Dementia Timeline - First Anniversary of Joe's Death

This is my favorite photo of a very young Joe, on our honeymoon. 

Tomorrow will be the first anniversary of my husband's death. In reality he had been gone from me for a long time. The man in the bed, slowly dying, had not been my Joe, my husband, for a long time.

They originally told me that it was unlikely that Joe would live beyond March 2011. He had been in the nursing home quite a while at that point. He didn't actually die until August 1, 2012.

I was forced to place him for his safety and mine on July 1, 2010. He had spent two hours one day late in June trying to escape from me. He had no idea who I was but he needed to go home to his wife and children, and I was keeping him from doing that. He spent 3 days in a local hospital while they tried to determine if there was anything they could do for him, or if it was just the way his disease had progressed. And then the nursing home.

In November 2010 there was a crisis that he never came back from. Hospice was on board by that time. He became totally bedridden not long after that. He continued to decline and then, he plateaued, more or less. The decline slowed down, but he did continue to decline.

There are stages in dementias. And Joe died at the last possible stage -- 7F. There is no 7G. By the time he died he could not hold a sitting position, or even hold his head up. He could not smile. He could not say even on word. He literally did not know that someone was standing next to him, or interact with that someone at all. I was told that he had stopped interacting with the nurses and aides who physically took care of him or fed him.

And I started mourning way back in early 2011 when most of the interaction stopped.

During the last week of his life I went numb. You survive this kind of death of a loved one by never expecting the death to actually come, and I did that. So when it happens, you go numb. Or at least I did. I'd done what crying I was going to do months before, years before. I stayed numb until I once again found myself, alone in the house with no one in it but me, after the visit to the cemetery.

And then I began to work on my grief. There were some surprises. As I read the widow books I discovered that I had already done a lot of the things new widows do. Most of the financial stuff was already done. Partly because his time in the nursing home got so long that I had to do a lot of financial things you generally don't do until after someone dies. And I had already begun to build a new life.

There had been changes in the master bedroom. A new bed was purchased before he died because the old one was in such bad condition that it had to be replaced. The bed was a new size, because I was alone, and was miserable in a King Sized bed. A sewing area had taken over the once empty area near the bay windows. I had never bought the reading nook furniture for that area. Most of the rest of the house has stayed the same. Some pictures were changed out in the dining room, but I haven't panted the house again yet. And over the last three years my quilts have gone up on the walls so I can enjoy them.

I had begun to find widow friends to take the place of the couple friendships that always go away when the couple doesn't exist anymore. I was surprised that I actually made some couple friends after he was placed and that they included me and another widow in some of the things they do. But I wasn't surprised that the other couple friendships went away. My mother was a widow most of my childhood, so I knew how that kind of thing goes.

So after a couple of weeks I picked up the threads of rebuilding my life. Now, a year later, I'm mostly doing OK. I've been working on my physical conditions. I did dental work, got needed medical tests, and got myself a shingles vaccine early on. This year it has mostly been trips to the chiropractor to fix stuff that has been part of my life since I was very young. Progress has been slow, but there has been progress.

Today, the last day of my first year of widowhood seemed to be a good day to take stock. I've been journaling and now I've blogged.

Take care all.

Dementia Timeline - Again

I haven't written about dementia since last August. But today is the third anniversary of the day my husband was placed in a nursing home. He had spent the previous 3 days in the hospital. They checked him out to make sure that there was nothing that could be fixed before he was placed. And the decision was that what had changed for him was just the normal progress of the disease.

It was very hard placing Joe. Two weeks earlier I truly could not imagine needing to do it. But one thing I have heard from other caregivers is that almost all placements happen much later than they should. If you are thinking about placement, it is probably a lot later than you should have started thinking about it.

Looking at how things progressed I would not have been able to continue to take care of him. Within a week or two of placement, Joe as looking for corners to urinate in because he could no longer figure out where a bathroom was, or why he needed to go there. The nursing home was prepared to deal with that, but I would not have been able to.

He also began to pace 20 hours at a time. No single person could deal with that either. We all need to sleep.

