For instance, when he visited me, he often brought a travel mug of coffee with him. As he continued drinking it throughout the morning, I asked him if he wouldn’t want some hot, fresh coffee. “No”, he replied “I’m used to drinking cold coffee” – this from a man of Swedish/Canadian decent, who always loved good coffee. As I questioned him further, I found that he didn’t know how to use the coffee maker and so only drank coffee if there happened to be some in the pot. Since he was living with my sister at that time, I assumed that she must have had some fancy espresso machine or something similar. I was wrong.

Another clue should have been his weight loss. He chalked it up to the stress of living with my sister and her four kids. In reality, he didn’t know how to prepare meals for himself when she was unavailable and so just didn’t eat.

When considering whether or not your loved-one needs extra help, look carefully at some of the following signs.

Are his or her clothes clean and well-kept. Has he forgotten to add a belt; has she forgotten to change out of her slippers and passes it off as “being comfortable” or is he or she wearing the same outfit over and over again?

Does your parent or loved one show signs of deteriorating hygiene such as body odor, bad breath, unkempt hair?

Is his/her home as tidy as it should be? Of course, as seniors age, their surroundings won’t be as neat as they once were, but they should still be clean. One woman I know was surprised to find tiny cockroaches scurrying to the corners when she opened her mother’s pantry. Her mother had formerly been what she called a “neat freak”. Changes in behavior are what matter most.

Speaking of pantrys, check the cupboards to see if there is a good supply of nutritional food items. You might also check the trash to see if any of them are being used. Look in the refrigerator and note the expiration dates on perishable food items. I once found a package of cold cuts that had expired 2 months previous.

Are the bills being paid? This is often difficult to assess because parents rarely wish to discuss their finances and it may require some detective work. One clue: if there are stacks of unopened envelopes on the desk, especially ones marked “overdue” or that have red outlines, this might be a concern. If available, glance through the checkbook.

Is your parent becoming socially isolated? Has he/she been attending church less frequently, avoiding social situations with excuses of fatigue or “other plans”? You parent may be fearful of driving or even fearful of being in a uncomfortable situation. Early dementia patients are especially prone to fears of socialization. Does she seem sad, anxious, confused ?

Are medications being taken correctly? This, too, is difficult to ascertain without some effort. Encourage the use of a compartmentalized medication container and then check to see if they are being taken each day at the correct times. I had thought my father had a good handle on his meds because he could tell me the name of each pill and what it was for but when I looked carefully, the medications were not always correctly placed and on some days, the medications were not taken at all!

Is there evidence of your parent falling prey to a phone or mail scam? My friend, Mindy, upon noticing her mother had numerous silver (colored) chains with crosses on them, commented to her mother on them. “O, they keep sending me those and I send them money, and they send more. Isn’t that nice??” My own father bought a roll of “un circulated, soon-to-be-retired” nickels for $250.00. They were not what they were advertised to be. (And he did this WHILE living with me on a day that I was working.)

Lastly, are there bruises on his/her body? Some medications, like Coumadin or other blood thinners can cause some bruising, but bruising can also be a sign of falls. Elders will often make excuses such as “O, I was working in the garden” and not admit to the falls.

It’s estimated that more than ten million senior citizens require some level of help in their daily living, ranging from simple chores to more complex caretaking.  Always be aware that while it may be time for your aging parent or loved one to receive some type of help, they will probably be too embarrassed to ask for it.  It’s up to us as loving children to begin to discuss and determine what those needs are.

My lawyer was scheduled to attend this court hearing with me and I was also surprised (although I shouldn’t have been) that my father’s lawyer also attended the proceedings.  While I have absolutely nothing against my father’s lawyer (she’s a lovely person and all elders should have their own representation in cases of guardianship and conservatorship), thoughts of  ”I wonder how much additional money this will cost my father’s estate” rang in my head.

You see, once upon a time, families were able to make decisions for their elders without requiring legal representation and all the hoopla and expense that goes with it.  But now, because of privacy laws and because of people taking advantage of our elders, durable powers of attorney for both health and financial affairs, guardianships and conservatorships are becoming more necessary.

