We’re back on our boat, “Sailfisher”.  During our long absence, back in the states I did my regular tour of “Mom Duty”; 95 next month, and she’s more full of (as my Dad used to say) “piss and vinegar” now than ever.  There’s not any down time with Mom, she keeps you running all the time.  I’ve learned that it’s common for folks with dementia to revert to who they used to be and what they used to do.  My mother, as a young woman, took a boat from Puerto Rico to New York to seek her future; she was soon joined by a few of her younger sisters.  The sisters all worked as seamstresses in factories in Manhattan, that now are high priced lofts, but that’s another story.  Anyway on the weekends they would get dressed up to go out dancing, as a matter of fact, that is where she met my Dad.  Nowadays, my Mom always says she wants to go dancing, or have a dance party at her house.  My brother did have a party for her last year; she got all dressed up and was out on the dance floor.  Whenever we shop for shoes, she refuses to consider flats; she says that they aren’t good for dancing.  I think in her mind, she is a young woman and having said that, sometimes her mind wants to do what her body can still manage to do, but for just a dance or two.

DANCING WITH THE STARS

TODAY IS DAY 5 of my current stint of caring for my mother.  Today I had to drive my brother around so we took my Mom to the day care center.  I haven’t left her there before, though I put these arrangements into place originally.  The last time I was here in August, just the mere driving into the parking lot brought on a temper tantrum, with her accusing me of wanting to take her out of her home.  Anyway,…getting back to today my brother told my Mom we had to go to court and she would not be allowed into the court house because she doesn’t have proper ID.  That only half worked, we also told her that the center had called to let us know that there was going to be dancing today.  That did the trick, she got busy getting ready to go, she didn’t want to wear the outfit I had laid out, she wanted to wear a dress.  I added a necklace, rhinestone earrings, a bracelet and topped off her look with her favorite perfume, then we were out the door.  Once we got there, she didn’t hesitate at all, she just walked right in.  Later when I picked her up I asked her how the dance was, she said it really wasn’t a party or anything great but the folks, at the center, said she did some dancing and had a good time.

SUNDOWNERS AND DIVALPROEX TO THE RESCUE

I’M BACK in Florida taking care of Mom again.  Its day four and things haven’t settled into, let’s say, “A rhythm” yet but I’m hoping things improve soon.  Added to the mix this time is that I now have to be my brother’s driver because his diabetes has caused some loss of vision.  We spent most of the afternoon at the specialist’s office, an injection in the eye to bring down some inflammation and another appointment next week may bring some improvement, at least I hope so.

Just like clock work, around 5 o’clock my Mom started to get agitated, demanding and generally a pain in the neck,…yep, the dreaded “sun downer syndrome was kicking in, but Ta Dah,…I had one of her Divalproex in my bag to give to her and within 20 minutes she began to settle right down…thank you Dr. Allen.  The cliche “better living with pharmaceuticals” is really true when it comes to dementia patients and the quality of their lives and the lives of their care givers.

19 Scissors and Counting

Today I counted how many scissors and nail clippers my mother has, so far I've found 19 pairs of scissors and 9 nail clippers. 

One common symptom dementia patients exhibit is thinking that someone is stealing from them; my mother hides things to prevent them from getting stolen.  Once she hides things, she forgets she's done it, then when she can't find something she thinks someone has stolen it all over again.  She then sees similar items at my sister's and brother's respective homes and she just packs the item into her purse or suitcase.  It's really a never ending cycle; hence the 19 pairs of scissors.

Now on the other hand, before dementia set in my mother did have some money go missing, so maybe part of this particular paranoia stems from what happened in the past, it's certainly something to think about. This is something that Lanny Butler discusses in his book about dementia, "My Past is Now My Future".

Great-great grandma's wisdom

This is what my Mom said yesterday, the day she became a great-great grandmother for the first time. She said that young women get involved with men, start tickling them without knowing what they’re playing with, and end up with a baby. 

