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Posted: January 15, 2009

Spousal Caregiving

You're Not Alone: Caregiving Views from Around the World

Bill Andrew

 It has been some time since I posted reader comments from my e-mail box, so I thought that at this dawn of a new year it would be appropriate.  As regular readers of this column know, my wife of 57 years, Carol, died this past June after 14 years of battling the afflictions of Alzheimer's disease.  As a result, I have gotten behind in responding to reader comments and questions.  I resolve to do a better job in 2009!  Keep your comments and questions coming! 

When one writes for the Internet, with a column such as this, you never know who you are going to touch with your comments and experiences.  Such is the e-mail I received from Bryan -- all the way from Tasmania, Australia!  Another popped in from Vic in Seattle and one from Ginger in New York.  I am touched by the response to this column.

_____

 Bryan, a social worker with the group Alzheimer’s Australia (Tasmania) and affiliated with the University of Tasmania, with its main campus in Hobart, writes: 

G'day Bill! 

I thought I'd write to thank you for your very helpful articles. I facilitate a male carers group for men who care for someone with dementia (usually their wives). I've shown your articles and the website to several carers in the group, and it reinforces the strategies they use, as well as giving many of the carers the feeling that it's o.k. to take a break, and not feel guilty about seeking support from respite services.  

Thanks again for your useful and thoughtful insights and sharing your experiences.

Cheers, Bryan 

Greetings, Bryan:

Thank you for your kind comments -- all the way from "down under."  After 14 years as a family caregiver for my wife, Carol, you never know where one's "giving" leads, especially via the Internet.

I, too, facilitate a support group and have done so for more than eight years.  However, mine provides support to both sexes, all ages, and various personal relationships -- many of them husbands and wives.  This mixed group provides many different aspects of the impact of being a family caregiver for a loved one afflicted with Alzheimer's disease. 

It definitely is necessary to find time away from the caregiving tasks by finding sources of "respite care" so the caregiver can take a break and get their "batteries recharged."   Feeling guilty about seeking support from respite sources seems to me to be a denial of the impact that caregiving has on the caregiver.  If the caregiver is not there to provide that care, who will be?

Once again, thank you.  We need to acknowledge that we "touch" other folks by our loving actions.  My personal mantra during this long, lonely journey was, and still is, "loving is giving . . . giving is loving."

Good day to you and God bless.

_____

Vic, who recently lost his wife, writes from Seattle: 

Dear Bill: 

I am very sorry for the loss of your wife of 57 years.  I want to ask you some questions.  My wife, Joyce Ann, passed away due to cancer on April 17, 2007.  She was from Wisconsin, and I met her at high school when she was 15 years old in Cicero, Illinois, and I fell in love with her.  She was living with a sister, as her parents were dead and so were mine.  We moved to Seattle, Washington, in 1950. She was a wonderful person and we lived a great life together. 

How does one get over the grief and sadness? I have lost over 40 pounds, yet I eat well.  I just want to be alone all the time.  When Joyce Ann was alive, we were very active every week.  We spent part of our winters in Naples, Florida, and were active day and night there!  We, like you, were married over 57 years.  Any advice for me?

Regards, Vic

Hi, Vic:

Carol and I were also from Wisconsin.  Like you, I miss Carol and our 57 years of married life together.  However, life must go on -- and it will.

If you haven't already done so, check out the availability of a grief support group in your area with one of the local hospices or perhaps your church.  You might also check with local psychologists who can help you see your way to becoming more active.  This might help you come to grips with your grief and sadness; it has for me.

While you have lost weight, I have gained weight.  Perhaps your metabolism needs adjustment.  Do you exercise?  I have started -- or at least tried -- to exercise more often by walking and rebounding to at least get my body cells working once again.  Most of my exercise for the past several years was in the form of taking care of Carol.

I have also found that my faith has helped me to deal with Carol's death.  She is obviously in a much better place with our Lord and no long suffers the afflictions of Alzheimer's disease.

Bottom line: get active in some manner, shape, or form.  Try to go to church more often -- or at least pray for Joyce Ann and for yourself.  Try the grief support group approach.  Check out www.centerforloss.com for more grief support information.  Don't be a couch potato; get out there and do things again.  Have dinner with your friends and family.  Perhaps your church has a "singles" group.  It will take your mind off your grief, at least for a little while.

By the way, grieving is the internal manifestation of your bereavement, while mourning is external. Mourning will lead to healing, while grieving alone will not.  This is from Dr. Alan Wolfelt at the above web site.

God bless you on your continuing journey of bereavement.

Bill

_____

Ginger, a family caregiver from New York, is in the early stages of this long, lonely journey of spousal caregiving.  She writes: 

Dear Bill:

I appreciated all that you wrote in this article.  I know this year will be particularly different for you, now that your wife is gone.  "Gone" seems like such a strange word.  I know that, after 14 years of caregiving, your bond is stronger than ever. 

I am heading into year three, and it is a struggle daily.  However, I think that the mind set is very important.  I struggle daily with having children and loved ones in California, and I am in New York caring for my husband.  With Medicaid and health issues both, I am afraid to make a move with him.
I mailed my 3-year-old grandchildren's Christmas gifts yesterday -- got that out of the way.  The stores are too tempting and too sad during the next month.  I have to buy my own health care now, and it is financially a disaster.  However, things should improve in January.
 

Thank you for your article and bringing the words to others. 

Ginger

Dear Ginger:

Thank you for your kind words.  You obviously have a good attitude regarding the situation in which you find yourself at this stage in your life.  While being a family caregiver for a loved one -- especially a spouse -- is difficult, it is important to have an "attitude of gratitude" during your caregiving journey.  You certainly have that and it will help you to survive the rest of the journey.

However, I would suggest that you obtain some respite time for yourself, so you can "recharge your batteries" and be better prepared to provide the necessary care for your husband.  It will also help you to help yourself so that you can reduce the stress and strain that is normal for providing such care. 

Your personal health, while apparently somewhat compromised, is critical to your ability to continue to care for your husband.  Check out the local community and your church for respite resources, and perhaps a support group related to your husband's illness.  If you do not have a "personal support team," I would advise you to develop one with your friends and church members.  Just an hour or two away from your "struggle" can be very rewarding.  Try it -- you might like it!

Continue to have that good attitude that things will improve in 2009.  May God bless you and be with you as you travel this caregiving journey.

Bill

_____

There you have it -- three different perspectives on spousal caregiving!  The first from the support group perspective, the second from having lost a loved one, and the third from the early stages of the journey. 

Please e-mail me at ASKBill@caregivershome.com with your comments and/or reactions.  I will include them in a future column with your permission.  Please provide your full name and address.  In the column, I will only use your first name and the initial of your last name as well as your city and state.  Thank you. 

WORDS TO CARE BY . . . 

"Things that were hard to bear are sweet to remember."

Seneca (5BC-65AD)


Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at ASKBill@caregivershome.com.

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