My father’s conservatorship became necessary after his dementia increased and  he agreed to sell his lakeside home in Canada for $100,000.oo less than market value.  If you’ve followed this blog for any length of time, you may also remember that he bought a truck while I was at work and had it delivered and later that month called 911 because of concerns over the NASA astronauts in space.  But this conservatorship has cost his estate a few thousand dollars .  Even after his death, there remain legal expenses.

But I think what is really concerning me now is my mother.  As I wrote recently, she is having trouble receiving her social security payments since she has moved to Canada.  At first they told her, it was because they didn’t have her new banking information.  Just yesterday they told her that she doesn’t qualify because she moved out of the country!  I don’t believe that because both she and my father contributed to the social security system in the United States for over 40 years.  But…………..can I talk to them about it?  Nooooooooooooo.  Privacy laws will not allow it.  Please see my post on HIIPA laws  to read more about this.

So now some sort of power of attorney will be necessary  for one of my sisters or myself to help my mother figure this whole mess out.  Meanwhile, she receives no social security payments.  How much will THIS cost?  How much time will it take?  Because of my experiences with my father, I know the proper paperwork to file, but how many families do not?  How many families cannot afford to add yet another cost to their caregiving budget.

Even my own attorney said that this inability to help aging parents without legal paperwork is a waste of time, energy and money for all concerned. 

Something must change!

Look for a family practitioner or general practice physician to be the primary care physician for your loved one. General and family practitioners are trained to treat all aspects of a person’s health and well-being even though they have not specialized in a specific field. They treat the elderly as well as newborns, children and adults for everything from a splinter to a more serious illness.

Health Insurance Coverage

Choosing a doctor can be based upon several factors. One of the first aspects to look at is whether or not the patient’s health coverage is accepted by the physician being considered.  Most physicians will accept Medicare but it’s important to determine whether or not they will accept Medicaid and/or the supplemental policy if one is available.  If the doctor will accept the health coverage, the next thing to look at is accessibility.

Location and Accessibility

It is important to choose a doctor whose office is located close enough to be easily accessed for routine care and emergencies. If the elderly loved one is homebound, a physician who understands this and is willing to work around this detail to provide care is ideal.

Physicians can order home health nurses to draw blood, administer injections, take vitals signs and other basic medical procedures then report to the doctor. These procedures would normally be done at the doctor’s office, but when dealing with a homebound patient, getting them into the office may be a problem.

In addition, when transporting an elderly homebound loved one, distance to the doctor’s office can play a part in the convenience of the location. Determine if the time spent driving and the distance to and from a doctor’s office makes the doctor in question an acceptable choice for your loved one’s needs. If the doctor requires that your loved one must been seen at the office frequently, then distance can be an important factor when choosing the physician.

Office Hours

When choosing a doctor there are a few important questions about the doctor’s schedule that you should ask. What kind of office hours does the doctor hold? Do they have evening or weekend hours? How can you get in touch with them when the office is closed? Are the physicians who cover the “on-call” hours acceptible to you?

Hospital Choices

Most doctors have privileges at specific hospitals. When choosing a doctor, it is important to find out which hospital or hospitals the doctor has privileges at. This is the same hospital the patient would go to for emergency care, tests and surgeries in most cases. The size, location and reputation of the hospital may play a large role in your decision to choose or not choose a specific doctor.  Some towns and cities have specialty hospitals for certain conditions.  If your loved one has a condition that is treated by one of these specialty hospitals, it is important to determine if the primary physician has priviledges there.

Personality

Even the most qualified and credentialed doctor may not be the best choice for your loved one’s personal physician if their personality clashes with yours. You’ll probably want to choose a doctor that you genuinely like and feel comfortable with. Remember that you will need to be working closely with this person to advocate for the best health care for your loved one.  Imagine my surprise when I asked my father’s physician if he might be discharged in the afternoon only to hear him say “What part of HE WILL BE DISCHARGED TOMORROW MORNING did you not understand?”  However, there are also surgeons that I have worked with in the past who had terrible bed-side manners yet they are the ones with whom I would have trusted my life.

