One of the first things that must be considered about assisted living is its cost.  Two times in the last month, friends of mine have mentioned that “when the time comes”, they’ll simply move to assisted living rather than burden their children.  But assisted living can cost anywhere from $2500.00 a month for a very basic dwelling to more than $7000.00 a month depending upon the amenities available there and upon the medical needs of the resident.   Both of my friends were very surprised to hear this. 

But when examing these numbers, one must also be aware of the costs of living at home.  By comparing the costs of  home maintenance, insurances, utilities, food, property taxes, possibly a mortage and maybe a gardener and/or housekeeper, one might find that assisted living is less expensive than remaining in the home.  Most assisted living facilities have free transportation so there may not be a need to maintain an automobile either, which would be an additional savings.

If you feel that your parent or parents may be struggling to maintain their home or that they may not be safe there anymore, one way to begin the discussion about transitioning to assisted living is to watch television together and comment on news stories or programs  relating to the difficulties of aging.  Ask how they are doing in relation to the situation you see on television.  Is Mom managing the grocery shopping and cooking without difficulty?  Can Dad still mow the lawn?  Are there small things that can be done to make their life easier or are they at the point where assisted living might actually be a more joyful experience?

Point out the positive aspects of  assisted living…nutritious meals are available; there are crafts and games in which to participate; there are often off-campus field trips;  housekeeping is included; the lawn is always mowed and there are lots of social opportunities.

If they happen to have any friends or other relatives who have moved to assisted living, ask how they are doing.  They may have somepositive or negative experiences which you can explore more thoroughly.  Offer to take them there to visit these friends so that they can get a feel for the surroundings and what is available to them.

Many of our aging loved ones are not aware of the differences between assisted living and nursing homes and therefore may have an unnecessary negative opinion of them.  They may also be embarrassed to discuss the fact that they feel they may be ready for some help with their activities of daily living.

Assisted living is not for everyone, but it’s good to have the discussion early so that everyone will be on the same page when the time comes to make a decision about some different living arrangements.

Here is the e-mail from the grandson:

 
“My Grandma lives in an assisted living facility and  is suffering from dementia, It’s usually not a problem except that she might ask the same question over and over - which is really not a problem at all. 
 
My Grandma has always loved flowers and plants.  She has her share of fake plants as well.  Recently, however, she has begun watering the fake flowers and fake plants and even watering a pen that has a fake flower coming out the back!
 
What can we do so that she doesn’t feel the need to water fake things thus creating messes?
 
I appreciate any input you may have and thank you for all the work you do.”

P.A.

Here is my answer:

Dear P.A.

I’m sorry to say that in your grandmother’s case,  the easiest solution is to remove all plants, both real and artificial, and anything else that resembles a plant or flower.  Perhaps some paintings of flowers that are hung on walls may brighten the area and still be safe from being watered, although careful attention will need to paid to that as well.

Perhaps she could be enlisted to help water the plants in the lobby or when weather permits, the plants on the patios (with supervision, of course).

Because of the short term memory loss suffered by dementia patients, they quickly forget what has been watered and in the case of fish (do not introduce a fish tank into her immediate environment), cats and other pets, what has and has not been fed.  As your family has noticed, the line between what’s real and what isn’t also becomes blurred as the disease progresses. 

You mentioned that your grandmother is in assisted living and that raises a concern.  Is she in an assisted living facility that specializes in memory care?  Is her room easily available to staff who may need to help her and is she checked upon frequently?  Is there anything in her room (or apartment) that could pose a danger to her, such as a stovetop or microwave or even a toaster?  You would be surprised  what persons with dementia will attempt to do with these appliances.  She could easily be burned.  If she’s watering plants, then she has enough time to accomplish other activities, some of which may not be in her best interest.

Does the room have adequate lighting and are all unused electrical outlets plugged with childproof covers? Are cords secured to baseboards? 

 Are the exit windows locked and secure (60% of people with dementia WILL wander).  Does she wear a safe-return bracelet or pendant?

Are her medications kept outside of her room and given to her by professional staff members?  They should be. 

Is her room checked for clutter frequently so that falls are less likely to occur?  Have all throw rugs been removed (another tripping hazard)? 

I wish that I had a better solution to offer as a replacement for the plants and flowers because having something to tend to helps to give a person a purpose in life.

I would love to hear if anyone else had dealt with this situation or  has any ideas that may help!

Usually, the care provided is as good as it can be given the circumstances, but sometimes the care is less than adequate or can even be full of neglect and abuse.  When we see signs of possible neglect or abuse, we wonder how we can deal with it and not create a bad relationship with the staff of the facility thereby subjecting our loved one to even more punishment. 

If the abuse is blatant, it’s an easy call……..get the loved one out of the facility and have charges filed.  But when you simply have a suspicion, a niggling fear that something is not quite right, it’s hard to know what to do.

That is the time to call in a long-term care ombudsman.

A long-term care ombudsman is an official advocate for residents of long-term care facilities.  Under the Federal Older Americans Act, every state must have an ombudsman program.  This program consists of both volunteer and paid members.