I know I’ve said this before but it continues to be true; there’s still always a bit of wisdom in my mother’s observations. 

I GET HER...that's a bit scary!

This time I understand her thinking more. 

The other day I took Mom to the bank.  In the past I would get some money out and hold my mother’s money for her, as she usually hides it, later saying someone has stolen it. This time I gave her the envelope with the cash, though all day she would open her purse, get the envelope out and count the money, she never lost it.  I think a combination of being at her own home, being on the correct medication and the person she usually accuses of stealing from her is on vacation, accounts for the improvements.. 

In general, this time, she is calmer.  I understand more of the way she thinks; many things she does actually relate to things from the past; there’s always a bit of truth to most of her ramblings.

Yesterday she said, “I am you and you are me”.

August In Florida....Are You Kidding???

I'M BACK

It’s August in Florida with hot steamy temps everyday, not the best time of the year to be here but I am.  I’m taking over for the month while my brother and his family take a week long cruise in the Caribbean.  Every care giver needs time off and I hope they are enjoying their vacation. 

After taking a red eye out from LA, I arrived bleary eyed to my brother’s house only to find that my Mom wasn’t there.   My brother had told Mom, the night before that I was arriving in the morning (that was a mistake).  Soon after he left for the airport, Mom got up told my sister-in-law she wanted to go to her house to clean up; my sister-in-law went back to sleep (another mistake), after telling Mom to go back to bed.  So Mom, got dressed, packed a small backpack, grabbed her purse and a big pink umbrella and off she went, out the front door, past 2 sleeping teenagers.  We found her over a mile away, just walking down the road.  She was easy to spot, with her big pink umbrella she was the only little old lady walking down the road in the hot morning sun.  That was my first panic and there are always more in store.  Reading this you must think…there are a few things that could have been done differently:

1. Not tell her I was coming.
2. Take her along to the airport.
3. Once alerted that she wanted to go home, stay alert.
4. Equip the door with an alarm.
5. Have an ID bracelet on her

Those are all good and recommended ideas but it just doesn’t happen, people have limitations, some more than others, enough said.

At 94 my mother is still physically strong, determined and stubborn, combine that with a good dose of dementia and she can be exhausting.

Later in the day Mom was complaining that her leg was aching, I just smiled and thought I’m in for an interesting month.

   

Thanks to the Geriatric Psychiatrist

I'm back again taking care of my 93 year old mother, I've been here nearly 3 weeks. It's been a bit easier than the last few times because a few things have changed. She now sees a geriatric psychiatrist who has fine tuned her medications. My Mom used to take Aricept orally for her dementia which gave her stomach problems that resulted in frequent emergency room visits. Dr. Luis Allen, in Orlando, has given her the same medication in a patch; that's made such a big difference. She's eating better, no stomach issues and best of all I haven't seen the inside of the local emergency room. The other issue that made caring for her, in the past, very frustrating was that each evening she would get hyper; now I give her 1/2 of a Seroquel and she is calmer and she sleeps until 9 AM. I get to go to the gym at 6:30 and she's still asleep when I get back. These small changes have made such a difference. It's really important to get to the right doctor, who is very familiar with the issues of the elderly.

Oops Almost Forgot

Just wanted to let you know I've only cooked for the group once, so far so good.

ONE WEEK DOWN

I've been here a week; I think it's been the coldest week I've ever spent in Florida, with temps as low as 20 something a few nights in a row. The days have been pretty cold as well but that hasn't stopped us from bundling up and going out on our daily "out to lunch" and the never ending stocking up on food shopping. The car window being stuck half way down made it even more chilly in the car. I'm now driving my nephew's van until the window gets fixed....thank you Joe.
My Mom has been feeling pretty feisty since I've been here. She stepped up her game the other day; she wanted to go out shopping but we had just come home so I told her I didn't want to go out again, she then threatened would to walk to the store by herself. I told her to go ahead but added that if the police found her roaming around alone they would probably take her in and she would probably end up in the psyche ward. I know, you think that's terrible...but sometimes you just have to resort to whatever works. The idea is that I'm the one with more of my marbles and I have to be the one in control, not her.

