Sunday, February 22, 2009

Caregivers... Who Helps... and Are Women Better Than Men?

If you take a good long look at several family situations like this, you see two things:

  1. The majority of the care and decision making falls to one person.
  2. That person is usually (but not always) a female.

I have observed countless families in a caregiving scenario where more than one sibling or other family member who is perfectly able to provide assistance, yet much of the responsibility falls to one person. It's almost like there is a "natural order" where the majority decides, even subconsciously, that "the one" is better suited to handle such things. The reasons for this are varied, but it can be that the others view this person as more organized, more caring, or more able - meaning this person has more spare time, is better off financially, and/or is more knowledgeable. That doesn't mean these people are right, but it might explain some of the "how and why" this happens.

With regard to men vs. women, some of that is our fault as women. We have, by nature, looked after our men for generations and set ourselves up in the role of caregiver and nurturer. Couple that with the fact that men, on the whole, either would just rather not deal with such things - or they feel inadequate to do so - and it is easy to see why many men eagerly step into the shadows and let the women handle this. Another factor could be that men tend to deal with such issues - particularly unpleasant ones - with a matter-of-fact, let's-just-get-this-done, approach. My friend phoned her brother (who lives in another state) to discuss their mother's diagnosis of "vascular dementia" (which is a nicer way to describe something akin to Alzheimer's) and his immediate comment was, "Put her in a nursing home!" Their mother wasn't ready for a nursing home, but she did need extra care and attention. I don't think this man was cold and uncaring as much as he simply did not understand how to address this issue... and he felt inadequate as a caregiver and assumed his sister would be much better suited to this task.

I have also seen men who were excellent caregivers... attentive, astute, and truly wonderful. However, I must say that most often, this happens when there is no one else, and the man has no choice. If the person who is needing care has three sons, for instance, often a wife will step in and handle much of the work and burden for her husband and his brothers. And in the defense of the men, they may have no experience on which to draw and feel inept - and as I have mentioned, much of that is our fault as women for spoiling and coddling our men! But...I have seen cases where men have learned - even if by default - how to be excellent caregivers. We’re not talking rocket science here!

While my 96-year-old grandmother lives alone in her own home (thankfully), I am still her primary caregiver, meaning that major responsibilities and decisions about her care and well-being fall to me. I handle her bill paying, many of her errands and shopping duties, her medical appointments and medications, the mountain of paperwork involved in keeping her enrolled in Medicare Part D prescription drug coverage, Home Health assistance, and other programs that aid and assist her. Three times she has been placed in a nursing home for several weeks to a few months of rehabilitation after falls or illnesses, and I completed the massive paperwork to admit (and release) her, kept up with nursing reports and therapists, did her laundry, and kept an eye on her and the nursing home staff who cared for her.

My dad died nearly 10 years ago, and for a couple of years my mother was available to help with some of the needs for my grandmother (her mother-in-law). But 10 years ago, my grandmother could still manage a lot of things for herself, so there wasn't that much to do. My mother remarried in 2002, and she and her husband travel a lot. In 2003, my grandmother fell and had to go to the nursing home for rehab. Mom was leaving the next day for a summer-long trip, and she handed me my grandmother's checkbook and said, "You'll need this, and you will probably need Power of Attorney." I have a sister who lives in the same community, and she will help me when I ask, but pretty quickly (as is often the case) everyone seemed to fall to the wayside and give me a wide berth as the primary caregiver. Over the last six years, my grandmother has come to depend on me heavily. Yes, she does still live alone in a home my parents provided for her, but when the least little thing arises, she turns to me. If her telephone malfunctions, she calls me to fix it. If a light bulb burns out, she wants me or my husband to put in a new one. If she gets a notice in the mail about a medical appointment or an insurance report, she calls to let me know. And all of this is fine... I don't mind. But I just know she probably isn't calling anyone else!

I take my grandmother to get her hair done every week, and I shop for her and run any other errands she needs handled. I dispense her medication for the week into a set of those daily pill dispensers. I fix anything that is broken (if I can) - or arrange for someone else to do so... change any light bulbs, fill her bird feeders, and do anything else she feels needs attention. But for the most part, at this point I can handle these requests all in one day. I know... I am very fortunate at this moment! I also know that, as was the case last winter, a fall or illness could send her to the hospital and/or nursing home, and she would require my help and attention every day - almost around the clock - for several weeks and months.

But what is the solution to being “stuck” as the single caregiver? How do you keep your sanity? First of all, I have learned that it is okay to ask for help. My grandmother does have Home Health aides who visit several times a week and help her with her bath, change her bed and check her vital signs. She has a housekeeper once a week. She has a strong network of friends from church who visit with her often - some even daily.

