Wednesday, February 10, 2010

When Mom forgets you called, don't take it personally

Mom is forgetting that I call her and I must tell myself over and over not to take it personally.  She's been at the nursing home for a week now and I've talked with her at least four times but she doesn't seem to remember.  I get the same questions:  "How did you know I was here? ......How did you get the phone number so quickly?......Who sent me here, the doctor? .... How long will I be here?"  I just answer and don't tell her that we discussed it the day before or that we've discussed it three times before.

Intellectually, I know I should not take this personally but it's my MOM and it's hurtful that she doesn't remember talking with me.  It also concerns me very much since I worry that her memory will only get worse.   I think she's not remembered our talks for some months now but I didn't want to admit it to myself.  She would seem pleasantly surprised when she heard my voice on the phone and each conversation would be just the same.  For a while I told myself it's because she didn't have much to talk about but the hard truth is that she doesn't remember. 

She DOES remember visits.  My cousin saw her last week and brought flowers, she's told me about it each time we talk.   I'll just have to get there so she remembers seeing me.  That should make both of us feel better.   I remember my Mom's reaction when her own mother failed to recognize her.  Grandma thought my Mom was her sister, Alvina.  She asked about the kids and who was caring for them.  The "kids" were my Mom and her brother.  Grandma thought she was hospitalized after surgery and looked forward to returning home to her husband and kids.   My Mom was hurt that her own mother didn't recognize her but took heart that she was eager to return to her home, her kids, her daughter.  Now I have to do the same and realize that Mom is happy when I call even though it's bitter sweet for me. 

Monday, February 8, 2010

Epilepsy in the elderly, subtle symptoms hard to spot

My Mom has epilepsy and this complicates her care.  She is fortunate that her epilepsy has been easily controlled with one type of medication; others are not so fortunate.   In the big scheme of things Mom has had few grand mal seizures but when she does it's a doozy. Her blood pressure shoots way up and the risk of stroke is huge.  She didn't always have epilepsy; her condition is the result of brain damage after a stroke during childbirth at age 42.   Her grand mal seizures present the same symptoms she had during the stroke:  terrible headache, vomiting, left side numbness followed by paralysis and finally unconsciousness.  As she ages we have two main concerns; one is a regular schedule of medication to maintain an adequate level of dilantin in her blood stream and, secondly, we want to ensure that she's closely monitored for changes in her seizure process.  

I use the word "process" because it seems that her seizures have always followed the same pattern.  If we ( my dad, brother or myself ) could intervene early enough in the process, we could prevent the seizure.  She might still have a headache, some "wavering" in her voice, some disorientation but no grand mal seizure.  We generally gave her another pill, perhaps something sweet to eat, a drink of water, some TLC and rest. She would most often be just fine. Now that Mom's cared for my others, there is a chance they won't recognize the subtle signs of an oncoming seizure.  If her seizures become less violent and more frequent, we want to know that someone is aware of the change.   At home, we quickly noticed Mom's slight disorientation, her failure to respond quickly to questions or discussion, the dazed look in her eyes.  All of these now seem like typical "old age" to someone unacquainted with Mom.   She also realizes something is wrong and would tell us early that she didn't "feel right". My great fear is that her request will be attributed to a "lonely old lady" and she'll be ignored. 

On a few occassions in the past 5 years I've noticed more subtle seizures.  Mom would look dazed and bob her head up and down yet still be able to hear and talk.  When asked a question she would try to focus her vision on me but could not; she just seemed "out of it" and her grip on her left hand would be very week.  I'd try to get her to eat something sweet, have a drink of water and a rest.   Usually after 40-60 minutes of sleep she'd wake up and not remember our discussion or that she had a snack.    The frustrating part about this change in her seizure activity is that we can't easily make care givers aware of these symptoms unless we are there as it happens.  There's also high turnover in aides and some times nurses, so we have to repeat this over and over.   Lucky for Mom, I'm tenacious.  I will tell them over and over.  I ignore the eye rolling, the smart ass remarks and tell them, how serious this is for Mom.  It's a matter of life or death for her so I expect them to do their best.  I don't expect miracles but I do expect them to respond to her requests and her symptoms.

Move from ALF complicated even with lots of calls...

Moving Mom into assisted living took a lot of work, I don't know why I expected her moving out to be less stressful.   All-in-all, it went fine but I still had a few frustrating moments.   Given that I had to coordinate things from a distance, things went pretty well.   People WANT to be helpful in situations like this and, since it's a small town and I know people, no one tried to take advantage. 

My sister in law was really good about going to Mom's apartment for clothes, shoes and a few personal items that Mom would need immediately.  She also packed up a few precious things like photo albums, pictures and an antique quilt and put them in storage at Mom's.  All of us, Mom especially, would feel bad if these were not well cared for.  I contacted a moving company to pack up the simple furniture,  appliances and other belongings. They had it packed in an hour and spent another hour loading up and storing it in the garage at Mom's house.  It was easy enough, until the ALF called about a table left in the apartment.  

The table became a bone of contention; the ALF Executive Director called to tell me the movers left it.  The movers said the Marketing Director told them it was ALF property.  The Marketing Director told me my brothers said it was ALF property.  My brothers told me the ALF maintenance man said it was ALF property...   That's 5 calls already all over a cheapie table!  I probably spent more in long-distance calls than I did on the table.    Long story short, I told the ALF Director that I had receipts for it and that someone would get it; she ended up having their van driver take it to Moms - another advantage of a small town -it was not far nor time consuming to do this.    But!  the frustration it caused was maddening - people don't like to be given in accurate information and everyone felt bad over one piece of furniture.  

I think things like this could be avoided if the ALF had better move-in and move-out procedures.    They are very eager to promise a lot of help and organization before move-in but their follow through seems lame.  It's not because they are bad people, it's simply because they have too many residents and not enough staff.   Looking back, I would keep a detailed inventory of everything moved into Mom's apartment, anything I added over time and anything broken or removed and WHO removed it.  (As I write this I'm wondering about pictures on the walls, towels - anything I purchased that my family didn't know about; they might have told the ALF it's not Mom's because they didn't know or didn't recognize it.)  I would provide a copy of this inventory to the ALF for Mom's file, to family members and to the movers.  I'd also try to keep it updated when family members bring items or take things home.  This is an easy way to ensure that all of Mom's belongings don't get left and the ALF staff doesn't get blamed for something outside their control.