Taking Care of Business Every Day

If you are a Baby Boomer and are lucky enough to still have living parents, chances are their health and welfare is becoming more and more your responsibility. I am a 62-year-old only child of a mother who will be 91 a less than a week and I live 150 miles from her.  Hopefully within the next year my husband, daughter and I will be moving nearer, but in the meantime we are dealing with the issues that come up with having a parent age.  From this distance it’s a little like juggling cats against the backdrop of working as Special Education Para educator, having an adult child with Special , and having a husband living and working 1,500 miles away for the last year and a half.  I have what is known as a "commuter marriage."  Every day requires the planning of a general.  Fortunately I have some officers in the form of a son and daughter-in-law who live with us and another son and daughter-in-law twenty minutes away.  Many family caregivers are not so fortunate.

So far my mother has remained relatively independent, living alone in her own subsidized apartment with a minimum of help.  She does not desire to go into an assisted living arrangement and we are doing whatever we can to keep her where she is for as long as possible.  “Other people die in this building.  Why can’t I,” she has asked.  Keeping track of her deductible expenses to keep her qualified for her low rent has fallen to me as well as bill paying, although we've managed to make most of that automatic.

In 1985 my mother had a serious bout of cellulitis fueled by MRSA.  To this day we don’t know how she contracted it, but it rears its ugly head from time to time and I have to be prepared to get her seen by a doctor when it happens and monitor her recovery.  If the doctor doesn’t order home health and a visiting nurse, I ask.  My mother is not a good reporter and will sugar coat things on the phone so I want trained eyes to see her blisters and whether or not they are getting better.  That’s the fun we’ve been having right now—organizing a visiting nurse.

The health is a big issue and in addition to home health I pay for a medic alert device and it’s been worth every penny.  After doing some research on the Internet I chose Get Help Now because they didn’t require a long term contract.  With an elderly person you could sign up for three years and be stuck with a couple of years contract when they pass.  We are on a six month contract which seems far more reasonable.

When my mother began to take multiple medications at first I counted pills.  This was nerve wracking especially when she attempted to do it and I found mistakes that either of us had made.  Then I discovered that for very little extra the pharmacy will blister pack her medications.  She gets two cards each month, one for the morning and one for the evening.  That was a good sized stone lifted off of me!

Some things as small and yet as huge as garbage can be daunting.  My mother, with some effort, can get her garbage out of the kitchen can and on a good day onto her walker to take down in the apartment building elevator, but lifting the lid of the big green dumpster is a no-go.  It’s not all that easy for me!  She asked a neighbor if we could pay her to take out the garbage and so for a pittance she puts the bag in the hall and it disappears.  The neighbor needs the money and my mother definitely needs the help.  Without this arrangement Mother could not remain in her own place.

Laundry is another problem.  My mother has toppled over in the laundry room.  Through a local agency that assists the old and infirm we hire someone to spend 1.5 hrs. per week at my mom’s, mostly doing laundry.  If need by we’ve stretched her fixed income to cover 2 hrs. but it is a stretch.  This week the chore person is taking my mother to the doctor so the laundry will be waiting for me when I make my bi-weekly run to the coast to shop and do whatever else she needs.  I don’t mind.  I’m glad that my mother doesn’t have to take dial-a-ride to the doctor because sometimes she has to wait as long as an hour to get a ride home which is tiring.

With both my mother and my daughter letting them make decisions is crucial so that they maintain a sense of autonomy.  In other words I pick my battles to build political capital for times when I have to insist. “Are you going to have a shower this morning or wait until tonight?” vs. “No, is not an option.”  In my job I have seen what not letting an individual feel that they have any control over their life can do.  You end up with behaviors you don’t want and contention that makes life unpleasant for everyone concerned.  It’s all part of my juggling act.  I will be so grateful when my husband’s time away from home is done and I have him as a helpmate.  Both my mother and daughter react differently to him which makes me laugh, but whatever gets the job done.

Recently my husband’s parents became in need of 24 hour care.  Instead of seeing his parents go into an institution or adult family home, which they most definitely did not want, one of my brothers-in-law and his wife stepped up to the plate and left their lives on hold to care for my in-laws.  Their care has been nothing short of extraordinary.  They kept them first in the parents’ own apartment and then took them into their own home where they could be assisted by their own adult son.  With a dying mother and a father suffering from short term memory loss they have had their hands full, but they have cared for them with patience and love they would not receive from strangers in an institution.  I stand in awe of them and wonder if I could do the same.

Many nights I lose sleep wondering about those I love.  Tonight I will sleep well as my mother has organized her own ride to the doctor tomorrow to get wound care.

The Continuing Struggle to Parent a Parent

I am grateful that our experience with a Manor Care facility was so different from that which our North Carolina neighbor is experiencing. When my mother was getting ready to be transferred from Ocean Beach Hospital (where I was unhappy with her care) to Manor Care, Gig Harbor, the nurses emphasized the importance of my going to the facility on a regular basis which is one of the reasons we chose Manor Care in the first place. It was closer to us. Her ambulance ride the 150 miles from Ocean Beach hospital to Manor Care in Gig Harbor ended up being more than $2,000, but would have been worth every penny even if Medicare and insurance had not largely paid for it.

