain scan..he will not seek advice from a doctor again. He is not a relative...all his family are back east. He is only 60 and not quite to the point of having to have someone help him except with his finances and he has arranged for all his bills to be taken out of his bank account each month. The same with his income. He is totally alone except us. We invite him to join us all the time....we love him and want the best for him but when does the family step in? I have talked to some of his family and they are aware of the situation...but what can they do? They can't force him to move to where they are so they can look after him...he's not that bad...YET!!! I have no doubt that it will get that bad. I guess my biggest fear is that he will hurt someone or himself when he drives....or someone will befriend him and take advantage of him....or he will set his house on fire.....I'm at a loss.....and I've got to admit I'm tired to being his caretaker....it's not my job.....but I can't turn my back on him either. I fear it will take some drastic event for him to finally get help..or be forced to get help....
Does anyone out there have any advice?
Posted October 11, 2005 10:47 AM
It was very helpful to read your blog. My husband and I are going through the same things with his parents and sometimes it does seem as if it will rip us apart. That you have managed it for 5 years means something. We have only had 2 years of this so far and it has been hard - not helped by the distance we live away and that we have two parents with dementia to care for. Still you are right, the important thing is to get balance and to manage 'your turn'. I was impressed by what another blogger had to say about managing difficult life events. Not turning them into a tragedy. Same sort of thing really. Just hope we manage it.
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