Vacation's Over

I just got back last night, so now it's Mom duty for the next 2 months. I had a great month off, I think I only cooked twice all month. Made like a tourist in LA, did a road trip to Northern CA to see friends, did my annual Xmas cookie bake day and spent the holidays with my family...it was wonderful. I don't have any resolutions while I'm here because I really don't think I can keep them. I'll continue with my kickboxing routine and get caught up on my travel blog. I do hope to make some progress in making plans for Mom's future care and comfort. I also plan to get more time off, on a more regular basis, than last time...so we'll see. I had a talk with Mom this morning saying that I don't want to be cooking dinner for 6 or 7 people every night, I told her "I'm here to care for you and everyone else has to take care of themselves". She agreed but you know I'm in LaLa land if I believe that.
The temps in Florida went down to the 30's last night and have been for the last few; the house was 48 degrees inside when I got here. I think it would have been great if someone had thought to turn the heater on before I got here...but that's just me. So wish me luck...by the way I have my medication just in case the eczema comes back, and of course...HAPPY NEW YEAR.

Meds and Hiatus and Fun in California

I think I just gave out and couldn't even think about posting anything on this blog for a while. I'm back in California now, enjoying a bit of a hiatus from Mom care. I consider myself a strong person but caring for Mom did me in this time around. Mom is a tough job but one that has to be done, one way or another.
My thought is that she is basically out of control, and with some pharmaceutical assistance she could be happier, as well as easier to care for, thus making life better for everyone else involved. Yes, I know that sounds terrible and you are thinking..."what a horrible person"... but having a 92 year old controlling 3 families is much worse. We are working on getting her an appointment with a geriatric psychiatrist who could diagnose then prescribe just the right formula for her. I'm really hoping that she gets started before I go back January; actually I've threatened not to return if she isn't on meds...but that's probably just an empty threat but don't tell my family.
So many well meaning friends say, "you're so lucky to have her around still", yes I am but that doesn't make caring for her any easier. I barely can refrain from telling them, "You try it for a while buddy", but I keep those comments to myself.

Thanks for Thanksgiving

Thanksgiving came and went and we really didn't get too far with our plans but I did get 2 days off. My Mom just got back from my sister's and I feel a lot more relaxed now. After only a day or two with my Mom both my brother and sister seem to get just as stressed as I do.
Things are quiet right now; tomorrow I'm sure we'll be having lunch out and the cycle will start all over again, but I'll be better equipped to handle it, at least for a few days. I get to go back to California next week and I will enjoy the time off

Challenges

It's been a few days since I posted anything. My mother's early morning walk ended up affecting me more than I thought. Everything seemed to have a snowball affect on me until I had a total melt down, ending with driving my Mom to my brother's house and leaving her in their care until the next day. It is very difficult to keep in mind that all her behaviors have nothing to do with the person she used to be, but with all the disconnects and misfires of her brain.
All the said, it is hard to keep a good perspective.
As a caregiver you need to ask for some help, and have folks around you that can and will give that needed assistance. No one can do this alone. Baby boomers have challenges never faced before. Our parents are living longer than their parents did; therefore there is little experience to draw from.
As a family, we have not made plans for my mother's future, other than sharing the responsibility of caring for her. I hope to be able to take some time on Thanksgiving to discuss what may have to happen in the future. Everyone seems to be burning out because caring for my mother 24/7 is a task that cannot be done by one person alone. There are many options, elderly day care, assisted living, part-time assistance to name a few. All of the choices involve much research, decisions, financial considerations and a certain degree of guilt. I hope to share some of the info I have gathered, thus far, with my siblings and then begin to map out a plan we can all live with.