Their goals are to provide information on how to find a facility that provides quality long-term care, to assist with complaints and resolve problems in such facilities, to educate both consumers and long-term care providers on patient’s rights, legislative policy, and ways that families and providers can work together.  They also provide community involvement through their volunteer programs. 

When working with patients or patient’s family member regarding a complaint, all information is kept confidential, unless the patient or family requests otherwise.

Problems that they address are violations of resident’s rights or dignity, physical, verbal or mental abuse, deprivation of services or poor quality of care (for example, lack of hygenic care, not turning the resident to prevent bedsores, etc.), unreasonable confinement, improper transfer or discharge of patient (when money runs out, etc.), and use of chemical or physical restraints that are in appropriate.

According to The National Long Term Care Ombudsman Resource Center, the rights of long-term care residents are as follows:

• The right of citizenship. Nursing home residents do not lose any of their rights of citizenship, including the right to vote, to religious freedom and to associate with whom they choose.
• The right to dignity. Residents of nursing homes are honored guests and have the right to be so treated.
• The right to privacy. Nursing home residents have the right to privacy whenever possible, including the right to privacy with their spouse, the right to have their medical and personal records treated in confidence, and the right to private, uncensored communication.
• The right to personal property. Nursing home residents have the right to possess and use personal property and to manage their financial affairs.
• The right to information. Nursing home residents have the right to information, including the regulations of the home and the costs for services rendered. They also have the right to participate in decisions about any treatment, including the right to refuse treatment.
• The right of freedom. Nursing home residents have the right to be free from mental or physical abuse and from physical or chemical restraint unless ordered by their physician.
• The right to care. Residents have the right to equal care, treatment and services provided by the facility without discrimination.
• The right of residence. Nursing home residents have the right to live at the home unless they violate publicized regulations. They may not be discharged without timely and proper notification to both the resident and the family or guardian.
• The right of expression. Nursing home residents have the right to exercise their rights, including the right to file complaints and grievances without fear or reprisal.

If you feel that your loved one has been denied any of these rights in the facility in which they are residing, don’t hesitate to contact a long-term care ombudsman in your state.  Call 1-800-300-6222 or check The National Long Term Care Ombudsman Resource Center to find resources in your state.

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?

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.

Over time, the caregiver child  frequently finds the necessity to leave the work force as the labors of care giving become too time consuming and/or stressful.  Vacations and sick leave had been utilized when a parent was hospitalized, leaves of absence were taken during extended illnesses and recovery of their loved-one.   I have noted on many forums, adult children asking advice on whether or not it was fair to use their loved one’s funds to help ease the financial burden that care giving  often causes.  As the aging population in the United States increases, more and more workers in their “sandwich years” are finding it necessary to leave the work force.

None of us feel comfortable accepting payment for caring for our parents or loved ones.  After all, they cared for us as we grew into adulthood; shouldn’t we be there to care for them too?  We would all love to be in a financial position to provide such care without compensation, but the truth of the matter is, most of us are not in that position.  Most of us need some kind of an income to support ourselves and our family. 

When a caregiver leaves the work force to care for an aging parent, they are giving up many things: an income, of course, health insurance, social security contributions (which will cause a reflection in their own social security benefits later in life), employer contributions to their retirement plan, and the chance for advancement in their career.  In addition, there in an increase in food, utility, and fuel costs in the caregiving home.

Elder law attorneys are recognizing this fact and are beginning to address the issue of compensation for the caregiving child as they work with  aging parent to have their affairs are arranged.  A parent will often suggest that a caregiving child be left an additional bequest in his or her will in recognition of the services that he/she provided.  Mr. Bernhardt and Mr. Wytychak, an elder law attorney in northern Idaho state that this is not a good idea for several reasons.

First of all, with the high cost of long-term care, there is no guarantee that there will be any funds left over to pass along. 

 Secondly, an unequal bequest may cause jealousy amongst the other siblings who would receive less and who often can’t comprehend the stresses and financial burdens of caregiving.

Thirdly, if one is working towards “spending down” so that Medicaid will be available for additional long term care, ” gifts” are not allowed to be given to ANY child (except by trust to child with a long-term disability), without penalty.

Therefore, the best strategy is to set up a caregiver contract between the infirmed parent and the caregiving child, drafted by an attorney who represents the elder and reviewed by an attorney who represents the caregiver (although the latter is not necessary).  The agreement details all services that the caregiver will provide, which costs may be charged to the elder (medications, personal toiletries, gifts to grandchildren, etc), and the amount of compensation. 

The contract is very useful because it is evidence that the payments from parent to child are not gifts and therefore cannot cause a penalty when applying for Medicaid.  It is also an attempt to reduce friction between family members because the parent is clearly stating their intention. (Friction often still exists, though, because, again, the siblings do not see the day to day activities of the caregiver.)

