I am often asked "How is Gary doing?" My response is typically, "Pretty good considering. But the disease is progressing." There is usually a follow-up question..."How are YOU doing?" That will have to be another post...I want to use this post to explain some things, and I need to say up front that this is not primarily a plea for sympathy or help, rather to get people up to speed. Some of my blogging friends have never met us, some of our older friends have not seen Gary for many years and many of you want updates so you can pray more specifically for us. (In my entire life, I have NEVER seen so much specific, detailed attention from the Lord to our specific situation. I am 100% convinced that God loves us and hears and answers the prayers of His children.) In order to give an accurate picture of where we're at with this progressive disease, I have to give a bit of information. Please bear with me.
. As you probably know, A.D. starts with a bit of forgetfulness, or confusion, and results in complete brain destruction and death, usually from a secondary problem, such as pneumonia or infections. Though you can't place anyone in a specific place in the progression because of overlap, both our neurologist and his primary Dr. have stated that Gary is in the advanced stages. His mobility and overall health, disguise this. From the Alzheimer's Association:
Stage 7: Very severe cognitive decline: (Severe or late-stage Alzheimer's disease)In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases. At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.
Everyone is different, and no two people experience ALL of the listed symptoms, or in the typical order. For instance, some folks are chatty all along. Gary may say one or two words a day, which may or may not make sense to the listener. (Have we ever thanked God for the ability to communicate with those we love? I used to take this for granted.)
ACTIVITIES OF DAILY LIVING:
Early on with this illness, we were told about the eventual need for help with A.D.L. I had never hear that term before. How well I know it now! Here's the list from the Alz. Association, and a few examples of how it is for Gary and I.
- Bathing - Yep! I bathe him.
- Dressing - Gary lets me dress him, and tries to help, but in buttoning his shirt, for instance, his hands just get in the way. Lately he has taken to grasping the closest thing to his hands. The shirtsleeve, my wrists, anything. By putting a handkerchief or washcloth in his hand, I can draw the sleeve over his hands without "velcro-fingers" slowing things down.
- Grooming - If Gary looks scruffy, it's because I didn't do a good job shaving him, so don't blame him...it's me.
- Oral Care - He lets me floss and brush his teeth. He may even try to hold his mouth open, but this is getting harder and harder. I usually have to pry it open and NOT get my finger between his teeth. That can be a BAD idea! I take him to the dentist for a cleaning twice a year, and if I sit next to him, and reassure him while talking to the hygienist, he cooperates. We have a fantastic Dental office who have been incredibly helpful. If he gets a cavity, or needs a crown, it will be a BIG problem, so I am always concerned that we keep his teeth and gums healthy.
- Toileting - Yep! Nuff said.
- Transferring - (moving from one place to another) So far Gary is mobile so we are not using a wheel chair. That day appears to be approaching, since his balance is so poor. I do not let him walk anywhere without someone at his elbow. He tends to tip backward and has fallen a few times. In some ways a wheel chair would make things easier, because folks would understand. As it is, when we are in public and we pass through a doorway, he will try to grab on to the door handle, out of habit to open it for me, but then he won't let go. This often causes a small traffic jam as people wait for me to un-peel his fingers from the handle. A wheel chair would signal others that we need some help with doors, etc. A wheel chair would allow me to wheel him to the table, instead of scooting his chair. He does not scoot. He does not move his feet forward when I am scooting the chair, so I have to manually move his feet in front of him so the chair doesn't crunch up his calves. The reason I am delaying the wheel chair, is that the less mobile he becomes the more his muscles will atrophy and he will have a better life if he is able to move. But, as I said, I can see the day approaching...
- Walking - When just stepping out, he consistently uses the wrong foot. For instance when you should use your right, because you are headed to your right, Gary uses his left, so he ends up crossing his feet. Kind of a "scissor step". So he must be guided along. Some mornings, when he has socks on, and I'm leading him he doesn't even take a step. I end up towing him across the laminate. He actually looks like he's water skiing. I have to tell him... "WE ARE NOT WATER SKIING! You need to take a step." I am pretty sure he has a twinkle in his eye, and thinks it's fun.
