Musings; It’s Been a Long, Long, Long Winter
It was just over three years ago when my husband was finally diagnosed with Alzheimer’s disease. Our world had been topsy-turvy for a long time before that diagnosis, but now at least we had a name for it. Actually the diagnosis we got was dementia of the Alzheimer’s type. It was very hard to get a diagnosis of dementia or Alzheimer’s. There are so many variations on the disease and doctors are hesitant to diagnose. The only true way to diagnose is to analyze the brain after death although great strides have been made in the last few years to identify these type of diseases.
In fact after a long interview and a three page report from one doctor--the end result was that they said that he denied alcohol abuse (of course, he did--because there wasn't any--only social drinking). The report ended by saying to drink more water (dehydration can also result in some of the symptoms) and to write things down (per the memory loss). I still had a long road ahead to get my husband diagnosed so I could get him the proper medication.
He had MRI's and CAT Scans and all the tests done twice and some three times because I kept pursuing and knew that there was something very wrong. The doctors finally ruled out a stroke or transient ischemic attacks (TIA's). It's good that they were so thorough, but it kept prolonging the diagnosis. The longer the time of the diagnosis--it lessened the time with medication. The medication only slows the progress of the disease--not stops it so the sooner I could get him on medication the better.
My husband and I have been married almost 32 years—it was a second marriage for him and the first for me. His first wife died of kidney failure and I met him two years after she had died. I always said if I could make him smile that would be my job in our marriage, not realizing over time I would lose mine (smile that is). I also said as the reason I was marrying him was that he needed me. I didn’t realize at the time that I was ignoring what I may have needed. These things were never truer than in the last few years, but that is a whole other story.
This is the story of the longest winter of my life and it is the story of the winter of my husband’s life.
My husband always had certain idiosyncrasies, but that was him. As I have learned more and more about this disease some of the symptoms of the disease could show themselves as early as 10 to 20 years before a diagnosis. We have lived in a home where this disease had its hold on him for years earlier than the diagnosis. I could see glimpses of it over the years.
If there is any consolation in this story it is that when we first got married my husband had the biggest temper ever and would throw things and put his fist through walls, but never ever hurt anyone intentionally. Over the years his temper became a lot less as pressure from work lessened and I would get him to talk about what was bothering him. Sometimes it took hours, but he would finally let down those walls and know that he didn't have to handle everything on his own as he had done for years. He could come home and talk to me about those things and let them go.
As the years of our married life went on his true personality came out he always wanted to help me and others. He had real joy helping me around the house and entertaining many people over the years from church groups to showers and family gatherings. He would choose helping cut up vegetables in preparation for a party rather than pursuing some other form of entertainment to get out of helping.
Finally with retirement in 1996 his temper became almost non-existent and now there is no sign of a temper at all—he only wants to help me and other people. I knew that man was always there, but sometimes we really had to hunt for him. Now I even would love it if he would yell at me, now isn’t that sick? After all those years of trying to figure out where his anger was coming from and I would talk him through those bouts of anger and now nothing--no talk at all. He no longer gets angry although I wouldn’t have judged him if he had. It must have been very scary for him, but he always indicated even at the end that he was not scared. He is a man of great faith and I think that has carried him through some of his tough times.
Life, to say the very least, was bizarre. When this disease started to show up; in my naivety I thought I was going crazy. I used to say I was being “gas lighted” from an old movie by the same name with Charles Boyer and Ingrid Bergmann. I felt as if I was intentionally being driven slowly and methodically out of my mind.
The truth was that my husband did not know what the truth was—trying hard to cover that he didn’t remember some things. I would be told one thing and another would be true.
There was undeniable hurt on my part when he went into a singles club and filled out a form to find someone because he was widowed—I could see why some marriages with a spouse with Alzheimer’s end up in divorce before they know that the illness has taken the person over and changed their personality. I found out about that little excursion when they called the house to get more information. I also realized he never would have put his home phone number nor his address down if this excursion was for real. Of course, after the fact I realized at that particular moment in time he thought he was widowed and it was the time before we got married. He told me after I confronted him about the phone call, that he was in the office and just left the paper not knowing exactly why he was there.
Trying to keep one step ahead of the disease and to reason things out with him didn’t work because the reasoning is gone for the victim of the disease. To be logical in the face of this disease takes strength and sometimes I feel like I am on a runaway train and can’t even stop it for an hour and get off and rest. Feelings of hopelessness besides the fear, loneliness, frustration, and being just plain scared are all part of what I feel every minute of every day.
