What Home Caregivers Can Do For You

F I DON’T DO IT, WHO WILL? TRANSITIONING FROM DAUGHTER TO CAREGIVER

(Donna Webb, The Bear Hug Waltz)

At 93 years old, mom is fragile and strong, smart and sometimes ‘fuzzy’.  She has a great sense of humor and a twinkle in her blue eyes.  If she gets mad, she could give you such a whop, if she wanted to …which she doesn’t.

We had been looking after mom for quite a few years.  Living next door made that pretty easy.  Each year we have had to take on more and more of her responsibilities, laundry, shopping, paying bills and eventually food preparation.

She continued doing some simple cooking, fixed microwave meals and of course had to have a dish of frozen yogurt before bed!  That was her daily ‘fix’!  I started having meals on wheels delivered to her when the cooking became something that she really should not be doing any longer.  It was becoming dangerous for her.  The meal that came she could just pop in the microwave, she could handle that ok….. for awhile.

She was still able to toilet herself.  She had a port-a-potty in her bedroom to use, or when she was in the front room she could use the regular bathroom.

But bathing was being eliminated more and more, so I needed to step in and assist with that, as well as doing her hair and nails.  No problem, as I said, we just lived next door.  You do what you need to do.

On November17, 2005, our home burned, we moved in with mom that day.

So, now what?

Thank God we had a place to go.  We slept in the front room on the hide-a-bed.  Since we were living here now, we could tend to mom much more effectively.  She was still able to look after herself during the day while we were at work.  But that would soon be coming to a halt.

Mom had been living alone for many years and as a result had established very bad habits and routines, or I should say lack of routines.  As she got older her once very routine day turned into a do whatever, whenever or not at all day!  That included sleeping, eating, bathing and so on.  She would get up at all hours of the night, sometimes getting dressed and having breakfast at midnight!  Well, needless to say we lost a lot of sleep for awhile until we could get her into a good routine, for all of our sakes!  I got her on a schedule of when to get up, eat, take a nap and go to bed.  She still will frequently rebel against the schedule or routine, “I will go to bed when I want to!”  Having a routine was absolutely necessary for our sanity and even though she doesn’t realize it, so very beneficial for her.

Now we make sure she gets a good breakfast, at breakfast time!  She gets her correct meds when she should have them, and make sure she drinks enough liquids, which she always fell short of her whole life.  Water consumption is critical for everyone, but certainly for the elderly.  She usually takes 2 to 3 hours to eat her breakfast so most of the time she doesn’t eat lunch, maybe just a light one.  Then I fix the three of us supper, which is often a challenge.  Getting accustomed to her kitchen took me awhile.  I lost my creative cooking ability for awhile, but of course, I still had to cook.  Cooking for mom has been the real challenge as she cannot chew many foods, she can’t smell or taste either.

So, I have the task everyday to find and prepare foods that she can eat, that are colorful, have the right texture, good for her, and then make up weekly menus using those foods.  It has been a chore.

Since I was living here, it was easier to help mom with her personal care needs, like bathing.  I’d run the water, put her special seat in the tub for her, and whatever assistance she might need.  Then I would let her get herself washed up, dried off and dressed for bed.  One particular bath night, I had to wake up to the realization that she could not take baths this way anymore.  It was getting difficult for her, and she was washing maybe two body parts!  So, the next bath night, I had her sit on the end of the seat and do a sponge bath using the sink.  I was still trying to allow her some independence and privacy.  Truth is, if water never touched her body again, she would be just fine with that!  It was all to much work for her.

The reality of it all was, I was postponing or ignoring the inevitable fact….I needed to giver her her baths, start to finish.  I had been doing her hair at the kitchen sink, that worked ok, but it to would have to change.  But this bath thing, I knew she was barely washing at all, but what do I do?  I knew what I had to do, I just had a hard time coming to grips with it…moving into the full time role of caregiver.  If I don’t do it, who will?

Realizing and acknowledging was the first step in removing my “daughter’s coat” and putting on my “caregiver’s coat”.  When I finally made the decision to take over mom’s bath time completely, the coat was on all the way.  It is a mental shifting of gears, a pocketing of emotions that only those who have had to do it can understand.  It is likened to a death and burial.  A changing of the guard.  The daughter is now the nurse…dietician…rule maker…comforter…prison guard or warden...companion…all-around caregiver…mom’s mom.

Where did the daughter go to?  Well, she is beginning to find herself again.  It has taken almost a year, but it is happening little by little.  Being able to share with others helps me to be somebody, to have an identity.  My world became very isolated and lonely.  That too is changing.

On Easter of 2006, mom fell and broke her ankle.  That same week she passed out from a TIA.  That’s a little clot that makes a nuisance of itself then disappears – my medical terminology.  Thus bringing more trials to a already difficult situation.

