A Guide to Caring for Aging Family Members

Archive for March, 2014

Belongings

Becky Monroe discusses the issue of what to do with belongings in her March 24, 2014, blog entry:  Finding Out Who Your Friends Are.  Dispensing with belongings collected over a lifetime is generally not an easy task. As I stated in my book, “What to Do about Mama?”

  • If your parents have been hunkered down in a home for decades, there’s a good chance they have collected a substantial number of “things”—some valuable, some sentimental, and some probably worthless from a financial point of view.
  • If your parents thought ahead and downsized their households or designated who was to get what—lucky you!
  • Another likelihood is that the task was just too overwhelming to tackle, particularly if it was not done before your parent’s or parents’ health began to fail.
  • You can count on the fact that allocating and disposing of belongings will probably be just as overwhelming for you as it was your parents.

So as hard as it is for your parents to go through an auction, Becky, you can be thankful that your father is taking a proactive approach and not leaving the job solely to you to handle when settling the estate.

Our family has had experiences on both ends of the spectrum.

My mother passed away suddenly, and ironically, less than 24 hours before her first great grandchild was born. My brother was at the hospital for the baby’s birth, but a short while later he was on a plane to Florida (talk about an emotional swing!).  As executor, he had to deal with the immediate concerns of her death and to arrange for the cremation of our mother’s remains. It was not until several weeks later that my brother and I went to Florida to shut down Mom’s double-wide. In the period of a week, we were able to dispose of her belongings, hold an informal get together with her friends, fly to Ohio (our childhood home) and have a service with family and a different group of friends. We were able to accomplish all of this because our mother had everything planned and organized ahead of time. As executor, my brother “just followed the dotted lines.”

My in-laws, who also retired to Florida, had an extensive amount of collectibles from living all over the world during their nearly 50-year marriage.  My father-in-law also died suddenly, and my mother-in-law just couldn’t face the getting-rid-of-things task by herself. She lived by the mantra, “There’s always mañana,” and left her children the daunting task of downsizing and distributing her belongings. After being widowed for ten years, health conditions made it unsafe for her to live in Florida alone. When my husband made the trip down to help her prepare to move to our hometown (and eventually into our home), he became so frustrated with the task at hand that he had everything shipped North and put in storage.

After my mother-in-law passed away, and my caregiving responsibilities ended, I pledged that I would not leave my children the burden of my messes. My husband and I have disposed of everything we don’t need or use. What is left is organized and labeled. Pictures have been mounted into books. An inventory of our belongings has been sent to the children so that they can indicate what they would like to have. The kids have decided that I’m preparing to die—which could not be further from the truth. I’m “only 65” and have 9 wonderful grandchildren that I want to see grow to adulthood. After I sent the inventory to them a second time, and they ignored it again, I just told them they’d have to fight over who gets what. Someday they will understand.

Barbara Matthews

 

An Only Childs Journey into Parent Care

Every time I think we are starting to get everything in order, something happens.    Over Thanksgiving (yes, almost 4 months ago); I stayed at Mom and Dad’s house.   I sorted.   I packed things for auction.   I took things to charity.   I carried stuff down the treacherous stair that were clearly built before there were standards and building codes.

We were in the house one day, and my dad said, “you better call your friend the auctioneer, otherwise you won’t ever get done with this.”     I asked him a couple of times, are you sure?     mom didn’t want an auction.     He said, there just isn’t a choice.    You need help.    So I spent two weeks around Thanksgiving in that house, sorting and boxing, moving things down the stairs to where we could deal with them.    I met…

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Respite

On the Caring.com website ( http://www.caring.com/support-groups), Neetsy said:

“My Mother in law has lived with us for 8+ years and is 88, she has 7 other children but they don’t want her to live with them. We also have a 14 year old granddaughter who is living with us. My question is this, My Husband and I have tickets and already planned a vacation to another state. The plans fell through for my Mother in law to stay with another of her children (they don’t want her on a Holiday) so now she doesn’t want to go. Would it be ok, for us to leave the two of them home alone with the 3 family dogs to care for 4 whole days? In case of an emergency, I have a father that doesn’t live far and can be called along with other relatives of mine.”