The hardest is no conversation and no verbal communication at all. Tonight the longest sentence from him was when I finally broke down was, “You can talk to me”. One night I couldn’t hold it in any longer and was crying and he said to me, “Do you want a baby?” He must have been remembering years earlier when I truly wanted a child. Those were the rare occasions that he spoke. The last words he would say out loud were The Lord's Prayer and some words to songs. Sometimes he would surprise everyone with a full phrase.
There was a lot of frustration on my part when I tried to figure out what he wanted because the words just did not come out. Trying to be patient with the soundless tears falling down my face as I am driving and trying to figure out when he wanted to go over there or just pointed—he meant he wanted to go vote not to the grocery store or the department store that also was in that direction. Another day he wanted to go to the “eagles” and I just could not figure out where he wanted to go. Fortunately he didn’t get very upset—I would ask him if it was really important and if he shook his head yes, I would try desperately to figure it out. If not I would just say it was ok and that we would figure it out later and of course, he would forget about it later.
One of the reasons for hours and hours of no sleep trying to keep one step ahead with bills. He had taken care of the bills and I found that he had signed up for and had about 12 different credit cards all with items on them. He would spend money foolishly or on a whim. Big ticket items would be sitting in my living room when I got home from work—such as a vacuum cleaner that cost one thousand dollars or a garden tractor when we had no garden. Of course, we immediately sent those things back. The one thing I couldn’t send back was a $2,000 riding mower that he had put on a new credit card and I didn’t find out until I kept asking what happened with the old mower. Apparently he had traded it in and never took delivery on the new one because he didn’t realize that he had bought the new one and filled out yet again another credit card by signing his name for the “Yard Card”.
Now, this was all in the realization that a man who grew up right after The Depression was frugal--so this was very much out of character. This was a man who believed in a "green" lifestyle before it was fashionable.
The way I got around just taking over the bills was to tell him that I needed to know what came in and what went out to see if I could retire or not. Slowly I started keeping track of what we owed with him still writing the checks and signing the checks. Then slowly it went to me writing the checks as he couldn’t get the number amount and the written amount the same and we got into trouble with our mortgage one month because of it.
Then I started writing all of the checks and he would put the stamps on the envelopes—that stopped the day he didn’t put a stamp on a bill and decided on his own to walk the bill to the office of our insurance company to drop the bill and check off. He taken letters to the mailbox and didn’t come back in a few minutes. I ran outside and no sign of him. I immediately called the police and they found him blocks away on a busy thoroughfare without sidewalks. The police brought him back to the house and sheepishly he showed me the letter in his hand. He knew exactly where he was headed, but wouldn't have made it there safe. It was quite a ways from our house. After that he couldn’t walk across our front lawn to get the mail unless I was watching him.
Then the writing of the checks didn’t seem to matter to him so I would write checks when he was sleeping or at Day Services so I could concentrate on that and only that. The number of calls I made to get things righted was horrendous, but finally got through that period of time. Some of my frustration was that all these people needed to speak to him in order for me to talk to them. I needed his permission---and he didn't talk so that was a trick. Finally would get permission and then they would send m a form or I would write and they would give me authority, but it all took time and energy which I was low on.
As my husband was getting a little worse, he had to stop playing cards with a group that I had found for him. He also had to stop volunteering because he would have had to be supervised one on one. So little by little his feeling of usefulness was being taken away. I fought hard to keep him feeling like an individual with purpose.
I pleaded with people to see if there wasn’t some place he could go for social and some activities. Finally three years later a group is being formed at he Lutheran Home in Wauwatosa for people with beginning stages of Alzheimer’s or dementia so they can continue to socialize and to develop and continue ordinary skills. Now, they are recognizing the fact that keeping early staged individuals busy and viable human beings is really important.
I was lucky enough to find a Catholic Charities organization that called itself the Best of Friends group (a friend from work gave me information years before and I had the information in a file and made the call) and every Tuesday and Friday mornings he would attend from 9 a.m. until 2 p.m. It cost $35 a day with lunch included which was reasonable compared to other "at home services" that perhaps would charge from $18 to $24 an hour. This particular group only met two days a week and he had to be approved.
Every day that he attended there would be an activity and he would come home with a craft. He was really proud of what he did and would have something to bring home to me. They were kept up to date with the season and the date as well as current events and had films and exercise. He loved it and they treated it as a club so there was no distinction made of an illness.
