Dora’s Journey

  Dora's Journey began in 2000. Working in the field of geriatrics as a social worker, I had been exposed to men and women  in my intership &  fieldwork in college. The patients  were in different stages of Dementia and or  Alzheimer's. Everything a student learns in college is far from reality until you see your own parent experience decling memory and erratic behavior. My mother had a stroke so her condition was classified as Vascular Dementia. After her stroke she was no longer ambulatory. After a series of exams with a Nuerologist and Psychiartrist, our family received the diagnosis. My mother was cared for by my father for five years at home with the help of home health aides. The  person who was mostly affected by my mother's ALzheimer's  was my dad, who had planned to spend his retirment  with his wife traveling the country and enjoying life.(His chidren  take him travelingnow and he goes on vacation). 

    LIfe had changed for ever. Luckily with my background in social work and geriatrics, I felt it was time to have a meeting with my siblings and mom's famiiy. Too many times in some familes, one family member takes totally responsibility for a parent. Far too many times a female from the family, being a daughter or daughter in law or sister becomes the care giver. In my opinion this is not fair. THe care for a family member is not a female job only to be placed upon them without question. IF there are sons, they also have  as much and the equal responsibility to care for mothers and fathers.  I always told my siblings, mom didn't give birth to just one of us. SHe gave birth to all of us and we ALL wil take some repsonsiblity for her care and my dad's health  and well being.Luckily we do not have a dyfunctional family and to date ten years later, we all share in our parents care. We as children learned to emulate my mother who had also been a caregiver and a nurse her entire life. We all remembered my mother's compasion, empathy, patience and love with the elderly. The greatest  gift we bestowed on my mother was to emulate her example in caring for  the elderly seniors. In Hebrew it is called a mitzvah! A blessing. TO date we are setting that example to all our own children, because if we don't set the example and try to  protect our children away froom nursing home and  elderly sick, how will they learn to care for YOU someday? This is part of a life cycle.

      From my years of working in assisted living and nursing homes, this was not the scenario that would play out in my family where one person would take care of my mom.   I did initially bring my family together to discuss my mother and the care I felt she needed and deserved. THe first family group meeting that took place was to inform my entire family about ALzheimers and what we could expect in the following years. to come. No one understood anything about ALzheimers and one or two  extended family members ( aunt)  out of ignorance and fear felt she  could not handle the facts. I purchased the book which I feel  is the  Alzheimer's BIBLE: THe 24 Hour Day. There are other books that are also well written.  This particular book  24 Hour Day is clearly explains  what family can expect with a love one who has ALzheimers. The information in this book  can be easily understsood by anyone with an 8th grade education. After my family read the book, we reunited so they could ask me any questions pertaining to my mother declining health. It was agonizing for several of my siblings.  They noticed the personality changes and  the change of mood. Mom was loosing her orientation to Place and Time.  INdividuals with ALzheimers are classified as being oriented in three axis classification:Axix 1x   PERSON.> knowing who is around you, being able to identify them by name not just my sight. 2x - By Place_ understanding and being orientated to where they are, eg, home, nursing home, hospital, ect. ect. 3x- by TIme_  The individual is orientated to what the  day of the week it is, the  season they are in eg. Spring, Summer, Fall or Winter  and  if it is day time or night time.

   My suggestion to anyone who has initally started to care for a loved one or is a caregiver. Journal your day. This is extremely important for a form a therapy for the individual doing the caring and is also a tool for changes taking place and notes that are later instrumental when appointment with doctors take place. IF journaling is not possible, tape recording notes or something about your loved one or any medical or pyschological changed can be recorded for future reference.  The journal was also kept by the personal caregiver that worked eight hours at home with my mother. This included eating habits, medications taken, fevers, changes in urinations, balance, gait with walking, any behavior that was getting worse or declining.

   One of the most important items that I must stress is to please thoroughly investigate the care giver who you hire to take care of your family member.  See proof that the CNA worker has been immunized with all shots and immunizations- flu shots, HiNI shots. Why jepordize your loved ones health. As if they  have ever been dismissed from any kind of employment. Ask if they haver ever been convicted of a crime, driving record vip(if they drive a patient). Whether they are from an agency or you privately hire a CNA- ask if  you can take their finger prints and License. IF their answer is no, RUN and dismiss the individual, explain the interview is over. ***I used to say my  brother worked for the feds and would check the individual out with Dr. LIciense and S.S. number. ONe individual I was interviewing that appears very neat and solid walked out. I did check her out  and she had been convicted of grand larceny. NOt a good thing if the person has to be trusted in your residence with valuables. This is not a good sign. There are  caregivers who DO have a criminal background.  Do not take the word of the home health agency to thoroghly do a background check. Just ask the Home Health Care ag ency that you would like to examine the question and verifications to the security questions.****I would always tell my clients and patients families Place your valuable in Bank Vault, because if stolen you have no proof and it's difficult to convict without proof. Don't leave money or temptations out lying around  your home.)  

