What's wrong with Grandma?
Thu Jan 25, 2007 at 10:14:52 AM PDT
Like many of you, I've spent quite of bit of time reading nyceve's remarkable health care diaries. I've been wanting for quite some time to write about this issue that has been affecting my own family so terribly, but I could never find the time or the energy. And I never could really decide whether it was an appropriate subject for a dKos diary. And it's much more than just a health care issue. So, today I decided to take the time and just do it. You all can determine whether it's appropriate or not. It's probably going to be a long diary and I hope you will forgive that.
My Grandmother's name is Helen. She's 85 years old. We (her family) think she has Alzheimer's disease or an Alzheimer's related condition but the truth is we just don't know. And it's been damned difficult finding answers.
More below the jump....
My Grandma was always healthy, both physically and mentally. She was the proverbial ox, and this good health is apparently a genetic thing that has blessed the family for generations. We're all a bunch of German workhorses. But things started to go wrong with Grandma.
10 years ago my Grandmother went to her gynecologist for an annual exam. The doctor asked her about her general health. It was wintertime and she was feeling a mild depression because of the continued dreary weather and the fact that she couldn't spend time outdoors as she wanted. My grandma owns a working farm and her life was all about the great outdoors. The gynocologist gave her samples of Wellbutrin.
As far as we were able to determine, she took the medication as instructed. 4 days later she went to the local mom and pop grocery store to do her weekly shopping. The cashiers, who all knew my Granny by name, were concerned by her behavior and alerted the store manager. Grandma, who was by then obviously disoriented, abandoned the cart in the store and walked outside. The store manager followed her, thank the Goddess, or chances are Grandma might have gotten in the car and tried to drive. When the manager stopped her and asked if she was OK, she put her hands to the sides of her head, cried out, and collapsed in the parking lot. She was taken by ambulance to the nearest ER. For several hours (it felt like forever) she had many similar episodes. After seeing a neurologist and going through a gazillion tests it was determined that she was experiencing grand mal (tonic-clonic) seizures.
At about this time our family divided into two 'factions'. There are some who are the 'questioners' and the rest are the 'accepters'. It sounds weird, doesn't it, to put one's extended family into categories? But that's the way it was and that's the way it stayed. The accepters didn't question the diagnosis at all. Seizures? OK then, do what you can to fix it and make it better. The questioners wanted to know why in hell a 75 year old woman who never was never ill would suddenly begin having grand mal seizures after taking Wellbutrin for a few days. It seemed too much of a coincidence.
We never got an answer. Not from anyone in the medical community. Maybe they didn't know. Maybe they didn't want to say. Were they afraid we'd try to sue the gynocologist? Maybe. I don't know.
So the decline begins here. She was released from the hospital and returned home after a few days at my Mom's house. The doctors (her primary care physician and the neurologist) had a difficult time finding the right medications and dosages. She had less frequent seizures during this time. She lived alone and would have a seizure, sometimes falling down and causing herself injury. Once she fell and broke her hip. She spent about 40 days in the hospital that time as she had to have a hip replacement and after-care. Still she wanted to live on her own at the farm. The doctors thought it was ok, and my Mom convinced Grandma to get a Lifeline Medical Alert system with a panic button worn around her neck just in case something happened.
The doctors finally settled on Phenobarbitol as the medication of choice. She was to take 3 pills a day but I cannot recall how she was to take the pills or the strength of each pill. We assume it was the drug that had very bad effects on my Grandma but again we don't know. This once vibrant woman who baled her own hay until she was 70 just stopped living her life. She would sleep until noon, stay in her nightgown all day and watch TV in her recliner. We tried to get her engaged in other activities but were unable to do so. So we tried to get help from her primary care physician but nothing could convince him to get actively involved. My mother and uncles met with him to ask for assistance on several occasions. He would tell them to bring my Grandma into the office, which they did. He would ask Grandma how she was doing and she'd say "fine". He'd ask her a couple of questions about what year it was and that sort of thing and that was the end of the visit. We tried to do an end run around the doctor by contacting the neurologist but he could/would not get involved without a referral that the primary care physician would not give. We tried to seek help from a physician outside the Health Plan network that my Grandma was enrolled in but my Grandma refused because she didn't want to pay for it out of pocket.
