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Watching a Parent Who Has Pick's Disease Slowly Slip Away - Part 5

Updated on April 13, 2012

Mom's Favorite Camping Location

Frying Pan River Valley, Colorado was Mom's Favorite Place to go Camping.
Frying Pan River Valley, Colorado was Mom's Favorite Place to go Camping. | Source

My mom is still in a full time Alzhiemer's care facility. She has lived in the facility for almost 2 years now. Doctors estimated that she would live approximately 2 years once she was placed in a full time care facility. It seems as if mom has surpassed doctors estimates and for her condition she is doing fairly well.

In March of 2009, she started getting several eye infections. She has reverted back to being similar to a toddler, you know those toddlers who like to dig in their pants. All of this behavior is normal and they don't understand what they are doing. The doctors and nurses felt that digging in her undergarments was the cause of her infections. So they decided to place her in clothes so that she can no longer do this. Dresses or gown's are great for keeping them out of their undergarments.

She is no longer losing weight and is currently maintaining her current weight. This is good news for now. However, by August of 2009 the speech therapist who was monitoring my mom's ability to swallow foods and the therapist started to notice changes. She had to have an X-ray done of her throat but the x-ray didn't show any abnormalities. My mom now has to a nurse monitor her while she is eating her meals. The nurses have become concerned with my mom possibility aspirating her food, which can lead to lung infections or other problems if left untreated. My mom likes to store her food in her mouth like a chipmunk and sometimes refuses to swallow it. This is also posed a choking hazard.

She still loves to roam the halls of the nursing home. And loves to visit other people's rooms. She loves to find a place to look outside. When my dad would go to visit her he said that often times he would have to go looking for her. He would find her in other people's bed's. She seemed to be forgetting where her room was.

My mom still has a sense of humor, the nurses told my dad that one day while they were making up other residents beds that she would go right behind the staff and jump in the bed. She would mess up the covers and hide under them. She would pretend that she didn't hear the staff members talking to her and wouldn't answer them. They thought that maybe she was playing a game of hide and seek with them.

By October of 2009, she is having more trouble swallowing her food. She was switched to pureed food, similar to what a baby would have to eat. She is now having trouble swallowing Dr Pepper too (it's time to give up her favorite drink). The speech therapist recommended having another X-ray done of her throat because she has started losing weight again and showing more changes in her ability to swallow.

In December of 2009, she had to have a feeding tube placed in her stomach. After having her feeding tube a few days, my dad noticed that she was gaining her color back and looking a bit healthier since she can now get adequate nutrition again. She is up and walking the halls again and is much more alert.

How long should I expect someone to live with Pick's disease?

Pick's disease is a rare for of dementia that attacks the frontal lobe of the brain. It causes the brain to shrink, leaving patients with very little verbal skills and uncontrollable behaviors. This disease is very tough tiring both emotionally and physically.

The doctors gave my mom 5 years to live in 2005, when she was diagnosed with the Pick's disease. However, we don't fully know how long she had it but didn't exhibit many of the outward symptoms. She lived almost 6 years after she was diagnosed.

The average person can live anywhere from 5 to 12 years with the disease. The disease won't actually kill the patient directly; however, they will likely die from other causes such as organ failure or infections.

There are medications that they can take to help reduce some of their symptoms such as behavioral, depression, ect. Consult your doctor or health care provider to discuss what medications can help with their behavioral issues.

Pick's is pretty rare and only affects about 5% or less of all Alzheimer patients. It generally has an early onset and most patients that are diagnosed are in their 40's to 50's. It seems to affect a greater percentage of women and it is thought that heredity plays a role in this disease.

Finding a Hospice Care

At this point, the caregiver should begin researching hospice care companies. They will be helpful in the future and it's always a good idea to be prepared so that you don't have to make a last minute decisions.

What is Hospice Care?

Hospice care is for patients who are terminally ill. They assist the family in deciding what the appropriate medical care for their illness is, they help keep the patient comfortable, and provide support to the family.

The hospice care company that you choose will admit you, similar to a hospital. The patient will have to meet certain criteria in order to be admitted. The nurses will come to where the patient is whether it is the hospital, nursing home, or your own home. Once admitted, the nurses will help keep the patient as comfortable as possible, they can administer pain medications, check vitals, and keep a status on the patients condition. The nurse's are there to assist the family members with decisions regarding their care. They also work closely with the patient's physician.

Is Hospice Care Expensive?

Hospice care is often times covered by your medical insurance plans, including Medicare. Often times, the services are covered at 100% depending on your insurance policy (Note: You should check with your health insurance provider to find out the exact details on hospice care for your policy).


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      Kristi 2 years ago

      My mother has it and is at the end stages its been terrible before she got real bad she told me she wished she had cancer more dignified way to go. I feel for anyone going through this it a hard journey.

    • BEAUTYBABE profile image



      It's Pam here and I was very impressed with this

    • breastpumpreviews profile image

      Christy Garrett 5 years ago from TX

      Thank you. I really hope her story can help other caregivers.

    • Jaggedfrost profile image

      Jaggedfrost 5 years ago

      This was very hard to read. It is very well written though. I am sorry for your continuing loss. I wish you and yours the best.