This blog is about life with my husband who was diagnosed with Early Onset Alzheimer's and Frontal Lobe Dementia in 2008. He was 64 at the time although now, knowing more about the disease, Alzheimer's was present many, many years ago, which is why early detection is so important. As you read the blog the character"Al" that I created in 2008 represents the way that Alzheimer's is invading our daily lives.
This is very sad to admit, but Sheri is envious of other Alzheimer spouses that had deep meaningful relationships with their spouses before the disease took over, at least they can look back and cherish a life time of moments. In Sheri's case that is not true, things changed very quickly after her two beautiful daughters were born. Bob was 45 when they married (his first) Sheri 31 ( her second), Sheri does not know why, whether early signs of Bob's disease or the stress of the new family. Sheri and Bob were never able to nurture their relationship to make it a deep and rich marriage. Sheri is not placing blame here... they had just grown apart quickly. She had set a goal that if they were not able to find their way back to the marriage by the time the girls graduated high school she would work towards a divorce.She did not want her children growing up without their father in their lives.Years later she sought counsel with her Pastor. At that point the girls were about 3 years from graduating. And then the diagnosis came. So Sheri had not lost her husband only since his diagnosis, she had been fighting this battle for most of their marriage. The diagnosis just meant there was no way back.
In Bob's first career he was in charge of remodeling stores for Montgomery Wards. He had to read blue prints, be able to conceptualize, and had a technical eye for things."Al" however was fascinated yesterday when he discovered he could see his reflection in the hollow of a silver teaspoon, and even more fascinated when he turned the spoon around and his reflection was distorted. "Wow, you have got to see this." "Al" announced, I never knew this before, I wonder why it does that?"
1. Why there are directions up, in the bathroom
2. Who pays the bills
3. Why it is not unusual that he doesn't know who pays the bills
4. Why he doesn't think it unusual that he can't find the bathroom
5. Why there is a choir at work
6. Why he has never been alone anywhere in the past 2.5 years
7. Why he has not noticed he has not been alone in the past 2.5 years
8. Why at work he wears a name tag that says Adult Day Center on it
9. Why he can't remember where the girls are
10. Why he can't work the lawn mower, drill, TV so on and so forth
Bob has absolutely no awareness or understanding that he has a disease. He has never asked, and they have never really spoken about it. He hears the word Alzheimer's on the TV and does not blink an eye. He was there the day the doctor told Sheri. Well, at least in body.
Sometimes Sheri thinks it is a cruel joke for her to wind up with someone so emotionally detached, because she is extremely emotional and longs for a relationship she can't have. She will continue to have faith and she is sure there is a lesson in here for her somewhere. She just wishes she knew what it was.
2 Corinthians 4:16-18 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
Sheri let Bob and "Al" help her match up lids to all the plastic containers yesterday, as Minnesota has turned from the frozen tundra into the very wet and soggy tundra. Sheri was a little surprised to see that he was not able to do this himself. He would pick up one lid try it , if it did not fit put it down and with in seconds pick it back up and try the same lid on the same container again. The cycle would continue until Sheri would intervene, but Sheri is finally learning this disease because she "chose" when to intervene so she could work on something else... what does it really matter right? :)
Sheri hates to admit it, but she is struggling with "Al's" version of an out going personality. Sheri took Bob to what the city calls "Music in the Park" last evening. The band there was playing John Philip Sousa music and she new Bob would enjoy it. Boy did he enjoy it. But "Al" was for the most part "conducting" the band, and showed no signs of stopping, for the whole hour. hands waving high in the air, funny gestures, Bob would have be appalled at the attention he drew to himself. Sheri knows it was wrong but subconsciously she pretended she was his aide and not his wife. But she was glad he enjoyed himself. She guesses we all do what we need to do to survive the changes this disease brings on in our spouses. :)
Sheri let Bob empty the house trash can and put the garbage outside in the garbage can. The can is 5 steps from the front door and Sheri was watching from the window. Bob came back into the house very upset. "Al" said "we've got a problem" Sheri replied "what's wrong? "Al" with a bit of urgency in his voice said "Someone is using our garbage can" Sheri responded questioningly "what makes you think that?" "Al" said "Well I went to put the trash in there, and there was already trash in there, and I just emptied the can. Sheri said "oh, well you emptied this one here in the kitchen, the outside one is for the garbage man." "Al" with frustration in his voice replies, " Why doesn't he use his own garbage can?" :)
Sheri has wondered often what it must be like to be inside Bob and "Al's" head. They were sitting out side in Sheri's "not quite her garden" garden last night and "Al" looks over at the two lounge chairs across the lawn, that happen to have the backs of the lawn chairs adjusted at different heights, "Al" speaking Bob's confused thoughts says " I wonder why they made those two chairs different sizes, they are suppose to be a set." Which was the only thing he said in the 45 minutes they were out there.
What a strange disease.
Bob was making himself a sandwich, bread is in the toaster. Bob stops to go to the restroom. When "Al" comes back he stops in the living room and starts looking in the record cabinet. Sheri says "what are you looking for honey?" "Al" responds "Well, I thought I had some bread, but I don't know where I put it" It is in the kitchen" Sheri said pointing that direction. "Oh, I wasn't sure" "Al replied.