Early Morning Jog

Today I thought I would sleep in late and go jogging at about 7:30, rather than get up at 5:45 to go to the gym,...bad idea. On my way back I found my Mom walking down the road in search of me. Rather than be freaked out I will look at it as that she got some early morning exercise in as well. It's good I jog the same route and so does she.

A Recharge

Some days I'm just grumpy, I really don't know why...but I am; maybe I'm just stressed. Today it started early at 6 AM, my mother was up asking me where I was going. As usual I said I was on the way to the gym, she said I should wait till later. I just looked at her and told her to please go back to bed. When I got back from the gym, I was glad to see she was still asleep. Around 10:30 I called my sister asking her if she could come over. My sister is the good one, she heard the need in my voice. By noon, her and her husband came over to take us out to lunch.
Sometimes you just can't do it all by yourself. I think that is an important thing to remember when you're caring for your elderly parent.
Thank you my sister and brother-in-law. Lunch was wonderful, even if I broke my diet big time.

Mom is Acknowledged

Sunday my Mom's church acknowledged her for her many years of service, it was a big honor. She got up really early, took a bath and began looking through her clothes to pick just the right outfit. We dropped her off looking wonderful; her friends accompanied her to the event. I thought of going as well but the family was not invited (I'm not a member of her church). She told me all about it when I picked her up. She said it was held in a hall, dinner was served, her photos were displayed, there was cake and even some dancing. She said she danced with a married man but didn't remember who he was. Today she wore the necklace and earrings that were a gift from her church group. She had a great time.

Tomorrow will be Better

Today we had a good time during the day, my sister came over with her 2 year old grand daughter and we did some shopping at the local second hand shop. When my Mom stays with my sister she gets to play with the 2 year old, they have a very fun relationship; my mother speaks her best English with the little one. FYI my Mom has 7 grandchildren and 7 great grandchildren and one on the way
Later things got more difficult. My brother coming over always triggers a "frenzy" with my Mom, I just stayed in the bedroom and watched several rerun episodes of Gray's Anatomy, considering I used to not enjoy TV, that's a lot of reruns . 2 shots of Tequila later things don't look so bad; dinner was some comfort food, not good for my South Beach efforts. Tomorrow is another day.

Sooooo Good

I do all the cooking at my mother's, hence I have to make lots of Puerto Rican food. One of the things that I'm perfecting is my chicken soup which goes perfectly with tostones ( fried green plantains). I've got to tell you that it is my very very favorite food in the whole world, at least today it is. Of course, this menu doesn't do so much for my attempts at the South Beach Diet. I've lost 5 lbs; probably have found most of them again in the last few days. I just want to know where the hell is my will power.

Saturday Night Fever

Saturday my Mom was saying that if she only knew how to get to her sister's house, she would like to go there. It wasn't but 30 minutes later that the phone rings and it's her sister's daughter saying that her Mom wanted to talk with my Mom, talk about coincidence. I suggested that she give me directions and I'd drive the hour to have the sisters visit in person. So off we go. All the way there my Mom said we were lost and I was going in the wrong direction, she had me to a point of wanting to yank my hair out of my head. We finally got there and we had a good time...that is as good of a time as you could have with 3 over 90 year old folks. We left at dusk and again all the way back she said we were lost. Things got even more interesting when my sister-in-law called and invited us to a party with her co-workers. I had my brother on the cell giving me turn by turn instructions all the time my mother constantly complaining that we were lost. I was at that point almost losing my mind. My Mom even pulled her "I think I may get sick" card. I said, "if you want to throw up, I'll pull over", she said " no I don't need to throw up. She never really let up about being lost until I said that I could take her home, and I would go to the party alone (I was bluffing), if she would like Once at the party we ended up having a great time, Mom and I danced the night away and didn't get home until midnight. I really was grateful to my sister-in-law for insisting that we go to the party.
Once in the caregiver mode, I find myself being reluctant to change the routine but I am learning that the unexpected can be the most fun for me as well as Mom.