I was still working 12 hours a week at the time so I didn’t get much down time because he was there when I was working. I needed that time to keep my mind active and keep me sane. I would drop him off on my way to work and pick him up on my way home. Those four hour slots when he was at The Best of Friends group I was trying to continue to work. I ended up paying a friend $10 an hour to sit with Erv or take him with him on Thursday nights when I worked and on Saturdays when I had to work all day. It is very difficult to get someone even from official types of "at home services" to come for any evening hours at all and certainly not overnight. Erv's daughter couldn't spell me for even an evening. She did come every couple of weeks or so and take him to lunch.
The important thing to remember for me was that I wanted to make sure that the man had the dignity of each thing he used to do until he decided he didn’t want to do those particular things anymore. It was really hard for me but it seemed easier for him to give them up on his own than I thought it would be. I would just have to keep one step ahead all the time.
He had a small business and had a post office box. He had had the business and the post office box for over 50 years and he is the one who decided with my encouragement of saying it would be easier with the mail going to one mailbox and that would be at our home and so he gave that post office box up. That was a big deal for him, because not only did he have that small business, but he had worked for over 40 years at the downtown Post Office in Milwaukee as a data technician, but he handled giving up that postal box very well.
It seemed that every step in the disease brought a whole new set of problems. For example, inhibitions left and not very often, but sometimes inappropriate things would be said at inappropriate times to the wrong people. After a person has been spit upon, peed on and then he kisses a caregiver and indicates more you wonder why keep on. My self-esteem is in the cellar, but I have to patiently explain to him that that was inappropriate behavior and try not to let it bother me.
He loved to go out to eat so I kept taking him out. He would stare at people—first it was because he thought he knew them and then it was just because—he didn’t know why. I would take him out around 1:30 p.m. when there were less people in the restaurants. Out in public people didn’t understand—one rude gentleman came up and said there is the man that kept staring at me. I finally turned around and said to him he really can’t help it—he has dementia. I wonder if someone someday will say something to him when he is in the same boat.
On the other hand one manager of a restaurant said "by all means, bring him in--I brought my mother in when she was still able to get out and my staff needs to know how to act and react around people with Alzheimer's and be kind to them."
Today, even though I had filled the pill boxes and opened the appropriate day’s pills for morning and night and given them to him somehow without me seeing he has not taken some pills and hid them behind something on the kitchen counter.
When my husband was still driving he would disappear for hours and I wouldn’t know where he was—twenty dollars and a slot machine sometimes was at the end of that, but meanwhile I was waiting for a ride from him and he would forget he was to pick me up from my work. Sometimes he would go pick up Chinese and not return for hours because he would go to the wrong Chinese place. That all was really scary not knowing where he was, if he was in an accident or just couldn’t remember where he was and would eventually find his way home.
For the most part he didn't want me out of his sight. This was the only indicator that he was scared at any time--I think he was afraid of the tricks his mind would be playing on him. So after a couple of these incidents I no longer left him alone at all. I would physically see his eyes change and a strange look come over his face when he was having trouble. I asked him once after that went away how he felt when that happened and he said it was like a fog came in and was over him and then suddenly it was lifted again.
Time is a big concern—not only does he not realize what time it is, but also becomes very anxious. Anxiety came when he thought he had somewhere to be and but we didn’t. It would take him a long time to relax and finally he would forget about it. Visits to the doctor’s office would be awful. He wanted to get up and leave almost immediately. As a caregiver, it was also hard for me to get to doctors or dentists. No where is there respite service so I could see to my appointments. I did take him with me one time to the dentist and he got really anxious and wondered where I was, but couldn't tell the receptionist who he was waiting for--they finally found me and he stayed with me the rest of the appointment.
The inattentive driving became a very major concern. It caused one minor accident and another time he was stopped for going 78 mph around a semi. Very soon after that he had trouble fainting as he had for many many years so it was easy in our case that the doctor told him he didn’t want to be responsible and lose not only everything he owned, but maybe a life or two and maybe his wife’s. I’d had a driving test set up for him at the Veteran's Hospital to make it easier for one of their doctors to say he couldn't drive anymore, but could cancel that because this doctor had made the point to him. From then on he let me drive—I just kept saying that it was his turn to watch the scenery as I drove. He was a man who very seldom let anyone else drive, but he did trust my driving which was a good thing in the end.