I commented in reply:
“Neetsy, of course we do not have all the details, but allow me to share how we dealt with this in our family. My caregiving situation was similar to yours in that we were caregivers for my mother-in-law for 7 years, 4 of them in our home with me as primary caregiver. We had major crises to deal with over the Christmas holiday 3 different years. My sisters-in-law were spending their holidays skiing out West. The last Christmas my mother-in-law was alive, my husband called his sister about taking Mom for the holiday. He was prepared for her response: “I cannot take her. We will have my grandson and 3 dogs in the house.” My husband replied, “We will have 7 grandchildren and 1 dog at ours. This is not negotiable.” Neesy, people can only take advantage of you if you let them.

As far as your granddaughter is concerned, I think it’s great that she is involved with caregiving. The experience will be important to the development of her character. My concern would be, however, that life is fragile and unpredictable. That’s a lot of responsibility for a 14-year-old. If a crisis were to occur, and the outcome was bad, how would that impact your granddaughter?

I wrote a book about my caregiving experience and those of 34 other caregivers. I am hoping “What to Do about Mama?” by Barbara G. Matthews and Barbara Trainin Blank will be helpful to other caregivers like you.”

Barbara Matthews

Burdening Our Kids

An AgingCare.com (http://www.agingcare.com) question:  “I cared for my parents until they passed. What do I do to make sure I do NOT put my kids through that?” Asked by Sunflowerpower

What is wrong with dying? I am not so sure that extending life to the point of wringing every last drop of breath out of life is the right thing to do.

 That is, unless one has unlimited financial resources to buy professional care 24/7. We should not have to put a price on elder care but for most people, the child or children end up bearing the work.

Are we sure we want to continue extending life when life is a body and no memory? Or a good mind but nothing but pain for the body?

I read these stories about all the caregivers doing their best to care for their parents at the cost of their own lives and it is so sad. Been there, done that.

I am NOT talking about assisted suicide. I am saying if an older person has no realistic future of living life on their own, what is wrong with stopping life-extending medications?

Not being a burden on our children is a major concern of the baby boomer generation, as I expressed on the first page of “What to Do about Mama?”

“I am a baby boomer—part of the ‘sandwich generation’ that is taking care of our elderly parents while still providing support for our children.  As I write this, I am feeling that the time has come.  Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation.  And they are so young!  They are, after all, our children!”  (p.1)

And again on the last page:

“In the light of my caregiving experience, and with the hope that my children will not have to face avoidable stress, I pledge that: 1) I will not leave my children the burden of my messes; 2) If my children become my caregivers I will not to be stubborn and dead set in my ways; 3) I will relinquish control (at least some of it) to them; and 4) When, in my old age, if I do the things I’ve said I won’t—they may, as I’ve told them, ‘Just show me the book!'” (p. 222)

The issue of extending life is also addressed in the book.

“I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that ‘no extraordinary measures’ be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.

I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.”  p. 160

The issue of sustaining life with medications presented a major decision making point in the caregiving situation that motivated me to write “What to Do about Mama?”

My mother-in-law questioned the Hospice nurse about discontinuing her arrhythmia drug citing contra-indications with circulation.  She was looking for a “fixable reason” for her poor circulation, which was causing increasingly numerous ulcers to form on her legs and feet.  We knew, of course, that advanced COPD (chronic obstructive pulmonary disease) caused by a fifty-year smoking habit, is not fixable, and agreed that it was time to have a family discussion about Mom’s medications. My husband consulted his siblings to assess their opinions about Mom discontinuing her heart drugs. The children were all in agreement that their mother had had a good life, and that they would rather see her go quickly and gently like their father than watch her slowly disintegrate. He then had a very difficult discussion with his mother, and she agreed that it was in her best interest to stop her heart drugs. See full account on pp. 24-26.

Barbara Matthews

Sunbury Press Publishes “What to Do about Mama?”

wtdam_fc

How will you care for your elderly parents? Matthews and Blank provide the answers.

SUNBURY PRESS BOOKS

HARRISBURG, Pa. —  Sunbury Press has released Barbara G. Matthews’ and Barbara Trainin Blank’s self-help book “What to Do about Mama?: A Guide to Caring for Aging Family Members.”

wtdam_fcAbout the Book:

Everyone is a potential caregiver.

Fifty-four million Americans already serve as unpaid caregivers to family members, and that number is likely to grow as the population continues to age.

Two-thirds of these caregivers are women—many of them in the “sandwich generation,” simultaneously caring for both children and older family members.

