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!

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.

Gary’s article can be found immediately below.

“Coumadin^®, available generically as warfarin, has been widely used to reduce the risk of stroke for well over 50 years. Dwight Eisenhower, Richard Nixon and George Bush senior were all taking Coumadin during their active years of former Presidency. Despite millions of prescriptions written annually for this medication, practical, easy to use information remains a challenge.

One of the most common and historical needs of managing warfarin is diet, specifically, dietary vitamin K. Physicians use warfarin to increase the bleeding time in patients at risk for developing unwanted blood clots. The goal is to prolong the bleeding just time enough to prevent clot formation where it isn’t needed (the heart and lungs for example) but allow clotting to take place for normal blood vessel bleeding repair. While warfarin prolongs your bleeding time, dietary vitamin K increases the body’s natural ability to form clots.

The simple blood test called an INR test measures that active anti-clotting effect of warfarin. The higher the dose of warfarin, the more potent or longer the blood takes to clot. A diet high in vitamin K can reduce the effect of warfarin and lower the number of the blood test result. For this reason, it is important for patients to keep a consistent intake of dietary vitamin K to help maintain safe levels of protection warfarin provides without interfering too much.

It is difficult to monitor vitamin K intake when food and beverage labels do not provide this information and the FDA does not require it. While professionals teach vitamin K is abundant in leafy green vegetables – there are many hidden sources patients and their care givers need to know about. Salad dressings and some mayonnaise are good examples.

The vitamin K registry

An easy to use, extensive vitamin K database is available for patients and their family. The vitamin K diary allows you to simply type the first few letters of a food or beverage you’re interested in and a menu of products is displayed listing the serving size and the amount of vitamin K. The vitamin K registry can help you keep balance and choice in your diet. A printable version is also available to assist in creating grocery lists for the Coumadin patient.

The vitamin K diary

The vitamin K diary is an interactive resource for patients or caregivers to keep track of vitamin K intake. While using of the vitamin K registry as a source guide, the vitamin K diary allows the user to record the vitamin K (listed in micrograms) consumed for each meal. The diary, offered as a word document, calculates the total daily and weekly intake of vitamin K. The vitamin K diary is best used 7 days prior to the patient’s blood test to best evaluate the effect of diet and shared with the patient’s healthcare provider.

For other helpful resources on maintaining your quality of life, visit www.PTINR.com  ”

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.)

Courtesy of Tena home health products are some tips to reduce stress during this busy season, written by Ann Cason, a caregiving expert and founder and director Circles of Care.

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.”

In less than 2 weeks, I am planning to attend Camp ReCreation in Orange County, a camp for developmentally disabled “kids”/adults. My daughter, Katie and her great friend, Meghan are co-directors of this camp and I will be serving as one of their camp nurses.  It was one of the scariest experiences that I attempted but turned out to be incredibly rewarding. You cannot attend this camp without coming away with a whole new attitude on life.  This is an experience I don’t want to miss, especially because it involves both my kids (my son AND his girlfriend will be camp counselors) .

Anyway….while I’m away, I need someone to take over care for my father as he requires medications, oxygen and due to his dementia, cannot be left alone .  I was hoping for family support but have not received it.  One sister cannot do it because it will cost her $30.00 a day to have someone care for her cockatoo while she is away.  One sister has not even telephoned my father for over a year, so her help is out of the question.  My mother (who is still married to my father) is afraid of flying (and probably would decline even if she were not).  SIGH

My only solution is to hire his respite worker (because he is familiar with him) at $100 a day, hire a nurse to come out to administer medications twice a day at a cost of approx $240.00 a day.  I’ll need to provide food for the respite care worker (as well as my father, of course.)  The daily cost of his care will be approximately $375 per day.  I’m not quite sure who is expected to pay for this care because I receive a monthly salary from my father’s estate to care for him (which is certainly not equivalent to the amount it will cost to care for him while I am away).

Another possibility is to place him in an assisted living facility for the time I’m away but this will only upset him, increase his dementia and cause me to worry the whole time I’m gone – not worth it.

In the 4 years that I’ve cared for him, I’ve never taken a vacation.  Care giving is a full time job; one would think that it came with vacations but we all know that  it doesn’t.

If I had it to do over again and if I knew that I was going to end up the sole care giver, I would have done things differently from the start.  Even though I think my family is more disfunctional than most, I think there are things that could have been done.  If you have family, there are things that you can do now to prevent yourself from “going it alone”.

First of all, call a family meeting.  If your family is spread throughout the country (or world), try to have a conference call.  Do this as soon as possible after you become aware that your parent or loved one needs help.  If you don’t, then your family will get used to you handling the entire care giving process yourself.  They may also think that you don’t want their help.

In the meeting, set an agenda, set rules, give everyone time to talk and be specific about what you need.  Avoid saying “I wish you would help”.  Instead say,  here is what needs to be done; here’s what I need; here’s when I need it. 

If your loved one needs limited care, consider having one of your grown children stay with him/her.   You know the old saying: grandchildren and grandparents have a common enemy (you).

Set a calendar and fill in all the slots where you will need help.  This will include weekly appointments, senior discounted shopping days, your own family vacation, your sister’s reunion, etc.  Then send out the calendar for the upcoming month to each family member so that they will be aware of when they are needed.

If you feel that you need help with your family meeting, there are geriatric care managers located throughout the country who will help your family to explore possible future needs and choices.   If you feel that your family needs MORE than a care manager, there are now eldercare mediators who specialize in dealing with families who have conflicts arising from eldercare needs.  This seems to be an up and coming (and much needed) specialty.  You may not be able to find an eldercare mediator in every state but you might start with a search over the internet.  If you ever need one, don’t hesitate to contact me; I have a few names.

Some siblings just won’t and DON’T help.  If you have tried everything or if you feel your sibling/family relationships are beyoned repair,  just need to let it go and find a different solution.  You’re not going to be able to change the situation and it’s only going to cause you more stress.  In my case, it’s absolutley no use asking for help from my middle sister.

Sometimes siblings and family members who refuse to help have a good reason for doing so and it may be one that is unbeknownst to you.  It may be anything from believing that your care recipient belongs in a nursing home instead of at home, to having been verbally abused by that parent as a child.  We don’t know; we can’t judge; we must just do our best.

When we cannot count on our family for help, we must learn to utilize professionals.  When the costs are prohibitive, there are certain programs available from your local Area Agency on Aging that provide respite hours including overnight hours. 

You might also speak to an elderlaw attorney to determine if funds from your care recipient (if there are some available) might be used for respite care, because if you cannot take care of yourself, you will not able to take care of your parent or loved one effectively.