     You can never be too safe. Ask for References and make sure they are not fake referenes given by a family member of the caregiver or friend.  Too many individuals have not been performed their job accordingly to the job discriptions. If a parent is incontinent, instructions to change a parent must be stressed to the Caregiver without fail. If the patient is not changed properly and accordingly as much as possible, you will have a patient or parent have repeated UTI"S Urinary track infections, which cause undue problems. 

    Care givers CNA should bring their own lunch and not eat the family food. This is a NO NO> and unfortunately  many times, CNA"S can easily take advantage of the family. Drinks are okay. Other issue which comes up is that the their shift.CNA"s will often attempt to leave a little earlier than their shift hours. THis is a large problem. This must not take place more than a few times  and always report lateness and early departures to the Home Health Care Agency. Tell them this is not acceptable, Everyone has family issues and problems. Do not allow them to play the sympathy card. IT's a job. 

      UNfortunately, very often families are told  and assured that CNA"S are trained in CPR and are supposed to know when to call 911. GIve a CNA a hypothetical scenario. FOr example I once asked a CNA< if my mother fell over a chair and she was on the floor lying awkwardly positioned, what would you do? SHE immediately answered. PICK HER UP> NO, this is not the correct answer. THe answer is you would first examine to see what part of a limb is hurting or cannot be  touched. IF an arm or leg is attempted to be moved or lifted and the individual grimaces or screams and is contorted in an incorrect position,YOU CALL 911. By picking a person up, you can further injure them with possible  broken ribs or broken hips. Cracked and punctured ribs can pierce organs. This CNA was not trained properly and left our home within the hour back to the agency. UNfortunately Many of the CNA"S are not paid very well and the  inservice training does not exceed more  than a few hours at an agency. Do inquire on how a Personal Care aide is  trained to deal in different medical situations. Do they know what do do if an individual is diabetic and their sugar drops? The signs and symtoms of low blood sugar short of resemble a heart attack sometimes. If  your parent is diabetic, additionally training is needed for the CNA employee. A Diabetic person with Alzheimers can go into a diabetic shock. Do they know that a drink of coke or orange juice will help?  IF they don't, they should be told to call 911.These are just a few of the items that are important when having a personal care aide. Years of experience often do help with references. FOr more sense of security, a baby nanny camrecorder  with audio recording is always an additional  security option to have in a parents room especially if they are bedridden. MOst importantly, it can be hidden. Quite a few family members have been shocked to see and hear what takes places when they leave their loved ones in someone else's care. REmember you have this option.IT's  your right to keep  your family SAFE.

    So dad was mom's nursre for several years, until the family decided it was time for mom to go to a nursing home. I explained to my family that mom would have a three-four month adjustment. SHe would give them a very difficult time. There is anger and  then comes resolution. After two months mom never mentioned her home again. Placing gulit on the person who they feel placed them in the nursing home is quite difficult. Remember it was done on the doctor's advise and because of a safety issue. Do not allow the guilt to swallow your sensability.You know you did the right thing. IT is not called abondonment. HIgher level of care is the genral term doctors used as a reasonalbe  explanation to patients. Blame and guilt are the gifts that keep on giving. DO not buy into this gift. Very few people who have dementia/ Alzheimer remain at home forever.

     Sometimes my mother would remember the names of the midication the nurses would be administering and would say, Are  you trying to kill me? She would refuses her meds. THere is laughter and tears and adjustment to be made in a nursing home. WE all have to remember that Nursing Homes do not provide you with private care. One CNA will be in charge of 12-15 patients, so at the  snap of a finger, they will not be attending your parent or loved one quickly, everyone waits.  Being in a nursing home may be considered sad, yet family has to consider that staying at home can often lead to other physical injuries that are self inflicted when our love ones fall or they no longer  have balance to stand.  The caregiver can burn out and their own health is at  risk. Free Respite Care is available  in many areas for family members so the care giver can recoup and take a much need break for a vacation or just rest.

