Watching a Parent Who Has Pick's Disease Slowly Slip Away - Part 1
I remember my mother being a fun and outgoing person, we used to spend time together sitting at my little table and chairs when I was a child. We would eat dinner together in the living room, while watching tv. She was always there when I needed her, even when I was having my daughter.
Soon after my daughter was born, I moved away to North Carolina. I decided that it was time to move back to Texas, so that I could get family help and support. I was a single mother of two kids. My mom came out to North Carolina and was helping me move, it was February of 2005. She seemed a bit off to me, and would say that she was seeing people when she wasn't. This was the first symptoms that I saw, which later she was diagnosed with having a rare form of Alzheimer's called Pick's disease. When we made it back to Texas safely, it was a few weeks later that my mother was forced to take a leave of absence from her job as she was beginning to make too many mistakes.
This was very hard for her to accept and she was in denial that she even had a problem. She started seeing a Neurologist, who began to help us understand what was going on with my mom. Even in her state of mind or lack thereof, she was always happy with the simple things in life. She loved Dr Pepper and Ice Cream.
Signs and Symptoms of Picks Disease
Pick's disease is a different form of Alzheimer's. This disease attacks a patients frontal lobe in the brain and produces different signs and symptoms than your typical case of Alzheimer's. The disease causes the brain to shrink and the patient will slowly get worse. From what I noticed from my mother's symptoms, she still had her long term memory; however, her short term memory was affected.
- Compulsive behavior
- Inappropriate behaviors
- Problems with personal hygiene, such as simple grooming habits
- Unable to hold down a job
- Can't function or interact in social settings
- Repeats things
- Withdrawals from social activities
- Inappropriate mood
- No longer cares about events, activities, or the environment
- Failure to recognize their changes in behavior
- Abrupt Mood Swings
- Decrease Interest in Daily Activities
- Failure to show Emotion
- Repeats what they are told (similar to a parrot)
- Difficulty finding a word during conversations
- Change in ability to read or write
- Can't speak
- Can't speak with proper speech or understand it
- Limited vocabulary
- Weak speech sounds
- Memory loss
- Movement and coordination problems
- Increased muscle tone
- Bladder Leakage
My mom showed some of these signs in the early phase of her disease. As time progressed, the symptoms would get worse and new ones would begin to surface. She was given 5 years to live from the onset of her symptoms. I am guess she started showing symptoms in 2004 or earlier, and were probably unnoticeable at first. When I returned home in 2005, I noticed some of the symptoms that are listed above and told my father that there was something wrong for sure. Her first symptoms that I recall were: repetition of words (her famous saying was "Oh Stop It") or she thought she saw people such as my brother driving down the street (at the time he was away on a military tour in England).
Find A Support Group
As a caregiver to a patient that is diagnosed with Pick's disease or Alzheimer's, you will be faced with many difficult decisions in the days ahead. It is best to find a support group so that you can get help when you need it, whether you just need a listening ear, need help finding resources, or asking for assistance caring for your loved one.
The Alzheimer's Association is a great place to find resources for caregivers and family members. Some of the services that they can assist with are:
- Daily Care - bathing, eating, dressing, incontinence, ect.
- Behaviors - wandering off, aggression, repetition, confusion, ect.
- Coping - caregiver stress tests, depression, grief, ect
- Resources - help line, online community, care training and classes, caregiver notebook, care finder, ect
As a caregiver, you don't have to go through this alone. There are people that are willing to help you.
If you are a member of a church, find a group that can help you along your journey as a caregiver of someone who has a terminal illness. Church groups are great for spiritual support, prayers, and can provide someone to talk to about your feelings.
I know that this is a sensitive subject that many people don't care to discuss. However, when someone is diagnosed with a terminal illness there are a few things that need to be taken care of early on so that the patient can voice his or her wishes to their caregiver or family members, so that their wishes can be carried out.
Living Will - If you don't currently have a living will, then you should have one drafted. You can do it yourself using Legal Zoom or you can hire an attorney to draft these documents for you. If you currently have a will, make sure that it is up to date.
DNR - If a loved one doesn't wish to be resuscitated; in the event that something were to happen and they become unconscious, the patient will need to have a do not resuscitate order written. This is a legal document or order that is given to a nursing home or hospital, so that the patient's wishes can be carried out.
Life Insurance - If you have life insurance policies, then you should ensure that the beneficiaries are current and up to date. Update the policies if they aren't up to date.
Retirement - Seek the advice of a financial adviser to determine if you will need to cash in the patient's retirement in order to pay for the patient's full time care that isn't covered by insurance or medicare.