Sheri was just impressed he remembered he had some bread. :)
Bob and "Al" are obsessed with Lilacs. They had Lilacs at the their old house, the one they lost to foreclosure (when Sheri could no longer keep life together on her own) in 2011. Funny thing about that is that Bob was not fond of the Lilacs at all. he did not care for the smell. "Al" however has a different opinion, he points them out every where they go. Most of the time he sits silently in the car, but he will see a wall of Lilacs in someones yard and immediately comments on them, asking where we can get some. Sheri has been a little bit evasive responding to his question, the tiny house they are living in is a rental and they do not have permission to put things in the ground. Then the problem resolved it's self yesterday, when she realized that the overgrown shrub she chopped down to nothingness last year when they moved in (so it did not bloom), blossomed this year... into a Lilac bush. :)
When Sheri is overwhelmed she takes pictures, when she is happy she takes pictures, when she is sad she takes pictures. Sheri is trying to learn to substitute photography for food. Which of course was a substitute ... for love.
That is what happened when Alzheimer's took over her world, even before she knew what it was.
Sheri is trying hard not to let the stress she is experiencing at work, roll over to home. She can always tell when Bob and "Al" pick up her stress, but Sheri misses the time when she could come home and share her stress with Bob, they shared a very strong work ethic together. Sheri misses that.
"Al" will ask many times over the course of the evening, what time the girls will be home. Sheri has learned to take a deep breathe before she says that Daughter number 1, ( the one who wears her heart on her sleeve) has her own apartment, and Daughter number 2, (the one who shields her heart with her sleeve) is at college or work.To which "Al" replies "Oh, I didn't" know that" and then Sheri quickly changes the subject... to anything. Until the next time.
If Sheri is not present when Bob climbs into bed... "Al" can not figure out which covers to get under. Which means a night of Bob sleeping on top of everything other then the bed spread, and for Sheri it means no adjusting her side of... anything. Long night. :)
Sheri and Daughter number two ( the one who shields her heart with her sleeve), were moving some furniture around yesterday. The wooden cabinet that holds the hundreds of 33 records began to come apart before their very eyes. They wound up having to unload the records and reattach the back board with a drill and some screws. Part way through Bob picked up the drill and said "here, let me do it" which was followed by "Al" looking up at the both of them, asking "how does this work?" Daughter number 2 looked up at Sheri and the sadness overwhelmed both of them. The thought that a disease can take such basic knowledge, from a man that managed a hardware store seems incredibly unfair, and so hard to accept. Serenity prayer God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen.
Sheri took Bob and "Al" out to take pictures yesterday. Bob REALLY enjoyed seeing the birds . So much so that later, at the very nice, day late birthday dinner Daughters one and two took her too, "Al" told the girls " Boy you should have seen all the birds we saw today." He said it 6 times in about thirty minutes... at least Sheri knows he had a good time. :)
Bob the hardware, build any thing fix any thing guy is into much less messy things these days. He does not like getting his hands dirty. Now he does not appear to like getting them wet either. "Al" is helping Sheri wash the dishes, but "Al" is drying his hands in between each dish that he washes....
Oy vey :)
Sheri set a goal back in January, she did not meet the goal but she is is sill proud of herself. She has lost 20 pounds.(actually she lost a few more than that but gained it back since her thumb incident :( ) It is a very slow, hard process. But never the less she did it. She is stuck now hasn't lost any in a while, but at least she knows she can do it. Bob and "Al" have not noticed but no surprise there. He also does not realize today is Sheri's birthday but that's ok because birthdays don't count any more. She is going reset her goal and plunge onward!
Little Zoey the cat, sat with Bob and "Al" for a quite a while yesterday. Bob was delighted, grinning from ear to ear. Bob did not look too comfortable the way the kitty was laying on him, his legs were bunched way over to one side (and at 6'4 that is a lot of leg) but "Al" said "I don't want to move I think she is sleeping." They were so darn cute. :)
Bob is still upset that when they leave "work" (code for Adult Day Center) the other staff takes his name badge. When they got in the car yesterday "Al" said with an air of frustration in his voice " I don't understand why they take that from me, they certainly aren't going to use it. Besides how will I know who I am." :)
Sheri is hoping that was Bob's humor showing through at the end there. Quite frankly it is getting harder and harder to tell, but he wasn't smiling.
Sheri is trying to learn to let God's love be enough for her, but she is human and wants love and affection she can see and feel. She wants her husband to comfort her and tell her they are in this together. Some days she just does not want to make one more decision alone. She doe not want to gather, direct, or do anything that is more caregiver like, then wife like. Then she realizes that love is all of those things. Jesus did all of these things for her as she looks back over the the last few years of her life. He held her, made decisions for her, gathered her belongings, directed her path, and cared for her while she was in turmoil through her cancer, the Alzheimer diagnosis for Bob, bankruptcy, joblessness and foreclosure of her family home. It is so easy, when things are better, to forget where you have come from and how you got where you are. Sheri needs to pause, praise and pray. God is good. Jeremiah 29:11For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.
Bob is not sure why everybody else has Lilacs in their yard. "Al" says he never noticed before, but he he thinks the tiny house Sheri rented needs some too. This weekend he thought he needed some at least 2 times an hour.... that's A LOT of Lilacs!
Bob popped up out of a sound sleep last night, startling Sheri. "Al" with a new enthusiasm in his voice said "Now we can play hopscotch!" That memory must go waaaaay back, because Bob has not HOPPED any where in a very long time. :)
Bob is watching the bird on the hook of the bird feeder. There is another bird singing in the background that "Al" can not see. "Al" speaking Bob's mind says to Sheri " That is amazing, that bird is singing without moving his lips." :)