Choose a doctor who will take the time to speak with you as you advocate for your loved one’s health care. The doctor should be willing to listen to your concerns and answer your questions to your satisfaction. Remember, you are hiring them and paying them for their time.  The days of the primadonna physician OUGHT to be over.

Another consideration is the physician’s staff.

Do you like the physician’s staff? Are the doctor’s employees personable, respectful and pleasant? If you find receptionists, nurses and other staff members to be rude, then perhaps you should consider other physicians. These are the people you will be working with to schedule appointments, update prescriptions and access patient information. If you find them difficult to work with initially, it might improve over time but don’t expect it to automatically occur.

Ask the doctor if they have a Family Nurse Practitioner or a Physician’s Assistant in practice with them. These medical professionals assist doctors in caring for patients in many private practices. Decide if this is acceptable to you for your loved one’s care. If not, then you may need to continue looking or specify in the patient records that care must be provided by the doctor.  Keep in mind though that Nurse Practitioners and Physician’s Assistants generally have more time to spend with the patient and are trained to be patient advocates.  They are also often more accessible.

Making the Choice

After taking all of these factors into consideration, decide which physician you would like to care for your loved one. Schedule a new patient appointment and commit to making the new relationship work.

It wasn’t until I began looking at them as a means of respite care placement for my father that I learned of their costs.  In my father’s case, the daily respite cost was $220 but the monthly cost would have been over $5000.00 for a semi-private room.  This rate did not include medications or transportation to medical appointments. (Rates seem to vary between $4000.00 and $7500.00 per month depending upon the residence.)   None of these facilities accepted Medi-Care and private insurances don’t cover such things.  A couple of them stated that if a person were 2 guarantee private payment for 3 years, then they would not “evict” the resident once their money was gone.  At that time, they would then accept Medicaid reimbursement. 

Recently I have read several articles about assisted living facilities being available mostly in areas of higher income.  In areas of lower income, rural areas and in areas where minorities live (and all 3 of these are equivalent to areas of lower mean income), there are less available assisted living facilities.

In a study at Brown University, a conclusion was made that hispanics would be more likely to use nursing homes than assisted living facilities because they at more likely to be at the lower end of the socio economic scale and did not have the money.  Because of lack of money, they were more likely to be placed in nursing homes with less than desirable facilities, receiving less than adequate care which sent them back to the hospital and began a downward spiral.

I think that another reason that there are fewer assisted living facilities in areas where hispanics live is that their culture has the tradition of elder care being handled by the adult children of the family in a home setting.  My best friend’s mother took care of both her mother and aunt in her home until she was physically unable to do so anymore.

Assisted living facilities vary tremendously; they can contain a myriad of amenities and consist of private apartments with a nurse on duty 24 hours a day or at the other end of the spectrum, they can be closer to a nursing home environment with semi-private areas that consist of 2 beds in a room with a television set.

Assisted living homes are not the right choice for everyone.  Unless a facility has a special unit  (and many are opting to include these), dementia patients should not be placed there.  Sometimes patients have medical conditions that are too complicated for this type of living arrangement, as well.

Nursing homes don’t have much variation.  In MY words, they are simply sad places where lonely people live out their final days. 

In between, there are skilled nursing facilities, but in most instances, these are temporary placements until the “patient” can either be returned home or to a more permanent placement in a different facility.

I’m concerned about what will happen when the aging population runs out of money to pay for these expensive assisted living homes.  At between $ 50,000 and $90,000 per year, who will be able to live there long?  Our elders were a little more prepared but I don’t believe that the baby boomer generation has prepared themselves well enough to be able to cover even a year of living there.  And now that many boomers are upside down on their mortgages, selling their home won’t help to pay for that care.  Not many of us have long term care insurance either. (And in reality, how can long term care insurance continue to exist when almost ALL of us will need it at some point?)