What do you do after you’ve said for the hundredth time “please swallow”—begging, pleading, crying for him to swallow his food. He is having trouble swallowing and chewing food. He pockets it in his cheek and then chews a long time on it. The brain doesn’t tell that little flap in our throats to close or open. He had pneumonia last summer and they think he aspirated which means that he got food in his lungs. People with Alzheimer’s forget how to swallow and therefore just put it in their cheek or have to spit it out. It would take two hours to get through one meal with me trying to get him to swallow in every way I could think of—by telling him he will choke and choke he did lots of time. Until you have had food spit into your face you have no idea how scary it is thinking that this is it and yes even demeaning although the person can not help it.
The incontinence was starting to be more and more of a problem. So we were up several times a night, changing sheets, etc. I finally got him to wear the Depends briefs which was a major milestone during the day and night. When he was still volunteering at my place of employment and he would pick me up from work he would come up to my desk and whisper to me, "I peed in my pants". I would try to keep my composure and just told him to go wait for me in the car.
Some of the medication would have the effects on the bowels, too, but also he would just forget to go to the bathroom. I tried to remind him every couple of hours and that helped. He would be embarrassed, but most of the time he would let me help him clean up.
One evening in December 2005, my husband was in bed and I was just shutting down my computer for the evening. I suddenly heard a door open and I ran to the bedroom and no Erv and I could see the front door was open. I was 22° outside and I ran out and yelled his name over and over again. There he was coming around the sidewalk with the garbage can in his hand and his Depends underwear and his flip-flops with a quizzical look on his face. I hurried him in to bed as soon as I could and ran to set the alarm and close up things and went back to warm him up. Luckily he wasn’t out long enough to get really cold, but he and I were just lucky that night. We lived right off a busy thoroughfare and to just think he could have easily gone that way. I couldn’t sleep much before that, but after that I barely slept at all.
During the day I have phone calls, bills to pay, list of things that have to be taken care of, and constant watching and aware of what he is doing at all times. There aren’t many hours in a day when I don’t have to figure out what he wants or needs. Then there are the nights—long long nights where I try to get a few minutes of sleep.
People would keep asking me when I was going to place him in an assisted living situation. Everyone has opinions, but not a lot of people jumping to help—even to help get something started. I am stressed—I never thought I could get more stressed.
The hardest most emotionally riddled duty I had to do was facing me. I knew after the incident of him going outside in December I would have to have 24 hour care for him. I just couldn’t do it alone anymore.
I am a people pleaser and only want the best for anyone around me and usually put myself last and have done that for most of my life. I realized if I kept putting myself last, not only I would die before my husband, but he might not have the care that he deserves because I wasn’t there to be his advocate or be there so he wouldn’t disappear and get hit by a car.
I had to place my husband in an assisted living place in January of 2006 because I couldn’t watch him every minute of every day without going to the bathroom, taking a shower or simply sleep. He seemed to gravitate more and more to the master bedroom and take important things in there with him as he took naps, etc. He was downsizing his life so he could handle it. He also knew I was talking of getting the house ready for sale. In his infinite wisdom he knew he couldn’t handle that and wanted to go to an assisted living earlier than later. He managed to convey that to family members, also.
The only thing that concerned him was the money and one night he woke up and said, “$6,000”. I asked if he was worried about the money for the assisted living and he shook his head, yes. I then assured him that I had it covered and he relaxed and went right back to sleep.
Another thing that I had really pushed for after my parents had passed away was to get long-term health care insurance for both of us. I got it and he as my spouse got it for about the same amount of money a month even though he was older. I still had financial worries, but knew if I could get through the first three months and he qualified (sometimes they don't cover Alzheimer's)--the insurance would kick in. I simply don't know what I would have done if he hadn't qualified when I applied and I hadn't got us that long-term care.
Thankfully, I had taken out a rather large home equity loan to take care of the mechanicals, etc. for the house and set aside enough for three months of his care. I knew once I sold the house I could pay off the home equity loan and perhaps have enough to buy a smaller home or condo.
I have managed to accomplish all of those preparations and to handle more things since January 14, 2006 (the day I placed him) than I ever thought possible and coming out of it with my mind still intact and my emotions in check and my spirituality still there, but exhausted beyond exhausted.
These things were accomplished with good friends and family that stepped in and helped shampoo a carpet or took me out for dinner to make sure I got away for awhile from the noise, paint and estate sale ladies, ate or they were just in the background with me knowing I could call on them if necessary. For the most part I handled it alone with tears aplenty.