Going from the broken ankle to the passing out, mom spent several days in the hospital going through a battery of tests, all which showed nothing.  They gave her different meds to thin her blood and slow her heart rate down, and also changed her blood pressure meds.  All of which put her in a stupor like I have never seen before.  I actually thought she was dying.  Being in a strange place, not having someone around her all the time, not being handled in a way that made her feel secure, combined with the effects of the meds, I really thought I was losing her.

The day I was to bring her home, I took charge, got her dressed gave her instructions as to how to move and gave her the security that she had not gotten while there.  She responded so well with understanding and strength, I was just a hollering!  I had my mom back!  I couldn’t wait to get her home and give her the care I knew she needed.

So, we learned how to function in a cast from her knee down.  The first time I moved her, I thought she had gained 50 pounds!  But I quickly got used to the added weight. She coped very well with it.  When she was in bed she would just flip that leg back and forth like nothing… there was no pain that’s why.

See, it had actually been over two weeks before they actually discovered her ankle was broken!   That was after being in the emergency room, having x-rays and so forth!  A therapist had come to work with mom and she was concerned that mom’s foot still hurt so much.  She really felt there was a fracture.  She got after one of the Drs., and we got an appointment for her.  New Drs., and new x-rays, and the fracture was found!  So, mom was going through all those days in pain, we were told it was a sprain!  When she stayed in the hospital, they only wrapped her foot in an ace bandage, and never once x-rayed it in the five days she was there!

She was in a cast for about a month, and then a month of getting used to putting her weight on her foot and ankle.  At the end of that month I stood her up and asked her to put some weight on her foot, asked her how it felt.  She said it felt like she wanted to walk!  I said let’s go out to the front room!  She walked through the whole house, as strong as can be!  I told her she was off and running.  She said, well I’m off, but I’m not running anywhere!

There is no summing up of this chapter or others to follow.  It is a job that continues 36 hours a day, day after day, month after month, however long you must wear that coat.  If it wasn’t for my husband, I couldn’t even do this, he is the only helper I have.  We do have “mommie” sitters that we hire from time to time so we can actually go somewhere together!  It is his love and commitment to my mom that allows him to put on his “caregiver’s coat” when he is needed.

CAREGIVING FOR A PARENT OR ELDERLY PERSON

(caregiver.com)

