How it All Began

My mom is 84 years old. She is a retired nurse and has been a widow since 1979. She never even had a date after my dad died. In her past life she owned her own nursing home, worked as a nurse in many settings including post partum and new born nursery. She dearly loved those babies! When I had my last baby (30+ years ago), I delivered at the hospital my mom worked at and she was able to give my baby girl her first bath.

Over the years Ma developed severe arthritis - osteo, rheumatoid and psoriatic so she ended up retiring a bit early. She enjoyed some traveling with a friend and spent alot of time with my brothers family as well as my own.

I left our home in Syracuse New York to seek sun and sand in Myrtle Beach SC and Ma started visiting in the winters and as her mobility deteriorated she spent longer here during the winter. Things started getting a bit rough when she would go home. She experienced alot of falls and started getting confused about her medicines and quite paranoid at times about anyone trying to help her with those medications. When she was with us she started experiencing a serious decrease in her mobility and wasn't even able to transfer herself from the bed to the bedside commode.

Knee replacements had been discussed with her for years but she said she didn't want to have surgery. To make a long story short, I convinced her to see an orthopedic surgeon here and basically she realized she was either going to be bedbound or get new knees. In the summer of 2005 she had bilateral knee replacements.

During her recovery she had alot of hallucinations, both auditory and visual and would call from the hospital and rehab to tell me bizarre stories of things that were going on. One night it was that the room across the hall was hosting a "Black Muslim" wedding. I tried to make light of it and said " and they didn't even invite us!" She was very upset by it, said that people were running up and down the halls and she was scared and wanted me to come get her. The hospital she was in is probably one of the most quiet and peaceful hospitals I have ever been in. They only do orthopedics, the halls are carpeted and they don't do overhead paging so I saw it as a lovely place if you had to be in the hospital.

Another night she called and said I had to get her out of the crazy place right now! I asked what was going on ( I hadn't been gone from there 30 minutes) and she said a baby had been born and there was alot of crazy stuff going on. I said - " a baby was born up there on your floor?" She said " Yes, that's what I'm telling you!" I said " well where did the baby come from" She said " It's mother". I said, " I mean, they don't even deliver babies at that hospital". She said " I know it, that's why it's so crazy and I need to get out of here!".

I attributed all of this to the stress of the surgery and medications that they had her on and assumed it would pass. I am a nurse myself and have seen patients- including myself - act pretty bizarre due to these factors.

When she got to the rehab (we used that term instead of nursing home) she continued with some of the same types of tales. She also was very paranoid about medications that were given to her and at times appeared almost unconscious when they attempted to get her up to go to physical therapy etc.

During this time I spoke with a hospitalist about her progress and he said- kind of as an aside that she had dementia. I told him that since he had only just met her, that she was a 81 year old woman recovering from bilateral knee replacement, that I didn't think it was the time to be making such a diagnosis. He basically said I could accept it or not but that his guess was that she had organic brain syndrome and dementia, possibly exacerbated by many years on narcotic pain relievers and the recent stress of the surgery.

Looking back, of course I could see many of the signs of dementia that I had attributed to other causes.

Prior to her surgery it had pretty much been decided that she would be with us full time. We were having a house built at the time and designed her bedroom and bathroom to make it easier for her to manage with a motorized chair or walker.

I feel that she made a good recovery from the surgery. She was able to use her walker and sometimes a cane. She stayed alone during the day while I worked and operated my business. She did laundry and dishes and enjoyed feeling that she was helping.

During this time, more bizarre behaviors took place. One evening Ma and I sat down to eat supper and I got up from the table to get something and when I came back she had a mouthful of something and was chewing to beat the band. The food we were having didn't really require all that chewing so I thought it was strange. My mom always drinks hot tea and has a little tea bag holder that the tea bag goes on after she takes it out of the cup. The thought flashed across my mind wondering if she had the tea bag in her mouth. I looked down at the tea bag holder and it was empty. I said -"MA! Spit out what's in your mouth!" and held up a napkin. She spit out the teabag!! She never questioned why I had told her to spit out what was in her mouth which was really odd and when I told her she had been chewing on a tea bag she really just kind of shrugged and started eating her supper!!

After that I got her into her primary care physician (after sending him a note about some of these strange behaviors) and he did a MMSE (mini mental status exam) on her. I didn't think she did too bad, all things considered but he very calmly and gently told her that she had dementia and that the most common type was Alzheimer's disease and he believed that's what she had. He sat quietly for a few minutes and then asked her how she felt about what he had told her. She said she didn't like the sound of it and after we left there she never mentioned anything about it. I later took her to a neurologist whose conclusion was the same.

So, that was the beginning of the journey. My intention is to blog as therapy for myself in coping with the situation, share information that I have found helpful and record some of the hilarious, heartbreaking and hair raising things that happen around here. I welcome your visits! Feel free to comment and share your own experiences in caring for a loved one with this awful disease. We can all learn from each other.