I ask for help from agencies that provide it. The only thing I can’t seem to accomplish is Meals on Wheels – my grandmother won’t eat them. This would be a great help, as it would cut down on her cooking, which concerns me. It would also provide her with a nutritious meal each day, and I would feel like she was eating fairly well. But she has balked at this idea, and I can’t forcer her to get the meals. I don't hesitate to ask my mother or my sister - or even my 19-year-old niece - to help when I get in a bind. When I had the flu and couldn't get out of bed, much less be near my grandmother, I asked my niece to drive her to the beauty shop and buy her groceries. When I needed to travel with my husband to visit his family in another state, I asked my sister to step in and see after my grandmother for a week. My grandmother doesn't think women know how to "fix things" around the house, so she doesn't hesitate to ask my husband or my mother's husband to do these projects. They are both glad to help, when available, and I let them!

My pastor gave me some great advice a few years ago. I was phoning my grandmother EVERY DAY to check on her, and by the time we hung up, we were arguing. Often she hung up on me. I didn't understand her - I wasn't attentive enough. Even if I said it was a beautiful sunny day - she found a problem with it. I was at my rope's end. My pastor told me that I did not have to do this alone - that there were others who were phoning her and visiting her. I did NOT have to call every day. In fact, my "errand day" once a week was sufficient contact, unless something came up that necessitated we talk more frequently. He also told me that "'No!' is a complete sentence!" That was probably the best advice I ever received.

So while you don't have to tell your loved one "No!" about everything, there are probably little things you can refuse that won't make a hill of beans' difference to them, but will give you a little breathing room. You can tell when people are sincerely offering to help you - and when they are just being polite. If the offer is genuine and you need the help or a break, accept it. Call your siblings and give them a specific job to do... "I need you to come and sit with Mom for an evening." or "Dad has a doctor's appointment on _______ and I would like for you to take him."

Pick and choose the tasks with which you need help. If you are in charge of your loved one's medications, it's probably best if you handle prescription issues and medical visits. You know the questions to ask, and getting others involved in the mix can lead to confusion. There are some things that it will be better for one person to handle. However, there are plenty of ways that others can assist you... and sometimes they are just waiting on you to ask them.

Finally, remember that anyone can learn to be a caregiver, regardless of their gender and blood relation. Some will be better at it than others, and those who have no heart for it may always be fairly lousy and merely going through the motions. In caregiving, it truly does "take a village." As primary caregivers, it is up to us to make sure we keep an open mind, a thick skin, and our "radar" up for opportunities to ask for help.

Saturday, February 21, 2009

When One Parent Dies and Leaves Another

Here are some reflections from Beka Miles, whose mother passed away January 29th. She writes of her dad, a retired Methodist minister who is learning to make his own way without his beloved JoAnn. Beka, meanwhile is in Fort Worth, some five hours away, juggling the responsibilities of her own two children (ages 8 and 10), her husband, and a career. Like many of you, she is struggling with the heartache of wanting to be in two cities at once... of worrying about her dad and trying to be attentive to his needs from a distance, while meeting the needs of her immediate family. This is a one-day-at-a-time, take-life-as-it-comes proposition, as she is discovering:

Dad tells me that yesterday he experienced another first: He bought his own underwear for the first time in his life. Can you believe how pampered that man was? He told me, “Your mama went off and left me, so I had to go out and buy my own drawers.” (For the record, she didn’t exactly “go off and leave him.”)

Dad tells me he also wrote a large check for the first time in 5 or 6 decades. Mom always handled their money. Soon after Mom and Dad were married, they went down to south Louisiana to see Dad’s family and have a wedding shower and celebration. Dad’s grandmother, who had just met mom for the first time, pulled mom aside and told her, “Honey, if you want to have anything in this life, get hold of the money now! These people [meaning her children, grandchildren and ex-husband] don’t know how to manage money and will go off and buy things they don’t need and give the rest away. Get hold of the money!” So, mom always took care of the money. Knowing that dad would often give away whatever cash he had on hand, she told me once that she would always put a modest enough amount in his wallet so that he could give it away without wrecking their finances. Now Dad is learning to manage the money on his own. . . . Maybe I should ask him what that big check was for.

Although his standards aren’t as high as mom’s, dad is learning to keep up with the household. You may remember that day before yesterday, Dad bought underwear for himself for the first time in his life. This morning he was telling me that when he got up to dress, he couldn’t find that package of “new drawers” and was looking all over for it. So I said, “Dad, you DO know that you need to wash that new underwear before you wear it.”
“Darlin’, I ain’t gonna warsh NOTHING I don’t have to warsh.” (Both Dad’s standard of cleanliness and his use of the English language have deteriorated precipitously since mom’s death. And he’s cussing too, but who’s going to complain under the circumstances?)