I also think that with health reform, more families are going to be responsible for the care of their elders.  Hospitals will discharge elder patients sooner and before they are able to care for themselves.  This is happening even now !  I literally had to beg that my father be admitted to help remove the 12 pounds of fluid that had accumulated in his legs due to congestive heart failure.  Sure…..they’ll put a defibrillator in an 86 year old man with dementia (because insurance will pay for THAT)  but when it comes to managing the care of that man post procedure, they’ll leave it to the family.   (And they won’t discuss end-of-life care…but that’s a whole other issue.)

Already, a big portion (17% of employees in south Florida, according to a recent study)* are having to leave the work force in order to care for their aging loved ones and another 15% have cut their hours. 

During the past year, as we have experienced a financial crisis, more family members are gathering together under one roof in order to make ends meet.  Do you think that we will return to the days of Leave it to Beaver and Father Knows Best where Moms become the caregivers for the family while Dads return to providing the financial contribution?

In a study reported by Deborah B. Gentry, it was determined that nearly 40% of adult children acting as caregivers had serious conflicts with one or more siblings regarding the care of their parents.  Many times, this was due to the lack of participation of one of the siblings, arguements over finances or disagreements on where Mom or Dad should live.  With a help of a mediator, these issues can be sorted out in a private, non-threatening setting where the family (including the parents) meets together.

Eldercare mediators have taken classes in this type of mediation.  They may be nurses, social workers, gerontologists or they may also be attorneys themselves.  (If they are attorneys, they do not practice law during the  mediation service.)

What does an eldercare mediator do?

• they are a neutral 3 rd party who helps with decision-making processes
• they help clear up misunderstandings within the family by knowing the right questions to ask
• they provide for expression of feelings and yet, keep the family on tract
• they help the family heal hurts, avoid blame and self-pity
• they help the family consider as many options as possible
• they provide for future modification of the decisions made

Mediators do NOT:

• Make any of the decisions themselves
• Provide family therapy
• Practice law

Who is involved in the meeting?

• Parents and siblings should be present.  The meeting may also include spouses, grandchildren, other close relatives, close family friends, caregivers, medical providers, pastoral leaders and lawyers.

What is discussed at the meeting?

This is up to the family members but some ideas for discussion include living arrangements and possible assistance for the parent(s), driving ability, end-of-life provisions, financial concerns, trust and estate issues, division of responsibility amongst the siblings, etc.

The advantages of hiring a mediator are that parents (or spouse) must give permission for the meeting to take place, thereby maintaining their dignity and autonomy by being involved as much as possible.  Also, if help is needed, financial and task responsibilities can be divided up equally among the children (siblings) or a care contract for a sibling that volunteers to be the primary caregiver can be discussed.  Obstacles are more easily overcome when using a mediator who can keep the family focused on the goal of caring for the parent (or spouse) in the best possible way.  Family relationships are also improved because everyone is kept in the loop.  Those siblings who are unable to attend due to physical constraints can participate by telephone or even on the internet.

The cost of an eldercare mediator is about $100.00 – $300.00 per hour but is a good investment in maintaining or building family unity and working to provide a good outcome for your aging parent(s) or loved ones.

Eldercare mediators can be found through state and local Area Agencies on Aging, attorneys specializing in elder law, geriatric care managers, Alzheimer’s Association (especially support groups) and the health department.

Ironically, later in the day, I was reading a story about MSNBC anchorwoman, Mika Brzezinski and her forthcoming book “All Things at Once” where she describes the day she fell down a flight of stairs while holding her 4 month old daughter.  She had been up all night working at the newsroom and because she couldn’t sleep (during daylight hours), had let her caregiver go home early.  She stated that she had picked up the baby and was talking 100 words per hour and walked right off the top of the stairs, landing with her on top of the baby!  The “baby” is now almost a teen and is fine, but can you imagine the horror, the pain, and the guilt that went along with that experience ? 

