Dementia's Rocky Road

Dementia
The term dementia is short for Senile Dementia. This is my father's current diagnosis. Although dementia can progress into Alzheimer’s in the later stages, dementia has also been known to hang around for quite awhile.

Reality
The reality of Senile Dementia is that although the most recognized symptom is memory loss or confusion there are other more intimidating symptoms. These symptoms can be anger, frustration, verbal abuse, and violence. Senile dementia is defined as a disease caused by degeneration of the brain cells. It is different from normal senility in the elderly in that the patient's brain function will gradually deteriorate resulting in progressive loss of memory and metal abilities, and noticeable personality changes.

My World
My father is now in the nursing home for the continued therapy and healing of a broken hip. He is healing well from the fracture and has progressed to therapy using a walker. His diet and COPD are stable. However, his dementia has progressed to the "nasty" part. He is verbally abusive, demands to be taken home, threatens to walk out of the nursing home, threatens to shoot himself in the head and end it all, swears at everyone, throws things, and refuses to take his medications. He often slaps the pills from the nursing staffs hands and throws his drink, usually coffee, across the room.

Doctor Ben
We have been blessed with an excellent physician whom we refer to as Dr. Ben. He was made aware of the change in Dad's behavior and his take was simply, "So Dad won't take his chill pill, eh?" This pretty much summed it up. He assured me that dementia treatment is as individual as each patient. There is no magic pill to make them behave or to bring back the person they used to be. The most you can hope for is to stabilize them and make their life more comfortable. He is trying another medication on my dad to see if it will help. But if he throws it across the room it may be hard to tell!

Family Perspective
At Thanksgiving I told my sisters it would be a nice surprise to visit Dad and Mom in January. Dad turns 80 on the 15th and Mom 78 on Feb. 8. They are both planning to visit and possibly bring some of their kids (now all adults). But, with this newest development, I believe I will ask them all to wait. It would be very hard for them to hear him rant about his care, his environment, and killing himself. I would hate for them and their children’s memories of Dad/Grandpa to be those. Explaining this to them is the hardest part of my role as caregiver. My son wants me to fix him, my sister wants me to remember him, and my Mom can't decide which behavior is really Dad. It is hard to make others understand, that the brain that was my father, is slowly disintegrating and that those parts that were his personality may be gone forever.

My View
One day at a time. I accept what is going on with Dad and accept the fact that I will be the bad guy in my role as his healthcare Power of Attorney. He knows it's my name on the paperwork that keeps him in the nursing home. But when I see the great care and patience they have for him and the improvement in my Mom's health since she has relinquished her role as caregiver, I know I'm doing the right thing. I don't know why, but when I visit, he listens to me and will behave. But I'm under no illusion, I know as soon as I leave, he is back at it. The best I can do is to make him take his medications while I'm there and give the nurses at least a dosage worth of peace.

Why Me?
I truly believe that God has a reason for everything that happens in our lives, good and bad; he uses them to prepare us for the future. I believe He has been preparing me for this role for many years. Now the patience and understanding I've developed will be tested to the utmost. I will manage, I have a loving supportive family, and daily I check in with the "Boss" for guidance and direction in all my decisions. Some days are harder than others, but then again, some days are better!

Caregiver Needs: Sometimes the one who isn't sick needs our care too.

Who takes care of the Caregiver?
My Mom who has been the 24/7 caregiver for my Dad over the last 6 years has found NOT caring for him quite difficult. Let me begin at the beginning.

Medical Power of Attorney
When we filled out the papers for Medical Power of Attorney (MPA) for my dad, we thought we were just covering our bases, just in case Mom wasn't able to make decisions. What we found when my dad was admitted to the hospital this last time, was that because he was no longer competent, the MPA was enacted automatically. We made sure this document was in my father's medical records and when 3 doctors determined he could not understand what he was being told they documented their findings and I became the MPA. At first this offended my mother greatly. Then we sat down and talked about it and because she is hard of hearing she agreed that she didn't always understand what the doctor's were saying.

Interesting result of this happening was that after about two days, my mom started to be less stressed. Her focus turned to taking treats to the hospital and making sure dad was comfortable. She totally turned all medical concerns over to me and I think secretly she was greatly relieved. I think when they told her he could die during surgery, and we had to decide whether he should have the surgery or live with a broken hip, it became too much for her. Knowing what you decide can end someone you loves life is a huge burden. I'm only glad I'm able to relieve her of that burden. I thank God for the support and love of all my family which makes my shoulder broad enough and strong enough to manage it.

Nursing Home Paradox
What surprised me the most about placing Dad in the nursing home wasn't how he adjusted, but rather, how Mom adjusted? She went to the nursing home daily. Most trips were justified by bringing back his laundry to wash. But the truth was she didn't know what to do without him home to care for, so she just cared for him long-distance. When I spoke to her about going less frequently she started to cry. She admitted she didn't know what to do without him there to care for each day. Her days were built around his routine of getting up, taking medications, fixing him meals, ect. Not only was Dad transitioning to a new way of life so was Mom.

