Nov. 16, 2009
There is no real place to start. It is so hard to watch someone you love get forgetful, add in a big dose of confusion and disorientation, throw a heap of frustration into the mix and you have a small idea what Dementia is like. And by all means, let us not forget the chronic repetitive stories. I wish it were easier to show appropriate reactions on the 7th or 8th time I hear the same story. Bear in mind, the way this works...a story is told, and as soon as the punchline is delivered, a short pause for audience reaction, and we start over. Usually there is very little variation in the delivery of the story but I feel the need to react as if I have never heard it before. As time goes on you hit the next stage of dementia. Combativeness. It is like dealing with an angry 4 year old. They sometimes know they are misbehaving and don't care, they are willful and stubborn, they are determined to have their way at all costs. They are argumentative, demanding and down right mean at times. It's all about control.
Nov. 17, 2009
So much of the negative behavior is caused by their lack of control. Put yourself in those shoes for a moment. You can no longer drive, you take so many medications it boggles the mind, you are told what to eat, when to eat and how to eat. Someone has to hover over you because simply standing up can make you fall. You have occasional "accidents" that require the most intense breach of intimacy known to man because you require help to clean up. You are nagged to bathe (its the kid thing again). You want to be useful, productive but you just feel like you are in everybody's way. You are lost much of the time in a world deep inside yourself. You dwell heavily in the past. Those memories are sharp and clear, they are happy times when you controlled your life. You don't want to complain about anything but anger, resentment, pain, frustration and confusion build and build until you explode! Can you imagine it? I see all of this every day. My heart breaks watching it. I am on a journey with 2 people I dearly love.
We are learning to deal with this horrific illness together. There have been many tears shed already (and there will be MANY more). There are also MANY hugs and "I love yous" and "Thank yous" and shared smiles. For years I was intimidated by my in-laws. They were New Orleans society (Mardi Gras & debutante balls, etc). Definitely not my world. They rubbed elbows with the rich and well-connected. When I finally started to feel comfortable with them it was instantaneous (after 4 or 5 years of being married to their son, the baby of 5 kids). We have never looked back!
Mom is one of my best friend's and has been for almost 25 years. She is the gentler side of dementia. She putters around (legally deaf and in a wheelchair) lost most of the time in a world where she arranges & rearranges things. She is directly controlling her environment. At this moment she is arranging a circus on the dining room table. She is an artist so she clings to her creativity. Please note we will have multiple scenes there today alone.
Dad is in the argumentative stage. With him everything is a fight. He is snappy & surly one minute and contrite the next. He is bored out of his mind so I find chores for him to do that help me. It gives him a purpose (and the floors have never been cleaner). He loads and unloads the dishwasher, sets the table, sweeps, mops, etc. He wants desperately to be useful. It serves another purpose as well- it keeps him from hovering over "his bride", as he calls her. He spends most of his time worrying about her welfare. While this is amazingly sweet, it is also suffocating. He drives her crazy at times. He often says it's important to help her get stronger because he can't face the thought of her going 1st. She simply is his reason for living! The problem is so many of his behaviours tend to drain the life right out of her. I make it my job to run interference for her or find things to distract him. I am determined to improve the quality of life for them both. We are currently seeking a balance in our relationships.
Let's talk about meals. Routine is critical to Dad. He gets up every morning and weighs in, checks his blood pressure, writes it all down in the log then heads for the kitchen. 1. Microwave water for instant coffee. 2. Drop bread in the toaster (1 piece on so-so days, 2 on good days). 3. Fry 2 sausage patties. 4. Pour a bowl of cereal and slice half a banana on top. Add milk. 5. Pour a glass of orange juice or water. 6. Sit down and start throwing pills (11 of them) into his mouth and chewing them up. Meanwhile when Mom gets up we go through the same medical routine then linger over a cup of coffee while deciding what sounds good to her. Usually it's 1 egg, 1 strip of bacon and a muffin. Sometimes she will make herself a couple of pancakes. Breakfast is casual. If you are in the kitchen when I'm cooking you can place your request. If not, you're on your own. Lunch is served between 12 and 1. And if it isn't Dad fixes his own and pouts all afternoon because "it wasn't as good as I would have done it". Lol. Dinner is rather formal. It is served promptly at 6. It is a family affair so everyone must be in their place on time. It is a long drawn out dinner (usually full of the same stories you heard last night & the night before). And the rare occasions you hear something new make it worth listening to time and again. The boys are learning to eat much slower because they have to stay seated until everyone is finished. The table is formally set by Dad while I cook dinner. And over dinner they take their evening meds. This has to be timed correctly so they don't fall out before dessert (which is imperative to them). I bake a lot here. Dad loves big, soft cookies. Mom adores all things sweet (brownies & muffins especially). After dinner Dad cleans the kitchen and they either play cards or go to bed. Rarely is there a shift in the schedule. And as it is that time of day I better get to it (got to figure out what salad we are having). Everything else will be ready right on time. And so it goes.