As an only child I don’t have siblings to help shoulder the responsibilities of my aging mother and can feel helpless at times witness our current weather situation and the fact that my mother fell twice on Saturday. My husband has enough brothers that they have committees! If you have an aging parent who doesn’t live nearby getting support for both of you is extremely important. I have had to ask questions and mine out the little services that make my mother’s life and therefore my life easier.

If you live at long distance with a parent in a care facility it is best if there is a sibling or cousin who can look in on your parent on a regular basis. Patients with family, or friends acting as family, who pay attention to the care they are receiving get better care no matter how good or bad the facility is. I was at Manor Care everyday, sometimes oftener, and my kids visited, too. I took my mother’s laundry home to wash so things would not go missing. This level of attention was exhausting when tacked onto what I do each day as a working mother of an adult daughter with special needs, but it was worth it since it was only for six weeks and not forever. That level of attention would have been difficult to maintain long term and would have required me leaning more heavily on my children. Lastly, if you have concerns about the care a loved one is receiving; contact the facility’s social worker. We found the folks in that office at Manor Care to be extremely helpful in creating a plan to get my mother ready to return to her normal life. A phone call is clearly not the same thing as being on scene, but it will demonstrate that someone is paying attention to how things are going for the patient.

I felt that the staff at Manor Care, Gig Harbor was wonderful. I met no one who did not seem concerned and committed to helping my mother be able to return to living as independently as possible since she’s resistant to assisted living at this time. As a Special Education educator and parent I know the importance of least restrictive environment, but I also know how difficult it is to look after a parent from far away. We are constantly finding bumps in the road that have to be dealt with. Just this weekend my mother fell twice in one day. We are in the midst of a snow storm here in the NW and it is impossible for me to get there or I would have already brought her here for Christmas. Fortunately, in the Spring I got her a Senior Security System and it has been invaluable as she’s gone through two serious infections that she had not reported to anyone until too sick to walk properly and a few simple falls from which she could not get up.

Before I committed to Senior Security I did a little investigating on the Internet. We’ve all seen the Life Alert commercials (“I’ve fallen and can’t get up.”) on television, but I read some poor reviews of that company and warnings to find one that would not lock you into a long term contract. Although we hope our loved one will need the service for years and years the fact is that if you’re looking for a medical security system it is possible that you will lose that family member and don’t want to be left paying on a contract for a system no longer needed.

When my mother returned to her apartment from her hospitalization in June she came with more medications than she was accustomed to taking. She also seemed a little more frail and confused as a result of the staph infection she’d survived. Because it was summer and I was off from work and staying at our nearby summer home I was able to dole out her medications and get her back on her feet. I knew that if she were to stay in her own apartment that we needed a way for her to take medications without getting confused so I purchased enough pill strips to fill and do her between my visits which generally speaking are every two weeks during the school year.

In September my mother felt fit enough and competent enough to fill her own pill strips and was very proud of this accomplishment. This points out how difficult it is for people to lose control over their lives. This small achievement made her so happy and pleased me because I believed it to be proof that she was returning to her old self. Shortly after this my mother developed a serious urinary infection which resulted in a high temperature and confusion. Fortunately, because I have a cousin nearby whom Senior Security contacted when I could not be reached at school, who went over and realized that my mother’s falling was something more than clumsiness. We got her to consent to going to the hospital where she spent another week and then needed the rehabilitation at Manor Care.

When my mother’s rehabilitation at Manor Care was over and I returned her to her apartment in Ilwaco I discovered that the medications in her pill strips were not correct. Bump in the road. She had not achieved all that she thought. Knowing that my visits are sometimes less regular during the Winter due to storms and ice, I became concerned about her taking medications. That is when I learned that the pharmacy in her community will blister pack medications for the elderly for a mere $4 per month! I felt a huge weight lift off my shoulders and I realized that neither my mother nor I would have to be responsible for making sure she took the correct dosage.

Equipment for the elderly has been another bump in the road to independence. I am still learning what is and what is not paid for by Medicare. My mother came home from Manor Care with a lovely walker, much better than one a neighbor had given her and paid for by Medicare, but they don’t pay for shower chairs. The social worker at Manor Care had suggested checking Goodwill before spending large amounts of money at Costco or a pharmacy. I’ve found Goodwill to be a wonderful resource for such equipment. In addition there are organizations that recycle equipment at no cost in some communities. If you have a senior assistance center (another invaluable resource for learning about prescription insurance) in your parent’s community contact them. They will know who does that sort of thing as well as where to get home-health services and a assistance in getting around the community. My most important piece of equipment in caring for my mother is my cell phone. Being able to call her at least once a day is my best way of keeping on top of what is happening with her.

Lastly, to paraphrase Blanche DuBois in Street Car Named Desire, ask for the help of strangers. It is not in my nature to ask for help, but my concern for my mother has crumbled my pride and opened me to blessings I could not have imagined. I still rely largely on myself, but have discovered that the corner grocer will take my mother groceries when the roads are too bad for her to go out or me to get to her. There is an organization in my mother’s community who will shop for her or take her shopping, but if you don’t qualify for Medicaid (which thanks to eight years of poor social services my mother does not) you have to pay $19 per hour, more than my mother can afford on a regular basis. Be creative. Ask questions. If you’re at a long distance contact a senior center or senior assistance office in your parent’s community.

There are still things I don't understand such as why I can receive Care Provider money to care for my special needs child, but my friend in Oregon cannot get the same thing for caring for her father and cannot find a competent provider. The struggle continues on a daily basis.