In the interview, she went on to say that at that point she learned to ask for help.  “If you’ve got a career that you need to nurture, there are going to be times when you need to transfer your authority to others. I will forever regret that I didn’t get help sooner so I could get through that rough patch in my career. ”

I’m sharing this story not just to talk about career vs. caregiving but to say that we must not wait until something awful happens before we ask for help.  Many of have careers and even if we don’t, we may have children and a husband who need our time and attention, as well.  We must not get to the point where we are too keyed-up to even sleep.  We must not let our families go on with their lives without us. We cannot afford to be the one who is admitted to the hospital with heart problems, anxiety disorder or something even worse while our care-recipient is left behind.  When we want to say No to something, we must say No !

If you are participating in a committee that is becoming burdensome, doing work such as cleaning or running errands that could be “resourced out” to another capable person, working with the local women’s group with whom you have nothing in common, not asking your family members (I’m talking siblings here) for help (even little bits of help), please reconsider your actions.  

Don’t wait for a 911 moment.  Just say No. 

Ironically, I know exactly what I didn’t know in my dream.  I know that I have a lot of guilt over the circumstances of his death .  He wasn’t treated well at the hospital; I HATED seeing him propped up in a chair.  I wasn’t there when he passed away in the middle of the night.  Nobody was.  I wish I could change that and therefore I go over and over it in my mind, trying to rewrite the past but realizing that it is impossible to do so. 

According to Dr. Vickie Rackner, author and keynote speaker, “Guilt is a pain that tells you there’s a mismatch between the person you’d like to be and the person you were in that moment.”  At “that moment”, I would have liked to have been the person who stayed at the bedside 24/7 and the person who KNEW to argue for hospice care and kept my father at home .  I regret that I wasn’t.

Dr. Rackner also states that regret and guilt are distant cousins.  Certainly they are related because regret often leads to guilt.

In the book, “The Emotional survival Guide for Caregivers” by Alexis Abramson, Barry J. Jacobs, PsyD states that when a loved one dies, guilt is the 2nd most predominant feeling in a former caregivers’ experience.  There is guilt that they didn’t do enough, guilt that they are now “free” of the burden of caregiving, guilt that they have their own life back.  This guilt can last 6 months or even longer. It comes and goes but is eventually replaced by the knowledge that the disease process and God’s plan were the biggest factors overall.

Guilt is a part of all aspects of caregiving.  Caregivers are often overburdened and torn between what they need to accomplish for their employer, their spouse, their family and their care recipient.  What was NOT accomplished often leads to feelings of guilt. ( I missed the soccer game; I missed spending quiet time with my spouse; I ran in, dropped off groceries, and ran out of my Mother’s house without stopping to chat at length.)  When I was caregiving for my father, I would often feel bad that I didn’t make the time to sit with him and play cribbage or watch T.V. as often as he wished I would.  There was just too much to do.  We DID play Cribbage at least 2 hours almost every night but as he always said “I have all day !”  He did; I didn’t.

Anger can also lead to feelings of guilt.  We feel badly about being angry that we are stressed, overwhelmed, over-worked, tired, etc., so then we feel guilty which leads to anger back to guilt and more anger….a never-ending circle.  Guilt will also cause us not to take care of ourselves, perhaps because we believe we don’t deserve the care  – which of course, will lead to anger, to guilt…and you get the picture.

In order to get rid of the guilt, it is important to acknowledge that feelings are JUST feelings, nothing more.  You must forgive yourself for your imperfections.  You are only human and no human is perfect.

While you cannot change events or all of the activities in your caregiving role, you CAN change your feelings about them and you may be able to change some of the actual activities themselves.  For instance, if you are finding it difficult to have any quality time with your care recipient because you are too busy doing chores, hire some of them out.  (If expense is a problem, The Area Agency on Aging has a scholarship program for a certain number of hours per month where caregivers can do light housework).  (Meals on Wheels may be available in your area to deliver some hot food to your loved one or perhaps your church may have a program.) When you are able to spend some time with your loved one, you can get to (RE)know them better, and enjoy them.