Nov. 18, 2009
When dealing with the demented mind you have to remember that they have no control over their actions at times. You cannot take outbursts personally because they are not personal. And you have to embrace the good, clear moments as they occur (unfortunately over time they get fewer and farther between). Dad slept late today which gave Mom and I a wonderful time to visit uninterrupted. When he finally made an appearance he was obviously well rested, clear minded and in good spirits. My heart swelled as I watched her roll over to lay her cheek on his arm. With shaking hand she gently touched his cheek and whispered, "Good morning. I love you.". The tears in my eyes at this shining display of affection were matched in Dad's eyes. "I love you!" he replied loud enough for her to hear. He kissed the top of her head and made his way over to me. I then received a kiss on the top of my head and an "I love you, too, Sweetheart!" Overwhelmed at this display of affection, I filed the moment away to be pulled out the next time he and I clash. How hard it must be for him as the family patriarch (respected, admired and even feared) to take direction from his "sassy" daughter-in-law. We are 2 very stubborn people learning our boundaries without a guidebook. But as much as we cross swords, we each know that the other loves us. In anger I once pointed out that I am the one who gave up my home, one of my children, my grand kids, my cats, MY LIFE to move here. I told him he has to try to see it from my point of view. He has been trying to ever since. And I was wrong because this is MY LIFE...and theirs. I see things differently now. Being here, taking care of them & teaching them about unconditional love is a gift I am being given. I am learning some of the most valuable lessons there are to learn in LIFE! And though our road will be long and hard, we are in this together. We will laugh and we will cry, we will feel anger and contrition but in the end we are not alone. And that is what matters most.
The elderly are generally prideful in my experience. While having pride can be a wonderful thing at times, the loss of dignity that comes with old age is not. There is a fine line between pride and dignity. As we age, we lose the ability to care for ourselves (and sometimes we simply no longer have the will to try). With that comes a loss of dignity. I always try to allow for as much privacy as is possible (which enables them to maintain their dignity). I do not pity them. They have had full, busy, successful lives. But I do sympathize with the frustration they must feel. Always remember to handle elders with respect, allow them to have their pride and as much privacy as possible. And they will feel more dignified as a result.
Nov. 19, 2009
Before I moved I babysat 3 of my grandchildren full time so Melissa could work. I have custody of Jordyn, Michelle's 1st born and have since he was 1 (I can't believe he will be 11 next week. I was up every night til 2 or 3 am, got up in the mornings at 7 to put Jordyn (and usually Cameryn) on the bus. Went back to bed til 10 or 11 (whenever possible). Here I am exhausted by 8 pm and up at 630 every morning.
I have discovered the rejuvenating power of being alone with yourself & God. I drink coffee, read, reflect, daydream, pray, go for a walk...it doesn't matter what I am doing, it only matters that I do it alone. The pace here is snail's pace slow (big difference from chasing kids all day) and it's own way exhausting. I am up & down stairs 40 times a day and there is absolute minimal privacy inside this house!
Let me give you an example of lack of privacy (sorry to those of you who know this story already). There are 2 doors to my bathroom (mine, huh! I share it with Richard & Jeremy). One to our bedroom & one to the laundry room. So, the other day I am kicked back enjoying a nice hot bath when there is a knock on the laundry room door. And I hear Dad say, "Anybody in here?" I reply, "It's me, Dad". He then says, "What are you doing?". I ask you- REALLY, Does it matter? But I reply that I'm taking a bath. To my utter horror I hear the door open and Dad's voice 2 ft away telling me he needs to talk to me. I squeak out a "Can it wait til I'm done?" while I quake at the thought of the (Thank you, God) navy blue, impossible to see through shower curtain being pulled back. Relief doesn't begin to cover how I felt when he told me to hurry up and left the bathroom pulling the door closed behind him! Seldom have I moved as fast as I did to lock that door. (You can bet it is ALWAYS locked now.
Dementia moment- Dad truly didn't see anything wrong with this behavior because to him it was urgent that he speak to me right then! I spend a good portion of every day talking about boundaries & privacy. The funny thing about it is they are 2 of the most privacy intense people I have ever met. I have discovered the aged tend to see us as ignorant children. Children do not require privacy in their eyes. It is a major issue here. All I can hope for by emphasizing it over and over again is that they will gradually begin to understand. Everyone has a right to privacy. A right to their own space. A right to set boundaries. And that is exactly what I am trying to do. I must also confess to seeing humor in the "bathroom incident". It just took me a while to get there.