This book offers guidance to present and future caregivers—based on the real-life experiences of the authors and other caregivers who have openly and honestly shared their joys and heartaches. It isn’t a book by “experts,” but by people in the trenches—to help you develop realistic goals and expectations and strategies to keep your sanity through the trials and tribulations of caregiving.

Your experiences may be similar to or different from…

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He Needs to Read the Book

I replied to a question on the AgingCare.com website http://www.agingcare.com as follows:

Question:
My Dad’s moving in with my wife and I soon. How do I handle this?
Asked by tgengine

It is after all my idea but I am getting nervous. He is fine health wise but not financially. He is in the area where I grew up and many family members are as well as his friends. I live 5 states away. My brother is in the same town as my dad, my sister is about the same distance as I but neither will have him come with them. My dad and I get along very well as does my wife. We have a good size house and the kids are out. My issue is he is still active in work and mobile. I don’t know how to handle the day to day issues. I work at home. I will have to move my office from my nice sunny room to the basement to give him a living area. Finance should not be too much of an issue but I feel my siblings should contribute. How do I handle that? We are planning to add on to the house but that is a huge cost I cannot bear. We lost my mom recently, she did everything for my dad, he is progressing in getting things done but once he moves in how do we all keep our personal space? My biggest fear is him falling into depression. Currently he owns his business which my brother works in. I want him to work at least 3 hours a day (be out of the house) and go to a gym or some kind of activity. He doesn’t realize how active he is where he is now but he cant stay due to financial reasons. He is very close to his family there, once he is here it will be hard to go back and forth. I don’t want my wife and I to be his social scene. How do I get him to make friends here without him thinking I am pushing him away? Too many questions, I need something I just don’t know what.

My reply:
I quit my job to be my mother-in-law’s primary caregiver when she moved into our home. Believe me, I too, got a little nervous beforehand. MIL lived with us for four years. The first two were pretty good; the last two steadily declined. After my mother-in-law passed away, I wrote a book (What to Do about Mama? by Barbara G. Matthews and Barbara Trainin Blank). It isn’t a book by “experts,” but by people in the trenches. It provides information based on caregiving experiences (35 different caregiver stories), which will assist with developing realistic goals and expectations. In other words, we wrote the book to offer you and others like you, some insights based upon our hindsight.

The “too many questions” you’ve mentioned are “in the book,” along with a gazillion you probably haven’t even thought of yet. Trust me. Keep in mind that caregiving is never easy, and that it will get more difficult over time. This is not meant to discourage you from going ahead with your plan, but to encourage you to look ahead and be prepared.

Barbara Matthews

A Caregiving Comic

If you know me, you know that I LOVE the comics. What I love is the way the cartoonist recognizes the humor and irony in the little everyday slices of life. So, the following comic strip (which is actually more of a comic “book”) will make you smile. But in reality, it is oh so true!
“Can’t We Talk about Something More Pleasant?” by Roz Chast http://www.newyorker.com/sandbox/sketchbook/chast-parents/

Barbara Matthews

Hospice: When Should They Get Involved?

“When do you know to call in Hospice?” This question appeared as an AgingCare Daily Question: http://www.Agingcare.com

  • My mom has Dementia and is becoming very tired and is starting to not want to eat. She sometimes hides her food I give her so she can throw it away after. She is using her walker and does do some things for herself but that would only be to maybe wash a few dishes or go to the bathroom. If I tell her we are going out for a drive or a walk she is excited about that but to get her there is exhausting for her. She is 90 and otherwise very healthy…..

When I was primary caregiver for my mother-in-law, I belonged to a support group that was run through a local hospice. Our experience with hospice is well documented throughout my book, “What to Do about Mama?”

  •  “The women that run the group stressed that hospice loves to be able to help people live their life as fully as possible—that their mission is much greater than providing comfort to people on their deathbed.” (p. 20)
  • “A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.” (p. 81)

Keep in mind that a terminal diagnosis is a hospice requirement (with a life expectancy of 6-12 months). However, many people remain on hospice well-beyond that timeframe. I have even heard of cases with a diagnosis of “failure to thrive,” rather than something more specific like cancer.   It certainly does not hurt to speak to the doctor about hospice. He or she will let you know when the time is appropriate, and it never hurts to look ahead and be prepared.

Barbara Matthews

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