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Sunday, January 29, 2012

Dealing with Dementia

Time waits for no one.  It was brought to my attention that my blog was in hibernation and readers were wondering why.  Well, aside from my normal busy life here on the farm, my days have been preoccupied with the constant caring of my father.  His dementia, along with his bad knees at the ripe age of 84 has me on constant standby waiting to hear from his caregivers. 

One thing that all humans will deal with during their lifetime is the absolute certainty that their parents will get older.  You have a choice whether or not to bring children into this world.  But our parents are like food and water – they are necessary for our being here.  So, it follows that as they once took care of us, it is in the cards that eventually we will return the good deed.

I have researched and chronicled the onset of Alzheimer’s in dealing with my father and I am finding that although there are institutions and organizations and even support groups that help families with dementia and the probable onset of Alzheimer’s disease – there is no real relief for him!!!  My father’s world is by the minute and what is important to him in that brief moment of time.
To help anyone who must go through this hurdle in their own family or if you know someone going through a dementia type disease, I am offering a few helpful hints that you can refer to if you are finding an overwhelming need to scream.  Take from it what you need and leave the rest for a later day.

1.      Alzheimer’s Disease (AD) is one of the most costly diseases to society.  The long term care by the healthcare professionals, whether it be institutionalisation or private home health care is out of the ball park.  So, it is imperative that before it becomes a crisis – get your parent’s finances in order.  Many times we assume matters are taken care of but sometimes a simple will has not been updated, or a life insurance policy has lapsed.

2.      There are many organizations that will offer financial help BUT there is a caveat.  If your parent receives social security of more than 25,000/year (this amount may vary) you will have a very hard time getting money.  If your parent is a veteran and has NOT been wounded in a war – you will not receive much help.  Medicaid will help if your parent receives less than 25,000/year but you will have to sell their home.  Without going into all the details – go online and check out the guidelines for your state.

3.      If your decision as a family that the parent remain in the his/her home for as long as it is deemed safe, make the phone calls to all the organizations dealing with elders, including the agencies for caregivers.  Our decision was NOT to go with an agency because we did not want a lot of strangers in the house confusing my father any more than he already was.  We went with networking and got some names of local people that were CNA’s (certified nurse’s aides). 

4.      Talk to people and read the literature – there is no better understanding of Alzheimer’s than by hearing firsthand what families go through.  A wonderful book called “Still Alice” by Lisa Genova is an excellent fictional but informative story about a woman who enters into the onset of Alzheimer’s in her 50’s.

5.      Listen to the parent.  My father is in and out of dementia, so there are many times when he is very lucid and he has things to say.  Do not assume your aging parent is babbling and that he or she does not know there is something wrong.   The frustration level is high.  And the cognitive part of the brain is like scrambled eggs.  You may have to repeat something you said to them 5 or 6 times in the course of one hour.  Yet, it is very often their long term memory is in tack and they can tell you what hospital you were born in and the doctor’s name.

6.      Keep records.  Everything is important.  Because there are so many people involved in your parent’s life (i.e., caregivers, doctors, family members, neighbors) write everything down!  Sometimes the adage “too many hands spoil the soup” applies.  Assign tasks and duties when appropriate to specific people.  And have a log book available where anyone who comes into your parent’s home can jot down what they saw or did.  Sounds a bit crazy but VERY important.  Medications can get misappropriated and meals can be skipped.  It is extremely helpful that there is consistency in the home and your parent has a solid routine.

7.      Take deep breaths and wait!  If your parent calls you in a panic – wait.  Usually, the anxiety subsides and all is well within a few hours.  Persons with dementia will frequently focus in on one subject matter, such as money, and become obsessed with concern.  Nothing can deter them from agonizing over it and it can become very wearing on a caregiver.  So, again, breathe!

8.      Keep doctors posted.  It is not unusual for an elderly person to have 4 or 5 doctors or health professionals whom they visit regularly.  My father is not a sickly man and he has a cardiologist, a dermatologist, an oncologist, a neurologist, his primary doctor, and his physical therapist. Keep all doctors apprised of all changes in your parent’s health.  Don’t rely on records being forwarded or test results being sent to the primary physician.  Even if files are referred there is no guaranty that doctors will read files before patient’s visit.  Know what is in those files.  There were many times when I was asked about the medications my father is taking and his history was right there in the file.  Or it should have been there.
9.      Consider the feelings of all family members.  What may seem arbitrary or mundane to some may seem astronomical to others.  Everyone has their own emotional scale.  Allow all members of the family to participate (or not) in the decision making and caring of an elderly parent.  Sometimes delegating duties helps to relieve the stress on the designated appointee. 

10.   And lastly, if you are able to hire good caregivers, other than family members, listen to them.  Many caregivers have seen or dealt with Alzheimer patients.  They know what it’s about.  They may have good suggestions.  But always go with your gut.  You know your parent better than anyone.  If your parent is agitated or unusually aggravated hear what they have to say.  As I mentioned before.  There are moments of lucidness and an Alzheimer patient can at times be totally aware of their illness, and therefore, be able to express some unnoticed needs.

It has been six months and counting and it appears calm on the home front. As a family we have been able to keep my father in his own home surrounded by his own things.   My only long term concern is for myself.  Can I live with the fact that maybe one day down the road by father does not recognize me?  Or will our conversations be only about the weather and what he had for dinner?  For now, I will cherish the time I do have with him.  For whatever we face tomorrow I am so grateful and blessed to still have him in my life and my children’s life.

Love you Dad!