I placed him in a facility in Oregon, Wisconsin and that didn’t work out. They wanted him sedated and he wasn’t at that point at all. I was still driving back and forth from Brookfield every other day or so to see him. He was not happy—he was at first, but then he started moving his furniture out of the room. When a beloved plaster dog that I had made for him was broken not only did he get my attention, but the place itself admitted that they didn’t have enough staff or activities for him and wanted him out.
Then I placed him in a place in Cottage Grove, Wisconsin. They assured me that they had lots of activities and not only that they called it a lifestyle. That really wasn't true and the struggle was on to get them to keep him busy and not elope.
I just spent the afternoon with my husband at his assisted living home. He can no longer talk, but has been saying a few words or phrases in context a little more and has been able to sing. I took him out for ice cream and then when we came back we were holding hands sitting on a love seat and I was talking about our 32nd wedding anniversary the next week.
Not knowing whether he understood or not I was really taken aback when he suddenly started to whisper in my ear in a singsong voice, “Irish Rose” and “sweetest flower that grows” and “no one else can compare” so I started singing it with him. For minutes thereafter we were singing the song together in a whisper and he had on his bluest of shirts which matched his eyes and suddenly one tear dropped down on his shirt and I realized he was crying. I held him and of course cried, but the moment was past and he was back being the stalwart person again.
One can only imagine what is locked up in someone’s brain. He also indicated to me he wanted me to bring him some more jeans and he really looked like there was someone behind those eyes today. I feel so guilty about placing him there, but I know that is the best not only for him, but for me, but trying to convince myself of that is the hard part. I would leave there every time after I saw him a mess or as I would say during that time "a puddle" because it was so heartbreaking.
He loved to be on the go--there were times when we lived in a house without a garage that we would shovel the car out when there was a snow storm and without anybody else on the road we would make it to a local restaurant and have a meal and a night out. He loved to dance so a lot of weekends would find us out for dinner on a Saturday night and dancing. My husband worked second shift so we put a lot in those weekends.
One of the last lunches I took my husband out; he sat again looking very sad with tears in his eyes--I asked if he would miss going out and the answer was yes. I promised him I would get him out and about even when he was at the Assisted Living and that's what I did. When he was still able and he loved to go shopping so I would take him with me to Walmart or Target until it was too much for him and he just wanted to ride.
There are limited places to go for short rides around Cottage Grove so I would take him for a malt or a local orchard or on a rustic road close by or just park in a park. When he was ready to ride again he would put his hand on the steering wheel, saying in his own particular way--get going we have sat here long enough.
One of his favorite places was the parking lot of a Lutheran Church with a big tree that I parked right near and we could look off to the farm land and flowers. One Sunday afternoon when I had sung some hymns with a CD for him we were sitting in the quiet and all of these beautiful butterflies were flying around. The beauty of it was breath-taking and he had his window open and one lit on his hand--he was so quiet just watching that butterfly with a smile on his face and I knew he was content.
There were those wonderful little moments woven into those tough times.
Someone told me I was doing the best I could with the information I had and so that's what I did. I continued to gather information and to handle things the best I could and that kept me going.
This was a hard story to write as I am sitting now in my staged four bedroom home, painted with new carpeting and floors, emptier than it has been in over twenty years waiting for the painters to come back this next week for touch-up and closets and a thorough cleaning to get the cobwebs in the basement along with the spit and polish of the whole house. The house will go on the market in just over a week and it’s been a long time coming.
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The house went on the market in April and that September the house sold and I moved to a condo closer to my brother and sister in the Madison area and not far from the facility where Erv was staying.
In the two years that he was there the facility changed owners and had about 6 directors so a lot of time was spent keeping them up to date on Erv and making sure he got the care he deserved.
Activities are the best thing to keep men and women with dementia busy and not wanting to leave the facility. Redirecting people is one of the ways to keep them occupied so they don't want to leave and it was hard because the aides didn't know how to handle Alzheimer's clients.
I actually gave a talk to the staff about Alzheimer's and how to deal with the changes of the person with the disease. Staff need much more training in the particulars of the disease as the numbers become larger.
Two years after being in an assisted living facility my husband passed away in December of 2007. He aspirated again and got pneumonia and was down to 120 pounds or less and just couldn't fight it anymore. He had the most wonderful faith--and that last week he was seeing someone that we couldn't see--his eyes wide open. The Regional Director happened to be there the day we found out that he would be at peace by the end of the week. She turned on some Christmas Music for him and "O Holy Night" was on and she broke down when she told me that he looked straight at her and mouthed the word "HOME" to her--not Holy, but Home. She knew then as we all did that he was ready to go HOME.