Backlash
I'd like to say that all the doting Mom did and the time she spent at the nursing home was a great help to my Dad's adjustment. Unfortunately, it had just the opposite effect. The more she visited, the less he adapted and the more she did, the more he demanded. He resisted participating in any activities or making any friends. He was always waiting for her to arrive. He demanded to go home, refused to do his therapy, and complained A LOT.

Please, understand, my Dad is usually a great patient, polite and grateful for everything the nursing staff does. The nurses and I had a little talk and then I had a little (or should I say several) talks with my Mom. It took her about two weeks to cut her visits down to every-other-day. But now she has a routine and so does Dad.

Bonus
The bonus...Mom found out she isn't as tired. She has started cooking, anyone want some soup, 'cause I'm getting souped up! She has taken the time to make appointments with her doctor for a check-up and to get her eyes examined. She is taking time to take care of herself.
Dad on the other hand has friends at the nursing home, proudly bragged about how good he is doing in therapy and just won a prize playing BINGO!

Reader Response Session

Dear Readers
I thought I'd respond to many of the questions I've received since the inception of this blog. I want to thank everyone who has responded and I hope the information I've tried to provide will prove helpful to some of you. There have been numerous questions that I would like to address this week.

Medications?
The main medication on the market today for dementia/Alzeheimer's is Aricept. The site link provides various information regarding this medication and it's side effects. The most common side-effects seem to be stomach upset, nausea, vomiting and disruption of sleep. Aricept is for the majority of users well tolerated.

My Dad has a bit of a sour stomach and he tends to burp multiple times after eating which can be in part due to the medication. However, it can also be attributed to the hardened protion of his lungs which interfer with his stomachs natural expansion when filled with food. We made this connection when we realised that his shortness of breath attacks were usually associated with his recent ingestion of a meal. This can also be attributed to his use of Prednisone.

Prednisone is used in the treatment of Emphysima and the resulting Chronic Obstructive Pulmonary Disease (COPD). It can also be an effective treatment for chronic bronchitis and asthma suffers. While the drug is widely prescribed for these illnesses it is not without consequence. Prednisone is a steroid, which while easing the ability to breath and reducing chronic coughing, can also increase restlessnes/sleeplessness, increase appetite, and indigestion.
Less common are changes in skin color (darkening or lightening), dizziness, flushing of face/cheeks, hiccups, and increased sweating. More information is available on the web with information on drug interactions, side effects, and benefits.

Alzheimer's: If my Dad has it, will I get it?

The Bright Side

While visiting Dad today, he bragged to the nurse, "This is my daughter." The nurse said she thought so, as I had his eyes. Dad's reply surprised me and made me smile. He said, "She has my eyes?" Then looking at me, he said with a twinkle in his eyes, "It makes it hard for me to see if you have my eyes!" We all got a laugh out of that.

Dad's memory and recognition of those near to him slips further away each day. But the amazing thing is that it is being augmented by a childlike sense of humor. One thing you should know, throughout my life, I've never known my dad to have a sense of humor. He was always very much the English/Irish stiff-upper-lip type. This new development has taken us (my Mom and myself) completely by surprise. Mom keeps muttering, whenever I comment on it, "I keep telling you he never had a sense of humor!" She is quite baffled, I on the other hand, am quite pleased with this development.

Who are its victims?
The generation Alzheimers is currently affecting are the parents of the "baby boomers". Their goals in life were to raise a family and support them well. Most are not college educated or professional in their careers. They thought if they had a little savings in the bank and their homes paid for when they retired they would be doing fine. Mention depression to them and they will tell you about the 1920's. This mysterious illness is the plague for which they are not prepared. It slips up on you without your knowledge and robs you of your present while clouding your past until it is unregonizable.

What is the current treatment for patients?
Many of those diagnosed are being treated with new medications thought to slow the progression of the disease, and if nothing else, buy them time. Aricept is a common drug used fro treatment and the one being used on Dad. He has been taking it for the last 6 years and his dosage was recently increased. Another new drug is Ebixa, I don't know much about it, that's my current project to find out more. Unfortunatley, those who experience the early signs of confusion, forgetfullness and disorientation, will often ignore these signals for fear of the diagnosis. It is often up to loved ones to recognize the signs and encourage diagnosis and treatement.

What is the current treatment for caregivers?
We talk a lot to each other. There are support web sites where those in this role can gain input from others who have and are dealing with similar issues and questions. Sometimes just knowing you are not alone in this journey can help.

Will I get it?
Final answer: Unknown. Progress in research,treatment, and the causes of Alzheimers is ongoing. So far, all they know, is that they don't know. This disease is stealthy in its approach and on-set. I can only hope that for me or my children the continued research will result in an effective treatment and a cure will be found.