My older brother John has been there, and this morning, John and Dad went down to change the sheets in the cottage in preparation for a relative who will be there this weekend. Dad told me, “When we were changing the sheets, John showed me how to pull the sheets tight and to smooth them so it looks real nice. I can’t remember when I changed the sheets before.”

One of my spies on the ground in Hot Springs tells me that he is also making his bed everyday and picking his clothes up off the floor (which he was not doing for awhile.) This was a great complaint of mom’s father. After mom and dad married, it irked “Papa Ridgway” that dad didn’t pick up his clothes off the floor but just left them there for mom to pick up. (That’s something Dad has long regretted.) When John and Susan were returning from their honeymoon, they stopped by to spend the night with our Ridgway grandparents. Papa Ridgway pulled John to the side to give him advice about married life. He said, “Son, pick up after yourself. Don’t leave your drawers lying around on the floor.”

So, dad’s learned how to buy his own drawers and to pick them up off the floor. Dad told me this morning, “I’m managing. My house is clean. I’ve got food in the refrigerator. I cook my meals. I go walking. I am writing checks. I’m keeping my bills in order. I’m learning. [long silence and then a loud affirmation] Ain’t NOTHIN’ gonna to separate me from the love of the Lord and my family.”

I would love to hear - and share - how others are coping with this same situation... what challenges have been presented to you and your loved ones? How are you juggling your elders and your younger family members and the responsibilities toward each? Send me your comments and help build a network of support for these and other issues we are facing. Thanks!

Tuesday, February 17, 2009

Spunky Seniors

Ruby is my grandmother's best friend. She just celebrated her 90th birthday. Ruby is truly amazing... she doesn't look her age, and she certainly doesn't act it. Besides living alone and doing all of her own yard work, Ruby sews, cooks, and she just renewed her driver's license! Ruby works two days per week for Gladys, another lady who is in my grandmother's Sunday School class (and dominoes - or "Chicken Foot" - circle). Gladys is probably 85. Ruby cooks and cleans for Gladys, and she drives her to her physical therapy appointments and runs other errands for her. Did I mention that Ruby is amazing?!

Ruby's birthday was February 11th. Her family celebrated over the weekend with dinners, flowers, balloons, breakfasts, gifts and more. My mother and I wanted to do something special for Ruby to celebrate her birthday. She is such a blessing to my Mam-ma. They visit every day - in person and by phone. Ruby takes Mam-ma with her to the store and to church on Sundays.
In fact, Ruby drives my grandmother a lot of places and does countless things for her every single day. She is a jewel.

While we were having lunch, Ruby told about a "Chicken Foot" party that another friend, Geneva, hosted for all of the ladies on Saturday. Ruby said, "I picked up some of the others and drove them to Geneva's. There were five of us in the car, and I was the only one who didn't have a walker!" We asked what she did with the walkers, and she said, "I folded them up and put them in my trunk!" Did I mention that Ruby is 90?! My mom said "I'm not nearly that old, and it frustrates me to have to worry with just your grandmother's walker! I can't imagine finagling with FOUR of them!"

While we were eating, Ruby said repeatedly that she had enjoyed a wonderful birthday - and an abundance of celebration. She said, "I may never get to have another birthday... you never know... but I hope so." We hope so, too, Ruby... we hope so, too!

Saturday, February 14, 2009

Dealing With Disaster

There seems to be a lot of bad news lately, and whether we realize it or not, our children - and our elders - are watching and listening. While they may not readily express their concerns, it is important to keep an open dialog. If you determine that your children or elders are unduly concerned or preoccupied, reassure them. Here are some examples.

  • News about a recent tornado in a nearby state or city may cause your loved ones to become nervous that impending thunderstorms in your area are going to bring similar devastation.

  • The news of a plane crashing into a home may alarm - and unsettle - your loved ones.
  • The death of a family member or close friend may cause worry. Children may wonder if their own parents or siblings are going to die. Older persons may wonder, "Am I next?"

  • The news of the downturn in the economy may be unsettling. Children may worry that parents will lose their jobs, while older adults may be concerned that they will run out of money.

