By Shelley Dombroski
In the Beginning
In 2001, I was stunned to learn that my 54-year old sister-in-law, Patt, was diagnosed with Alzheimer’s, a disease that primarily strikes the elderly. At the time, I wondered, how could this happen? Patt was a vibrant, funny, youthful woman – only six years older than myself. I soon discovered that Alzheimer’s disease is not just a disease of old age – that up to 10% of people under the age of 65 are diagnosed with early onset Alzheimer's disease.
As Patt’s primary caregiver, I quickly concluded that I needed to prepare and educate myself about the disease in order to meet the many challenges and ease the difficult transitions that Patt would inevitably face as the disease progressed. During this time, Patt and I had many long conversations about what the future held. We both agreed that when Patt could no longer speak for herself, I would become her voice – her advocate. To fully prepare for the future, Patt executed an Advance Directives for Healthcare (as well as a Durable Power of Attorney for Finances) and appointed me as her agent to make medical and financial decisions, as needed.
The Middle Years
Over the years, many hurdles were faced – from fluctuating mood swings to her need for increased assistance with activities of daily living. Through these difficult transitions and despite the many physical changes caused by the disease, Patt’s feelings remained and she was much more open emotionally. Her quality of life was largely dependent on her interactions and relationships with others – and an affectionate smile, a warm hug, a soothing song, a hearty laugh and a chocolate nibble crossed all boundaries. Patt lived in the moment and I soon discovered a deeper connection with her when I entered her reality.
The Later Years
When Patt began exhibiting periods of aggression and restlessness, it was largely unforeseen and distressing. Past strategies of using affection and humor in trying to redirect her weren’t working. Patt’s caregivers were also having a difficult time providing the proper care that was needed, due to her restlessness and aggressive behavior. After a urinary tract infection was ruled out and no possible triggers could be identified, Patt’s doctor began making adjustments to her medications. Unfortunately, these adjustments caused extrapyramidal symptoms – increased restlessness, involuntary irregular muscle movements and instability – so continued monitoring and medication adjustments were needed.
I received an early morning call from Patt’s caregiver informing me that Patt upon awakening began screaming and swearing one minute while hysterically crying the next. Efforts to try and console her only exacerbated her anger. When I arrived at the the board and care home, they told me that Patt could no longer remain there until her behavior was under control.
With Patt now in my car and after considering my options (which weren’t many), I drove straight to the hospital emergency for medical assistance. During this drive, I noticed that Patt now appeared extremely calm and collected. I immediately called a geriatric care manager I had been consulting with over the years, questioning whether I should take Patt to the emergency room since she now appeared so quiet and relaxed. The care manager’s response was, “Just wait until you walk through the doors of the ER.” Boy, was she right!
The first person we saw in the ER was the intake nurse. The moment the nurse put the blood pressure cuff around Patt’s arm, Patt started cussing and screaming. The nurse immediately called security and for the next 10 hours we had a security guard outside our door. This new environment, filled with strange sights and sounds, only angered Patt more. The hospital staff seemed alarmed when I told them that Patt could no longer return to the board and care home and I could not take her home with me. Their response? They could not admit her because there was nothing medically wrong with her. Luckily, Patt did have a urinary tract infection afterall and was admitted to the hospital. She remained at the hospital for a week and was then transferred to an acute care center for continued behavioral observation and treatment.
What I Learned and What You Can Do
Think about and discuss hospitalization before it happens. Planning ahead is crucial for making an unexpected or planned trip to the hospital easier for everyone involved.
Be prepared for an emergency visit or unexpected hospital stay by assembling an emergency kit that includes:
- A list of all current medications and dosage instructions.
- A list of medications that have caused an allergic reaction.
- A copy of the Advance Directives for Healthcare, Living Will and/or DNR (do not resuscitate) order.
- Insurance information (insurance policy number, Medicare and/or Medicaid cards).
- Contact information for key family members and friends.
- A change of clothing and extra adult briefs (Depends), if worn.
- A notebook and pen to write down informationn and directions given by hospital staff.
Be sure that hospital staff who will be interacting with your loved one know that he or she has Alzheimer’s disease or another dementia.
Remain calm and be patient. If you are upset and distressed, your loved one may mimic those feelings.
Do not leave your loved one alone -- make sure there is a continuous presence of a family member or trusted friend. It’s important that someone is available to advocate on behalf of the person with dementia. Don’t be afraid to voice your concerns.
Always communicate a sense of security by providing a gentle touch and continual eye contact. Distraction with offers of snacks and beverages often helps.
Remember that not everyone in the hospital knows the same basic facts about memory loss and Alzheimer’s disease. It’s important for you to educate them about your loved one. You may need to help coach hospital staff on what approaches work best and any suggestions for reducing distress.
Avoid guilt and embarrassment. Any feelings of guilt and embarrassment for any odd behavior will only get in the way of your advocating for your loved one.
Reach out for help. Trying to do everything yourself can be exhausting. It’s important to recognize your limits and ask for assistance from family, friends and community resources. Know that only when you first help yourself can you then effectively help another. Support groups can be a valuable resource for sharing feelings and concerns, gaining emotional and moral support and obtaining practical information. In addition, the Alzheimer’s Association offers a 24/7 Helpline (800-272-3900) staffed around the clock by professionals who understand the disease and its impact and can provide valuable information and assistance.
Do not assume that your loved one will be admitted to the hospital. Work with the healthcare providers to plan for long-term care. Make sure you understand what must be done after hospitalization.
Caring for a loved one with Alzheimer’s or a related disorder can be challenging at times. However, through my caregiving journey, there were many gratifying and heartwarming moments with Patt that will stay with me forever and ones I will always cherish. Most rewarding for me is knowing that I kept my promise to Patt that when the time came I would be her voice – her advocate.
One thing I know for certain, if the roles had been reversed, she would have done the same for me.