This situation lasted for more than 8 years. The accepters in the family were convinced that the doctor would act if there was something wrong with Grandma. The questioners in the family, of which I am one, just kept questioning and worrying. Grandma's decline was slow and steady. She stopped driving which was a blessing because we were terrified she'd have an accident and hurt someone. She sold the farm except for the one acre where her house stood. Her behavior at times was almost childlike. She began hoarding things, any things, in her home. Newspapers piled in two stacks almost to the ceiling. She stopped cleaning the house. She stopped bathing regularly. She stopped cooking anything that required more than a microwave oven. She began relying on family members to run errands for her, such as grocery shopping and the like. She did not leave her home unless it was dire necessity, not even for family holidays
Then we noticed she couldn't balance her checkbook anymore. She couldn't keep track of utility bills. Some utilities wouldn't be paid at all and some she would pay over and over again, sometimes paying the amount of a credit balance shown on the next statement. My Grandmother grudgingly gave my mother power of attorney over her financial affairs and my Mom straightened out the mess and took over that end of things. All the while, every single time she had a doctor's appointment, we would beg for help from the doctor, always outside my Grandmother's hearing. You see, she got upset when we mentioned these things to other people. She thought we were being mean or wanted her "locked away in a home". There was never any help, never any diagnosis or real examination beyond those simple physical checkups. As horrible as it sounds, some of us watched and waited for something bad to happen. And it did.
My Grandmother called the doctor last November and told him she wanted to get off "that dope". She was referring to her Phenobarbitol medication. The primary care physician sent orders to the local hospital for blood work, and after the results came back he lowered the dosage to two pills per day instead of three. I don't know how it happened but the neurologist was notified by the hospital that there was a change in the prescription/dosage and called my grandmother and told her she had to take those 3 pills per day for the rest of her life. I do not know if the neurologist and the primary care physician communicated. Regardless, the primary care physician stood by his decision and my grandmother was permitted to reduce her dosage. And on Thanksgiving Day, less than a week after her dosage was lowered, she had a grand mal seizure at my uncle's home in the next county. This, strangely, was another blessing.
So now we had a whole new group of doctors, a different hospital, and the opportunity to finally, finally! speak to someone outside her Health Plan network. The family accepters, whom I do love dearly despite our differences in opinion, sat in the waiting room and waited for news. The questioners chased nurses and doctors around the hospital trying desperately to communicate our concerns and, oh please!, get an accurate diagnosis. And we did get it, well, sort of. The neurologist who saw her did some testing one day and announced Grandma might have "a touch of Alzheimer's". Oh Hallelujah! I still don't know for certain that it is actually Alzheimer's, but I hope and hope that they ruled out everything else.
So my Granny again spent several days in the hospital and her medication/dosage was returned to what it had been for years. She was also prescribed Aricept. The doctors released her from the hospital and she was transported to a small private nursing home for continued physical therapy. All those years of inactivity had taken its toll and Grandma's body was weak. The staff evaluated her weekly and when they decided she could make no more progress they discharged her per Medicare/Health Plan requirements. But, the physician stipulated that she absolutely could not go back to her residence alone because of its remote location, and the fact that he did not think she should try to walk up and down stairs anymore. But otherwise he felt she could still live alone for a time. So the family scrambled. Where were we to take her? Everyone lives in a home with stairs. I offered to take her to my home but the family decided against it because I have small children and Grandma doesn't deal well with all the noise. Plus, she just doesn't like people fondling her 'things' and my children are definitely fondlers. The rest of the family works odd hours or has an untypical lifestyle that Grandma might not be comfortable with. And any family members left, well, Grandma just didn't particularly like them or someone they lived with or were married to. So were we to leave her in the nursing home and pay with her money and property until it was all gone and then let Medicare pick up the bill? It didn't seem like a good choice.
With choices so limited, the family looked into Section 8 housing for the elderly that is available in my city. The apartments are small but very nice, there's 24 hour security, and a maintenance man any time one needs assistance. Plus, all those elderly ladies were so nice and so ready to welcome my Grandma into their community. We mentioned the apartment to Grandma and she seemed ready to go. But when we did finally move her in she told us all that she'd never forgive us for tricking her. It was a very difficult time for everyone.
And now Grandma's decline seems to be picking up steam. The past month or so has brought about remarkable and horribly sad changes. She never once has gone out of her apartment to meet the elderly ladies. She knows that I am related to her somehow but now she cannot remember exactly how it is so. When people mention my name she has an image of me as a child in her mind. She's beginning to forget a lot of things, people and things that have happened in her life. She thinks my Grandfather who died in 1984 is still alive and is just always at work.
She continues to live on her own but there is almost always someone else there. She's not able to take medications on her own so I go every day to make sure she takes her pills. I spend on average three hours a day with her, cleaning, cooking, coaxing her to eat something healthy, and just sitting in the same room while she watches TV.
As things are progressing now, I think Grandma will only have a few more months of independent living and then we will have to make the decision again where she should live. I don't look forward to that time. I spend most of my days feeling sad and angry. I'm sad that these things have come to pass and I feel angry because I wonder if we couldn't have done something different to diagnose what was wrong with her and at the very least slow down this process. I'm angry at the doctors. Intellectually I know that there's probably nothing that can change the outcome. Intellectually I know that I am the one suffering, not my grandmother. She doesn't know the difference anymore.
But still I'm angry, you know. Because I still don't know exactly what is wrong with Grandma. What caused these changes to her brain? Is it Alzheimer's disease or some other dementia? Did all those seizures wreck her brain? I don't know, and I don't think I ever will.
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