     Warning to those individual going into Nursing Care. Psychologist and Psychiarist are a constant in the lives of the elderly. Beware of the multitude of psychotrophic medication and the side effects they cause. THey are used to control the aggresive behavior and aggitation of Alzheimers patients.  Initally, my mother was placed on Risperadal and Celexa. WIth in two month I s topped the medications. NO person can force  you to take meds.  These are to  control the individual in to submission and good behavior. THese are Not necessary!!!! Unless the patient is combative or causese harm to themselves and others, In my opinion everyone should be aware of the side effects of these medications. IF you do not want your parent sleeping half the day and being a zoombie. in my opinion, I personally would not allow by mom to  takes these meds which have detrimental side effects (involuntary moments of tongue smacking and lips circling the mouth) dykensia- Stay away from them. They build up in the system and can affect the liver as well. They are toxic in my opinion. So many people never question the doctors. This is your right. Do not have anyone over medicate  your loved one. So many physicians love to prescribe medication for depression, I swear I really believe they recieve a kickback. Someone explain to me asto why an individual would not be sad (not depressed if they are in a nursing home- away from their surrounding,home and pets?) My promise is that if enough family goes to see the Alzheimers patient once a day or several times a week,  your family member will not fall prey to b eing medicated by doctors for depression.  How many people would be happy with underlying medical problems and  loss of control? THe meds very often  upset their stomach on top of Aricept and Namenda which are a few of the medications  used for ALzheimers. From my working experience with individuals who have Alzheimers- the build  up of medication in their system results in them  becoming impacted becasue they can not digest food and medication. LOss of appetitie is also quite prevelant.

    Mom is now on NO medication beyond VItamine C and calcium.  LIving in South Texas I have instructed my father to take mom outside at least 15 minutes a day. The sun is necessary and important. so the elderly do not have vitamin D Definciency. 15 minutes of sun will not harm anyone. IT clears the mind and fresh air never hurt anyone. AIr can sometimes be stagnant in nursing homes, even if an air conditioner is on. Ask when the nursing home last clean the air conditioning filters?  Mom  has some long term memory left. We are bless and grateful. AS long as  she is not pressured to hurry, she is fine.When  she makes an attempt to speak abou a peson or some situation which she gotten confused with , I tell my dad, DO NOT CORRECT mom< JUST GO ALONG with the reality of her conversation.  When you speak to mom. Slow down and allow her to digest and think about what you asked or what you said. Why start a battle? Why make mom feel bad?  Generally I have have my own term which i call looping. Bring  the ALzheimers patient back to what ever  you were  saying as you did when  you were speaking to a young child.

   This serves not to demasculate or embarass the person into feeling bad  or embarrased about themselves. At the end of the day, does it really matter that mom didn't remember a conversation, what she as told yesterday,  who saw her, or what she ate for lunch or where she lived before"? NOt at all. LOved ones with ALzheimers live in the present. Tearfully, we may feel the pain or loss  the Alzheimers patient may no longer have around us.  not being able to remember the past can be recounted with photos and identification.  We must let go  of the saddenes because the truth is that the  reality is that your love one is here with you today. They are  properly being cared for by great staff at a nursing home.  Be prepared to hear everyday  hear a complaint about the food in the kitchen or who they don't like or what they don't want, ect. ect. They just want to have someone listen to them. Do not patronized them or be condensending. Just allow them to tell you anything. Talk and allow them to  they share their life with  you. Ask them questions if all their memory is not gone, journal their life with questions. Our family made a book about my parents and every decade they spent together through photos. We had it printed. IT was the best gift. My dad deserves so much credit. HE is lucky to live next to the nursing home my mom resides at in Texas. HE eats dinner everynight with mom. After dinner they hold hands until it's time to put my mom to sleep. HE leave and walks back to his apartment alone perhaps but knowing that his 60 year marriage remains with as much love as the day he married my mom.  This is DOra's journey.--- Ps. FOr all other family members, do not  fear ALzheirmers-if it runs in your family- yes you have a 50% chance also getting this condition- educate  yourself- take care of your legal paper work, pay an elder law attorney to advise you and tell your children your wishes. Lastly, if  you are a Veteran and have a very low income families. There is a housing benefit for past war veterans of $1700 that assist in paying for housing in assisted living facilities or in a nursing home.  PS PLease excuse my grammar and spelling, I have CHemo Brain but in remission.P.S> No one steals mom or dad's clothes that go missing. Sometimes other residents walk into rooms and take items and clothe, they also give clothing away and will just take a sweater left on a chair, To avoid, make arrangements for some to do mom's clothing and LABEL as much as possible. Do not send mom with jewelery and fine clothing. Hope this has helped someone.Dalia