When a caregiving contract is put into place, the caregiver who is receiving the compensation, must supply a financial report to the courts once a year in order to show that no additional monies are being removed from the infirmed parent’s account.  This accountability is actually a benefit to the elder, as well.

In the experience of most elder law attorneys, parents realize that they are asking a lot from a caregiving child and are greatful for the care that they are receiving (although many times they lose the ability to say so).  You must NOT feel guilty.  If you are caring for an aging or infirmed parent, please consider consulting a reputable elder law attorney for advice on how to proceed.

Sometimes referrals come from friends, sometimes from support groups and hospitals and  sometimes simply from searching through the yellow pages or googling the internet.  This takes time and is also not a guarantee that the resource you DO find is the best one for your particular need.

Recently I discovered a great internet resource called The Senior List . Its Co-founders Chris and Amie Clark describe it as “a national online resource that helps match people with senior-related services in their communities” and comes complete with consumer reviews. 

Once entering their site, you simply click on a state, then a particular city and you will receive a list of providers in that area under the categories of housing, professional care and ancillary services.  As I was exploring the site myself, I noticed that the elderlaw attorney that I had utilized to set up much of my father’s affairs was listed.  Because I had an excellent experience with him, I will now go back and leave a positive review. 

The site also offers educational articles and links to other important resources.

According to Baby Boomer Insights, a blog about those of us born between 1946 and 1964,  “already, there are over 8,000 businesses in the database, but for it to realize its full potential, businesses need to list themselves and consumers need to rate the services they use so that others can benefit from their experiences. Businesses that don’t consistently receive at least three stars (of a possible five)  from consumers are dropped from the site.”

The Senior List is a great resource for care givers nation-wide. We, in the sandwich generation, often use the internet  and because  we often find it difficult to “get out” or because we are care giving by long-distance, this type of solution just makes sense.  If we can see that others have used a particular person or service with success, then we can be confident that we are doing the best we can for our loved ones. 

Won’t you take a moment to check out the site and if their are any resources listed with whom you have experience, or if you’d like to add a business that you would recommend to others, please do.

These bath tubs are advertised as being great for elderly, disabled or mobility-impaired individuals.  They are made of fiberglass or acrylic, are found in sizes ranging from 48″ X 28″ to 60″X32″  and are said to fit any bathroom.  If the bathtub area is too big, there is an “extension kit” which essentially adds a shelf area to the tub.  They each have a seat installed and there is also the option of choosing one that is complete with a hydrotherapy unit (we chose this option because my father has both arthritis and leg muscle cramps).  The cost for these units can be in the thousands, so it is a fairly expensive purchase but can be one that enables a person to continue to live at home rather than in an assisted living facility.

Having experienced the walk-in tub for over 6 months, I am going to say that it was not the right choice for my father, but it may be a good choice for other senior citizens.

The positive aspects of it were the built-in anti-slip seat, the anti-slip tub floor, the low-level entry, the temperature control (it does not allow the temperature of the “hot” water to be hot enough to burn), the height on the sides of the tub which helps to keep my father from falling, the ease of cleaning the “unit” and the hydrotherapy.

The negative aspects of it are that it is an almost claustrophobic bathing experience when using the shower curtain, as the bathing area is very small.  Additionally, if your bathroom is such that an extension (or shelf)  is required, the shower curtain must sit on the inside of the tub making an even smaller bathing area. 

This is definitely not a product that will enable a person with dementia to have more independence.  It’s much too technical.  Once entering the tub, there is a special lever that must be pulled in order to make the tub water-tight.  My father is confused by the hand-held shower sprayer (doesn’t realize that it can be left hanging in its casing) and several times, I have heard him turn on the hydrotherapy jets without having any water in the tub (is a burnt-out motor in our near future?).  He also forgets (with short-term memory, that means 2 minutes later) that the shower curtain must be on the inside of the tub itself, so very often, we are sopping up water from the floor after his shower (water on the bathroom floor contributes to slipping, as well.)

It is also NOT conducive to caregivers helping with the showering of  the patients or loved-one.  The sides are too high, thus contributing to back strain and the water does not stay in its designated area.  If a caregiver was helping  their loved-one to bathe (rather than shower), it would be fine.

I think this is probably a great product for those in their late 60s and 70s who may be “a little wobbly” and could use the extra support and also benefit from the hydrotherapy.  I don’t think it’s a good product choice at all for those with dementia who are trying to continue to bathe on their own.

Your thoughts?

Please see our YouTube video on this subject for more information.

How does one deal with the guilt?

Be realistic. Take comfort in the fact that you’re doing the best with what you have available to you. If adult diapers are not something you can handle, especially when you are female and they belong to your FATHER, then hiring a caregiver or considering assisted living may be the BEST alternative.

 Be aware that you have rights as a caregiver and that caring for a parent should NOT make you sick nor give up your own life; therefore, you should not feel guilty for taking some time for yourself and for your family.

Be gentle with yourself.  Guilt is like the other (numerous) emotions that come with caregiving.  It is like a cloud floating by, with another cloud of emotion next in line.