In the last couple of years, there has been a lot of talk surrounding the book The Secret and the laws of attraction.  Part of that philosophy involves a change in the way you look at the world and your role in it.  You CAN change the way you perceive your caregiving role from one of burden to one of gratitude for the experience.  Changing your perception will cause you to (consciously or subconsciously) change your actions in order to align the two with each other.

You must remember that it is absolutely imperative to take care of yourself and to continue to enjoy life.  Do not feel guilty about those things that you do just for yourself (I’m speaking in moderation, of course).  They will make you a happier person to be around. Do not become a matyr; it does nobody any good. 

So how does this all relate to my dream and my feelings of guilt ?  As I thought it through, I decided that I did the best that I could with the knowledge that I had at the time, so I forgave myself .  I had cared for my father in my home up until the last week and a half of his life and I am proud and grateful that I was able to do that.

With the holidays approaching, I wanted to mention something else that Dr. Vicky Rackner stated.  “Consider giving yourself a holiday gift.  Forgive yourself for one choice that brought you guilt.  Forgive one other person for one action that disappointed you.  Forgive the world for the bolt of unfairness that stood between you and an old dream.”

I hope that you can do that.

Registration for the ceremony was offered several weeks ago, but no one was turned away for not having registered previously.  Upon arriving, we were given the chance to choose an ornament to place on the Christmas tree in honor of the loved one being remembered and a marker to write on it.  There were 2 different shapes of ornaments: round and heart shaped.  There was also an assortment of colors from which to choose.  I hadn’t thought of it before, but the colors would be very important to some people, for instance, my nephew passed at the tender age of 6 (hit by a car) and his very favorite color was green. His siblings wrote messages on green balloons at his funeral and “sent them up to him”.

I chose a red heart for my father ( I think because my heart is still bleeding for him) and a white heart with sparkly green swirls for my nephew.

After enjoying a wonderful brunch in the foyer of the church, we went into the worship area for prayers, hymns and a presentation by author and grief support facilitator, Joanne Petrie.  She was a wonderful speaker and stressed that grief may come not only from the loss of a person, but the loss of a situation – divorce, the loss of a job, the loss of a home, (and I’ll add, in the case of many caregivers, the loss of freedom or the life once lived).  She also stated that recovering from grief does not put you back to “normal” but leads you to accept a “new normal”.  How profound.

After the presentation, there was another song and then the names of all loved ones represented on this day were read one by one.  As the name was read, the family members came up to the tree and placed the ornament there.  Many stood for a moment of silence or placed a kiss on the ornament.  Many cried.

The ceremony ended in prayer for those we had lost and for those who will carry on.  Hugs abounded. 

I am now a fan of Ceremonies of Remembrance.  It was a wonderful experience and something that a family member or friend could do each year without traveling to a graveside which might be a long distance away.  I hope that many churches, temples and synagogues will adopt this kind of ceremony if they have not already done so.

I must add that the ornaments were given back to the family members at the end of the ceremony and now my father’s ornament rests on our tree at home in a place of honor.  (I will send my nephew’s ornament to my sister.)

We see them once in a while on birthdays or Easter or something like that but never aside from that.

If I lived in the same town as my grandparents I would not claim being busy as an excuse. You make some time when you want to. I would at least call or drop over to see them every couple of months. We did for our parents and grandparents. We never regret we did, we know we would regret it had we not have.

The are typical religious people. Big on talk, church going but not the best Christians in my mind. I know better Christians who never go near a church. Even if they weren’t the religious type, we always made time for our grandparents, it is the respectful, loving thing to do. No more we guess.

It makes us so very sad. Actions not words are what count.

They never stop by.  We assume we are hopeless/worthless to them anyway.

This is why Olive and I do not want a church service or anything “if” we die. We don’t want people showing up after we are dead that would never take the time to visit while we are alive. I am sure our granddaughter and husband would be at the funeral if we had one. No thank you. That won’t be when we needed them, we need them now.”