Last week as I drove my grandmother to her hairdresser's, we passed my church. A stonemason is constructing a new columbarium on the church grounds. Mam-ma asked, "What is that?" I explained, and she said yes, she knew what a columbarium was - and she mentioned a couple of other churches in town that have them. Then she added, "Well, I know that is probably cheaper, but I just don't want to be burned." I assured her that she didn't have to be cremated... and that I would not let that happen. In 1981, my grandparents' house burned to the ground, just a few days before Christmas. They lost virtually everything - the beautiful quilts my grandmother had made over the years... her china and photographs...all of their furniture... pretty well everything except their clothing, the mantel clock, the family Bible and one little photo album. The heat was so intense that it disintegrated a cast-iron, claw-foot bathtub. My grandmother's fear of fire is based on an actual event.

Sometimes an older adult will see siblings having strokes or heart attacks and begin to worry, "Will I be next?" While they may not be able to verbalize this concern, it may manifest in other ways, from subtle changes in diet to withdrawal from activities deemed to be triggers for such an illness. After the loss of their grandmother, a friend's children told her and her husband, "We want you to live to be 200!"

We can't shield our children and older adults from television... and news reports in general. So we must keep the lines of communication open and ascertain what may be running through their minds. We must be ready to reassure them that, while bad things DO happen sometimes, the odds are pretty great that a plane is NOT going to hit your house, and tsunamis in North America are unlikely. Discuss ways to combat the negative thoughts...

  • For adults, you might suggest they make a list of things that concern them, and then list the odds of those things happening. Another good question to ask is, "What is the WORST that can happen... and what are the odds that it will?" Putting things in perspective... and making a plan to deal with them... can be very helpful.
  • For children, talk about "when you heard about the tornado, how did that make you feel?" Then discuss ways to keep your family safe... i.e. developing a "safe room" and/or a preparedness kit. Talk about ways you can help victims of disaster - sending money to the Red Cross, donating to a food bank, finding websites where you can post a note of encouragement. Discuss illness and ways to stay healthy - good eating habits, an exercise plan. Talk about loved ones who have become sick or even died and let the child vent his/her feelings - ask any questions - and simply share their heart without reproach. Offer encouragement that is age appropriate. Encourage drawings and play that allows the child to express his/her feelings. My friend's daughter wrote a song about her grandmother that expressed her sadness.

Sometimes our children and our elders behave in a way that can be mind boggling - and out of character, and we scratch our heads and wonder, "Where did THAT come from?" Just maybe this is the result of some current event - either in the daily news, or in their immediate world. Playing detective and determining the cause of the concern - and then addressing it - can go a long ways toward improving everybody's mood.

Wednesday, February 11, 2009

Share Your Story!

One day last week, I visited with two friends who were struggling with the balancing act of caring for their immediate family - husband, children, and running a business - and meeting the needs and demands of their parents. One of the women said, "I don't want my son's life or my parents' life - I need my OWN life!" I was reminded of my maternal grandmother, who screamed at my mom one day, "I don't want you to be my mother!" Believe me, Mom didn't want to be, either!

My other friend told the all too familiar tale of her dad calling and saying, "You have got to come help me with your mother - she is driving me nuts!" My friend told her dad that she was in the middle of something (i.e. WORKING) - could it wait awhile? Again, I was reminded of my grandmother phoning my mother one afternoon, and when she couldn't reach her, she phoned Mom's next-door neighbor. Mom was walking home after a day of teaching kindergarten, and she had not quite made it to her house. The neighbor flagged her down on the street to tell her, "Your mother is on the phone and needs to speak with you!" Apparently it could NOT wait!

If you have not read my mom's book, "When Heads and Hearts Collide," I highly recommend you do so. I have yet to meet a single person who read it who did not identify personally with the stories she shares. You can order the book at - just click on the tab for "Books by Arline." I encourage you to get this book and read it, then let me know how it impacted you... and we will share your thoughts here.

I know many of you are struggling to have a life and "keep all the balls in the air." My mother used to ask, "When will it be MY turn?" I am not sure we all get a "turn," but I do believe there is safety in numbers - and great comfort in hearing the stories of others. So please, share YOUR story with me and other readers of this blog. Either contact me, and I will post it for you - or add your comments here.

I listened to my two friends as they shared their own experiences. Probably my best piece of advice for them was something given me a few years ago by my pastor... "No!" is a complete sentence! I have clung to that thought, and it has served me well. I try to be discreet and discerning in my use of this... but there are times when I simply must say "No!" - to my grandmother, to requests for my time at church and elsewhere, to myself when I start to pile more upon myself than I possibly manage... and sometimes, to a social situation for which I simply do not have the energy. Remember, there is only one YOU... and if others are depending on you in times of real need, you will need to conserve your energy - and your sanity - for when it really counts!

Order the book - send your stories - and hang in there!