memory, orientation (of time, place and people), shortened attention span, not being able to concentrate, the ability to use language, judgement, insight, logic, perception, difficulty in learning new things and the ability to calculate.
People with dementia may experience lack of initiative, restlessness, sleep disturbances or changes in sleep patterns, personal hygiene, grooming and dress may begin to suffer and some patients even hoard objects which they often forget where they hide them. There are various diseases that can cause dementia and it usually gets progressively worse with time.
Then that all changed.
My mother began her journey with dementia back in 1994. At this time we had no idea what was wrong with her but we knew it was something. She became very confused and forgetful. We found that she was forgetting to take her pills or was taking double doses since she forgot she took them already. Her checkbook was totally messed up since she'd write checks and then never subtract them. She also began ordering food every night instead of cooking. To this day, I don't know why she did this but I believe she might of forgot how to cook. Needless to say, since I only worked till 1:00pm I took over the task of given her medication, cooking for the family, and the banking. By the following year more noticeable changes occurred with her physical appearance and her personal hygiene began to suffer and she began to walk with a gait. My sister and I began to take care of her baths and helped her in daily activities. Her doctor never seemed concerned with these symptoms. By 1996 when my father passed away my older sister brought my mother to every doctor imaginable to find out what was going on. They finally diagnosed her with dementia. Her dementia was caused by multi-infarct to the cerebral cortex which is multiple mini strokes to the part of the brain that controls behavioral actions and general movement. The mini strokes were due to her hypertension. They were so often that they couldn't tell how many she actually had. It all started to make sense. All the symptoms listed above had affected her in some way. The doctors said, she could not be left alone and they wanted her in a nursing home. That's when I told my brothers and sisters that I would quit my job to care for her before I'd put her in a nursing home. From that day on I've been her full-time caregiver. Slowly but surely her symptoms progressively got worse. She had alot of problems walking and her gait became baby steps. She was always afraid of falling so my sister and I would assist her whenever she walked anywhere in the house. Outside the house we used a wheelchair. Then on New Years Eve of 1997 while trying to get her to bed my mother fell and was taking to the hospital. They did all kinds of test and found nothing broken or bruised. The hospital discharged her Jan.8, 1997 saying she was fine but forgot to tell me that while she was there she was never checked to see if she could walk. During her 8 day stay she forgot how to walk and was released with no assistance from them. They said they'd send a nurse and physical therapist to the house. Meanwhile, I had to physically lift my mother (whom was 230lbs) to get her home. The nurse came the following day to check my mother. Once again I was told to put her in a nursing home and I refused. I had to physically lift my mother until Jan 17,1997 when they finally got me a hoyer lift and a hospital bed. Physical Therapy came but could not help her so by the end of February they decided to send her to a rehab center 3x a week. She went to rehab until April when they realized her stomach was destended and sent her to the hospital. The doctors believed she had a blockage so they did emergency surgery. They found no blockage but had to do a colostomy because her brain would not communicate with her bowels. She was already incontinent and here's one more thing the dementia took over. She was in intensive care for a week and spent 3 weeks in the hospital. When she was discharged once again I was asked about a nursing home. We had a nurse and aide come in for a short time after that but once they realized I knew what I was doing they'd sign her off and stop coming. Then by December 1997 Mom was back in the hospital for a short period of time for another stroke. By this time, I decided it was time to find another doctor since he would not do a thing to help her. I hated taking her to her doctors appointments because it was a waste of time and money. I'd have to hire an ambulette to take her round trip to his office where he would basically discard her and his whole office would be on my case about putting her in a home. Finally, by 1998 I found just house calls. They are doctors that come to you. The doctor was the first doctor I felt really cared for my mother. He did many test right here in the home and found she was not getting enough oxygen to the brain so she was put on oxygen, he changed her medication to get her hypertension stable and her diabetes in check and ordered a special mattress for her bed to cut down on bed sores. I discussed getting aricept to help her but it was to late for that. As time went by her memory and motor skills deteriated but all and all she was doing okay. Then by 1999, she had major decubitus ulcers (bed sores) and circulation to the area was very poor. I was told by a nurse and another doctor in February to get her affairs in order because they didn't believe the wounds would heal and she would never survive surgery. My sister insisted on getting a second opinion from a vascular surgeon and he believed there was enough circulation that with time and care they should heal. The doctor from just house calls now took over her care completely. He came in 3 to 4 times a month to check the wounds and to give me direction. It took us months to get these wounds to heal. We were down to two wounds by Oct.1999 when the doctor took a culture and found one to be an MRSA (Methicillin-resistant Staph Aureus) which is resistant to antibiotics. She needed to be put in the hospital for that one since MRSA strands are usually combated with a serious of different antibiotics. She was in the hospital for 10 days and then I suddenly had six wounds to tend with. It seems with every wound we'd get cleared up a new one would develop. Now, we are in the year 2000 and Mom has lost a tremendous amount of weight, she can only eat stage 2 baby food with a syringe, she chokes quite often, she has lost her motor skills and she no longer speaks to me(but once in a blue moon she'll say hi to my sister.) She listens intently to what you say to her and every night I sing her "You Are My Sunshine" since it seems to relax her. Once again I am dealing with three major bedsores which are stage 3 and 3 minor ones--they just never end. I'm happy to say, I now have two caring doctors from just house calls to help me care for her. Our biggest concern besides the wounds are malnutrition and dehydration. The doctor's keep a close check on that and when the time comes we will have to get a feeding tube. Each day we have the same routine since dementia patients respond better to routine. At this point, I couldn't tell you how my mothers feeling, but I read her facial expressions so I can tell if she's in pain, upset or happy. I try everyday to get her to talk by at least answering yes or no but I have no luck so alot of what I do is guess work. My job is tough but I would never change my decision to care for her, I consider these 4 and a half years to be a gift. I know she loves me and that there is an unspoken special bond between us. She has taught me many valuable lessons in these years. She has given me so much --- including faith, hope , love and strength. I cherish everyday with her.
It does get unbearably overwhelming at times with all the extra work between caring for my mother, two kids (daycare), all the housecleaning, caring and cleaning up after a dozen and a 1/2 pets, doing all the outside landscaping and doing the banking to name a few. I'm surprised I have not snapped yet and that I'm still sane but that's when I thank god for the support of my friends.
September 2000 Mom was in the hospital again.
So here's a special note: Thank You to all of you that work alongside of Just House calls and a very special thanks to Dr. S.M, Dr. F.A. and there receptionist Ada. I really appreciate all you've done.