By Patricia St. Clair

Throughout our lives we are usually identified by our roles as son, daughter, brother, sister or parent. As our parents age, however, roles often reverse or take on new meanings. Because today's baby-boomers increasingly find themselves assuming the role of "caregiver," they begin to feel the necessity to become proactive in the care of one or both parents. Issues surface that have remained buried. Parents often find themselves battling their adult children for authority in decision-making. Adults with elderly parents need to educate themselves, not only with written information but also with personal knowledge of their parents' habits and problems. Timing is everything, and that old adage  certainly applies to assisting a parent make the transition from independent to needy or problematic. Open communication with elderly parents is the optimum situation but one that is not an option in many families. Short of this, adults with elderly parents need to realize that they will always be the "child" in the eyes of their parents. Baby boomers not only respect authority but are much more health-conscious than those over 65 who feel surprise at their still-existence on earth. Elderly parents may never openly admit a problem or ask for help, but the educated, alert offspring can easily pick up subtle clues. Visiting parents presents an opportunity to notice changes in habits. Slowness in dressing, eating and walking are obvious changes. A prolonged delay in opening mail or driving a familiar route should be considered a cry for help. A brief review of the medicine cabinet can also provide offspring with important medical knowledge as to what medicine is being prescribed, not necessarily taken, by their parent. This is by far one of the most common problems children face when dealing with parents who are just beginning to fail. While a parent may give up the fight in going to a physician, and while the same parent may follow through in getting a prescription filled, it is quite common for the untouched bottle to remain in a medicine cabinet or nightstand drawer. Breaking down and taking the medicine would be admitting to themselves that a problem exists, and this is simply not an option to many elders. Therefore, adult children should be keenly aware of the types of medicines prescribed and familiarize themselves with the medical problems to which the medicines are correlated. Rather than involve the court system or attorneys as elders begin to fail, adults need to reach out to siblings, relatives, church friends and volunteer services. Many siblings today live hundreds of miles apart, and in many cases also lived far distances from their parents. Family members, all of them, need to become proactive in the management of their parents' healthcare. The familiarization with prescribed medicine is the first important step, and if the elder refuses to discuss their medical problems, offspring should establish a relationship with their parents' physician. The medical community often welcomes this show of caring; however, others dissuade the intrusion. Family members should never withdraw when the first door slams in their face, but should persist until finding a method to establish some sort of common ground with their parents' healthcare provider. The alert, knowledgeable offspring will also be more prepared to deal with deeper issues as the patient's condition worsens. Nursing homes and home healthcare, in combination with finances can become a full-time concern. Parents are often reluctant to discuss both their medical condition and financial situation with adult children, but when health deteriorates to the degree that outside help is necessary, it is vital for the primary caregiver to be aware of both. Most importantly, children should be aware of their parents' insurance and exactly what it covers. Financial awareness is crucial here, for few elders are totally covered by any insurance plan. When nursing homes appear to be the only alternative to independent living, children often begin to question the feasibility of having a parent move in with them. Ironically, government aide is available to eldercare housing facilities but not to adults who care give to parents within their homes. The financial burden to children is often the deciding factor in the decision made regarding the elder's future home. Again, the more knowledgeable the offspring is regarding insurance and costs of facilities (including transportation, medicine and meals) vs. cost of moving a parent into the child's home, the easier a reasonable decision can be made. On a personal note, my mother passed away in April 1999, after a yearlong illness. Before she lost the capacity to communicate, she struggled to clarify all legal matters to me, her only child. Utmost on her mind were specifications regarding stocks, bonds and bank accounts. This one act on her part enabled me to be proactive not just in her medical needs but her overall financial needs as well. Every family is different, as are the needs for every caregiver. However, money seems to be one of the more basic concerns for all parties involved. Regardless of whether Mom is to be placed in a Nursing Home or move in with offspring hundreds of miles away, money often becomes the deciding factor upon which life-altering decisions are made. Insurance companies need to be contacted to find out what coverages policies provide. Financial information is crucial in assisting adult offspring in making decisions regarding the parent's healthcare. A second controversial issue between elders and their offspring is independence, or the lack thereof. Mom has driven to the grocery, drug store and all points in between all of her adult life, only to be told now that she no longer possesses the ability or good judgment to drive. In the best of circumstances this is stressful, but to those whose parents have truly lost the ability to make wise decisions behind the wheel of a car, it can be devastating. Now the subject of transportation becomes a major issue. Who is to take off work to transport Mom (or Dad) to the doctor? Chances are, Mom or Dad will disagree with their limitations, thus setting the stage for further confrontations. Battles never "solve" confrontations; they merely deepen the resentment already felt among all parties involved. The loss of driving ability, the relocation of a parent, and the need for questions involving financial matters all are underlying courses of the biggest fear an elder has. This is the fear of losing independence. Although offspring caregivers must deal with numerous situations as they arise, the elder fears losing their "rights" more than the sum of all the other parts. There's a juggling of guilt vs. need for the elder. It is a battle that is never quite won. We as caregivers need to be fully aware of that battle raging inside the elder while we cope with the daily tasks of caregiving. Any adult child with the potential of caregiving should make it a priority to watch for signs in aging family members for the onset of illness or failure. Awareness can provide a caregiver with the advantage he/she needs to plan, take necessary steps, consult with health care professionals and be prepared for what may lay ahead. Refusing to face the inevitable cripples the caregiver, and ultimately the elder, as the caregiver has chosen to remain ignorant of choices that can and should be made. Thousands of articles, hundreds of books and numerous movies have been based on the subject of caring for the elderly. What has not been emphasized to the full extent is the subject of what the elder experiences as his or her world collapses, health deteriorates and independence disappears. Those of us who are adult children and are or have cared for an elder have no doubt witnessed firsthand the effects that the loss of independence have had on our loved ones. We take for granted so many of life's "little things.” Last minute additions for dinner only require a short drive to the corner market. The batteries for the TV's remote control have gone out and we have to manually get up to change channels. The phone rings and you remember the cordless phone is still on the charger instead of perched by your easy chair, which makes you have to disengage yourself from the cushions if you want to talk to the caller. These examples are common in our daily lives and are easily rectified, although most of us would classify them as impositions. Now realize what an elder who is barely mobile or perhaps already bedridden would go through in similar circumstances. In the first place, she wouldn't be fixing dinner and would only hope that a loved one would be preparing it for her. To her, that would be the imposition, having to cause further work for someone she loved. Secondly, if her remote's batteries ran out, chances are she would have to wait until a loved one remedied the problem or merely shut the television off. There again, to the elder the imposition would be in having to rely on her caregiver for help instead of being able to handle it herself. And the phone ringing? Elders who are farther in their journey down the final path of life rarely want to talk on a phone, much less struggle to reach for it or find it amid their sheets or blankets. We all want to believe our parents will live forever. We often don't see them as men or women. They are simply Mom and Dad. When we are faced with role reversals and find ourselves making the decisions and often saying "no" to the people who always made the rules for us, it effects all of us in different ways. There are no rules for this game, and no "rights" or "wrongs.” There are merely guidelines from which we can take advise from those who have dealt with these issues before us and hope we do all within our power to make our elder's last years, months, and days on earth peaceful, comfortable and loving. We must go with our inner feelings much of the time as to what would be right or wrong for our loved one, and as our elder sees how difficult the attempts are on our part, he or she often is willing to compromise on situations that could have caused major rifts within the family. The issues with which we must deal are numerous and diversified, but the more open those involved can be with each other and the better communication they can achieve, the more successful they will be in working toward the end in harmony and peace.