I have to begin by saying this has been one of THOSE days. Dad decided to do laundry (Heaven help us all). Because Jeremy's room does not have a closet he has been preparing to move his hanging clothes into the laundry room closet (there are 2). So Dad starts raising hell about the mess in the laundry room. He then proceeds to add powdered soap to the washer, I had already put in liquid because he insists that's the only kind he likes. Not once but 4 times (the last 2 scoops went directly into the liquid dispenser). And when I pointed it out he told me he knew exactly what the hell he was doing. Wow, could have fooled me.
As soon as the coast was clear, Jeremy made a beeline for the "mess" and it magically disappeared. I thought that would be the end of that but it took Dad 5 more trips to the laundry room to notice it and quit griping. Then he started his tangent about how "you people" eat too much. Seriously my boys eat about what average boys their age eat. I make balanced, mostly made from scratch meals. He complains about the money we spend on groceries and insists I should just save the table scraps for them. 20 times a day I am told "we don't eat very much". Believe me, I know this.
I also know that Mom's appetite is better than it's been in a couple of years and he eats every bite I put on his plate. So I will keep cooking good healthy food and he will keep complaining (until he can find something else to complain about). He is bored out of his mind most of the time so he fills his time griping and complaining (almost always preceded by, "Now I'm not complaining but I want to talk to you"). Some days are tougher than others. I must admit, I will be glad when dinner is over (and we have eaten too much to suit him). So that I can cheerfully leave the dishes too him. I think it will be the perfect time to go take a bath. :)
Nov. 20, 2009
For the elderly, the fast paced world we live in can be too much. They lose the will to try to keep up (among so many other things). Dad has better days when he has chores to fill his time. So instead of brushing aside his repeated offerings to help, I give him simple chores to help me around the house. He sets the table for dinner, does the dishes after every meal, runs the dishwasher at night (and unloads it every morning), he sweeps and vacuums (it usually takes a couple of days to accomplish this, as he loses the vacuum regularly). He thanks me profusely for taking such good care of them and "allowing" him to help. If I try to thank him and explain what a big help it is to me, he waves me away. Mom needs projects to stimulate her mind. So I come up with things like going through old pictures, report cards & a ton of memorabilia that we are giving as Christmas gifts this year. Or having her go through her jewelry boxes and picking a piece of jewelry to give to all the girls in the family. She thinks it is fun. I think it's a great way to make sure the that things get to the person she wants to have them. It is all about keeping busy. If you are being productive, your mind stays sharper. If you are needed, you have a purpose. If you have a reason to live, your quality of life will improve. And these are just some of the things we are teaching each other.
Dad has been worrying over the wood in the woodpile for days. Last winter they were in the hospital and rehab center so much that they barely used any. He has insisted it was 2 or 3 years old and "no good". So when the "Wood Lady" called this morning, he asked her to bring new wood and pick up the "no good" wood.
A couple of hours later a truck pulls in with 3 generations of firewood deliverers, mother, daughter and grandson. With Jeremy's help the 2 women unstacked all the older firewood, then unloaded & stacked the new wood, then loaded the old wood up to take away. And where was I while all this physical labor was going on? I was entertaining 5 month old baby Aadan, of course. Such a chunky little cutie!
After a while Dad came out and asked the ladies if I could take the baby in to meet "his bride". Mom and I oohed & ahhed over the little guy, then she started to pull out toys for him (he wasn't the least bit interested in anything but the new faces around him. When Dad came in he announced loudly, "He's awful cute. Real cute. But, Shari, don't go getting the idea to adopt him. He has a perfectly good mama outside to take care of him!" "It's ok, Dad. We're just borrowing him." I replied. Mom rolled her eyes behind his back and played with the baby.
Dad then proceeded to tell Aadan that he could tell he would grow up smart and when he graduated from high school he should come back to see. That he will gladly help him with college. Then he turned to me and explained that a baby like this (back in plantation days) would have been favored and possibly taken in, educated & set free. That this little guy would have been lucky like that. He could tell. And on that note, I took the baby back outside. Where Dad followed me telling me in a loud stage whisper that the wood we were getting didn't look any better than what he was returning. At last he decided maybe Jeremy should be in charge of fires now. He intends to teach him how to do it right (hmm a new project?) He then graciously thanked the "Wood Ladies".
Nov. 21, 2009
Dad has made himself Mom's self-appointed protector. If she is out of sight for more than a few minutes, he freaks with worry. Imagine this... You go to the bathroom and close the door (been there, sigh). After 3 or 4 minutes Dad goes looking for her. He knocks on the bathroom door. "Del, Sweetheart, are you alright?". No reply. Harder knocking followed by, "Del. Are you alright?". Pounding now, there is terror mingled with anger. "DEL! ARE...YOU... ALL... RIGHT?"