- Climbing Stairs - Going up's not too bad, but going down is another story unless they are not too steep. I now avoid them if possible. Elevators are ok if they are not crowded. Gary is not claustrophobic, but I can't maneuver him around very well, and he doesn't understand "stepping aside" or "moving over" to make room for someone. The elevator at church is particularly difficult, because people are so willing to "squeeze one more in", not realizing our situation. Once they understand, they are extremely accommodating to us, but I often wait until the next load, which may be more empty.
- Eating - Most meals take an hour. (He was always one to "savor" his food.) He takes small bites, which he tends to nibble. He is having an increasingly hard time dealing with swallowing. He feeds himself a few bites, then must be fed because he gets distracted, or closes his eyes, or turns the spoon into a screwdriver, or some other mechanical tool.
- Shopping - Stimulation overload. Stores are not a good place for someone like Gary. There's loud music playing, people coming and going, products, displays, etc. etc...There is NO WAY he could buy anything. BUT in January, we went for Coffee and a sweet roll to Panera Bread, and he stood with me at the glass display case and when I asked him what he would like he actually pointed to a cinnamon-roll-muffin thing. It is random and rare, that he would make a 'choice' and I was elated.
- Cooking - I keep the sharp knifes put away out of sight if I am not using them. I do not leave them in the sink to dry. I keep Gary from going near the stove if something's cooking. I have had to stop him from trying to pick up a hot pan. He would not be able to pour a bowl of cereal for himself now. He does, however open the cookie jar and take out a cookie. :)
- Managing - Impossible. There is no sense of time passing, or to-do lists, or problem-solving. He no longer writes, or draws. I do not know if he recognizes his name.
- Medications - He stopped swallowing pills whole several years ago, but at least he chews them up and doesn't refuse them. He used to chew up his Asprin, ever since I met him, so don't feel too sorry for him about this. I think his taste mechanism is somewhat off though because he doesn't even make a face. If they are "timed release" it can be a problem, so I have to find a version that can be dissolved in the mouth.
- Using the Phone - Phone calls are impossible so he stopped carrying a phone in 2010. (I did see him pick up an apple, hold it to his ear, and say "hello" when he heard a phone ring recently though.) Thank the Lord for Skype so he can sometimes sit in on a call to our daughter, April's family in Florida. At least he can see them, and hear them.
- Housework - (Substitute Yardwork in Gary's case!) When Gary is taken for a walk, he often stops to pick a "weed". He does not differentiate between weeds and other plants, but he does pick up little twigs, or sprigs of things. He still finds some pleasure in "pruning, weeding, and tending." If he bends over, he must be supported and lifted back up, because he can't usually get himself back up again. If he does rise up again, he will typically go right over backwards.
2011 (Gary is too unstable to do this now)
- Doing Laundry - Gary never did the laundry anyway, :) but now there are multiple mishaps and spills, making the washer and dryer run daily.
- Driving - Gary stopped driving in 2008 and voluntarily surrendered his license.
- Managing Finances - He hasn't needed a wallet for 2 years, because he doesn't shop or understand how to count, or make change. BUT...when asked in February if he wanted to make a Valentine's card for me at the Adult Day Health Care, in one of his rare speaking moments, he said, "How much is it going to cost?" His helper couldn't wait to tell me about it because it was the only thing he had said in several weeks. I was presented with a pink construction paper card, with a couple of stickers and a doily glued on. To me, the fact that he spoke, was the best Valentine gift and it didn't cost anything. :)
At this point, Gary still doesn't wander, repeat himself, get agitated, angry or combative. He continues to enjoy working with his hands, turning any object into a tool; a straw, a spoon, a coffee cup etc. This can result in a foot massage for me, if I'm lucky!
3 Days Ago
I'm sure he usually recognizes me, and other family members and a few friends. It has been since 2007 that Gary was diagnosed and since 2006 that the problems began. Now, 6 years later, here we are with a life dominating illness. I love Gary more than ever, and have been learning from him all along. While Gary was healthy I took many things for granted, and even complained about some of the things that I now long for. He has lost so much. So have I. I sometimes cry out to the Lord that it hurts to "lose my best friend, and on top of that, it's hard work too." But, God is enough for us. I trust Him. He has proven over and over that does not bring anything into our lives that is unkind and there are no mistakes. Our burden has been shared and lifted off of us by so many friends and our wonderful family that I can honestly say that I'm joyful and fulfilled. I believe that Gary is at peace too. If you are around him much, you would agree.