We are back to knocking but now it's used to punctuate his yelling. "ARE (KNOCK) YOU (KNOCK) ALL (KNOCK) RIGHT (KNOCK)??".
The tiny little voice is gone as she rather yells back, "I...WILL...BE...OUT...IN...A... MINUTE."
Her frustration is palpable. But so is his. If she feels dizzy (a frequent occurrence) she will go lie down for a while. Dad will follow her to the bedroom and tell her to get up. "You can lay down all you want to when you are dead. But to live you have to get up and keep moving!" is frequently said. To which Mom sighs (she does it all too often) and struggles to get up.
I spend a lot of time trying to run interference for this quiet, gentle creature that is my mother-in-law. I occasionally point out to Dad that she is legally deaf. (And I once again have to remind myself that he is entangled in his illness). To which he argues that hearing doctors just say that to get you to buy hearing aids that cost $2000. It's the Great Hearing Aid Conspiracy. He insists she hears just fine, she just ignores him. But I was there when she was last tested. I felt absolute joy as I watched her hear clearly for the 1st time in years. And we all avoid talking about it in front of Dad. But I am going to try to find a way to get them for her. How much do you want to bet she will wear them more when he is NOT around? But for now I'm going to claim a small piece of freedom for her. I am taking her shopping for more circus animals for her miniature menagerie.
Shopping For Circus Animals
Without a doubt Mom's favorite store is Michael's. For days she has been hinting around at wanting more animals for her "circus". So I decided it was time for a girls only shopping trip. She, of course, wanted to go to Michael's so off we went. I had to get gas and stop by the bank, both of which she impatiently tolerated. The air in the car practically vibrated with excitement when I pointed out where Jeremy works, and where Richard will be working starting Mon. (No more 1 hour commute).
When we pulled up to the store finally, she started tugging on the door handle. "Hang on a sec, Mom. I'm going to grab us a wheelchair with a basket." I quickly wheeled one out and got her settled in it. She insisted she wanted to go look at the bead section (just inside the door) while I went to park the car.
By the time I got back she had progressed all of 6 feet and I thought to myself, "Piece of cake". After a good 20 minutes of looking at and exclaiming over the incredible selection of beads they carry, I gently reminded her (yelling so she could hear me) that we needed to find the animals we were looking for. Much to the amusement of almost everyone within shouting distance. We finally turned the corner onto the main aisle where it took us an eternity to progress app. 12 feet to the animal section. (Imagine taking a small child with a pocketful of birthday money to a candy store & saying have fun, such was her excitement).
We spent the next hour & a half looking at animals. When we finally had 30 or so she then began the process of deciding which ones she absolutely could not live without. As the rejected ones were returned to their correct places she apologized to them. "You are a fine horse but I can only buy a few today. I'm sure someone will be along soon to take you home." or "Mr. Octopus I would love to have you but you really have no place in my circus. If I make an aquarium someday I will come back for you." or "As much as I would love to take you home little fairy, I would have to make a place for you. Perhaps I can get you another time. Maybe I can save up some money." (please the fairies were $7-$9 each).
Once the lucky ones were selected we set off in search of a birthday gift for Jordyn. After many, many "no's" she decided what she wanted to get him was a fish. So $30 worth of animals safely in a bag we left.
I left her at the curb to retrieve the car (where she unlocked the brakes & had to be stopped from rolling into oncoming traffic by a kind-hearted stranger). I, of course, was watching this helplessly as I rushed through the crowded parking lot. I deposited her safely in the car & returned the wheelchair.
Off we went to WalMart in search of fish. When we got there I again pulled to the curb and rushed in for a wheelchair (motorized this time). As I got her on it I cautioned her to stay put while I parked, thankful that she didn't know how to work it. Before I could park and make it back, another helpful passerby showed her how to work the darn thing!
1st thought- Oh God, where is she. 2nd- please don't let her get lost. I stepped through the doors to see her hauling butt (I know they aren't that fast but it's how it felt) around a corner. I quickened my pace to catch up with her. She went straight to toys and grabbed a Monopoly game. "I found it!" I was a bit confused, "Found what, Mom?" "Jordyn's birthday present. Do you think he will like it?" she asked with shining eyes. With a smile I told her it was perfect. We hustled to check out and wheeled outside (to go through the car routine again).
My phone rang. "Shari? Are you girls alright? It seems like you've been gone a long time." "Everything's fine, Dad, we're leaving WalMart now on our way home." He breathed a sigh of relief and said, "Be careful. I love you girls." And as I was taking the wheelchair inside a lady stopped me and nodded toward my car. "She's so sweet. You are lucky. I had to put my mom in a home last year. I just couldn't do it after her 3rd stroke. I admire you." She squeezed my arm and said, "God bless you." Then she walked away. As I got in the car my eyes clouded with tears. I am indeed so very lucky.