 He was already losing a great deal of weight when he was placed. If he had stayed home he would have died from the weight loss that I was not qualified to deal with. The nursing home got the weight loss stopped and plateaued for over a year before even they could no longer reverse what the disease was doing.

I always knew logically and rationally that placement was what had to happen. I'm beginning to accept it emotionally now as well.

Grief Update

This is the time of the third anniversary of when it became obvious that I could not keep Joe at home with me. I'm still twitchy over the fact that it is almost 9 pm, and it is still light outside. I've lived in places further north where it is still light in June and July at 10 pm. And I've lived in places further south where it gets dark a lot earlier in the Summer than it does here, but also doesn't get dark as early in the Winter.

Still during that last month at home, the light affected my life, and the way I could take care of Joe. He would get very tired around 8 pm and need to go to bed. But during that last month he almost always woke up an hour later, and got dressed for the new day and came to find me at the other side of the house. Getting him to get undressed and back into bed got harder and harder during that month, but if I had not succeeded I would not have gotten any sleep at all.

He also got more and more agitated as the afternoon progressed. During the last week, just keeping him in the house became almost impossible until on the last full day he was home he got past me and went outside, without shoes, to "go home." He didn't recognize where we lived as home anymore. He hadn't known who I was for a couple of years by that point.

He was in the hospital over the July 4th Weekend in 2010, and placed during the weekend. He was placed because an ER nurse recognized that it was no longer safe for him to be home with me. Not safe for him. Not safe for me either.

He went to a very good nursing home. You have heard stories about nursing homes. Hear this one about a nursing home that did an excellent job of taking care of my husband for the last two years of his life. There is no way I could have done what they did. He actually got away from them once too. It took 6 people to gently talk him back into the building, into an elevator, and up to the locked dementia floor. He spent several days trying to get out of that floor, but it wasn't possible for someone with dementia. The difference was that they could let him try until he got tired of trying.

I know they were gentle when they talked him back into the building because I saw them do it with a different patient. I know there were 6 people involved because one of those people told me how many there were.

Within a week he was walking up and down the halls 20 to 24 hours a day until he would collapse in exhaustion. Then they would put him to bed. They could let that happen because when their working day was over they could go home and go to sleep. At home I would not have had that option.

After I placed Joe, I spent two weeks dealing with sleep deprivation. I decided that if two weeks of lots of extra sleep and lots of extra just taking care of myself weren't enough, I'd go to the doctor, but right on schedule my eyes and my body began to stop hurting.

This was also when the grief started. All caregivers grieve the loss of parts of their lives while they are caregiving. They lose friends, and even the possibility of friends. They lose the couple thing. They lose all of the stuff they planed to do which can't be done anymore. But once Joe was placed, there no longer was any question that it was all going to be over, and final, and quite soon.

The surprising thing was just how long it all took.

Take care all.

Grief Update

It will be 6 months since Joe died in a few days. Actually a couple of weeks. I seem to need to do an update here.

There was someone who commented on a post from the month or so after my husband died who took exception to the idea that anticipatory grief did not exist. Several of the books I read took it for granted that you don't start grieving until the person dies. It was obvious to me that she is dealing with caregiving for someone with dementia, or one of the other diseases where the care goes on for years or even decades. She sounds like she is in the middle of anticipatory grief.

I totally agree with her. I've been there myself. I was fully in mourning mode for at least a year to 15 months before Joe died. By the time it started there no longer was any interaction with him because he had lost the ability to interact in any way. But there was plenty of grief even before that.

You grieve the loss of the life you thought you were going to have. You grieve the loss of "the couple" thing, being part of a partnership. You grieve the loss of a social life, in my case it was an almost total loss since my actual contact with other human beings, and not just Internet friends, tended to be limited to the person at the cash register, or the person serving me a meal at the local diner. That went on for a week or two at a time, and repeated for a couple of years.

When the death finally comes, there is more grief, but there is also relief, and guilt that you are feeling relief. It doesn't matter how good a job you did in the caregiving, because with some diseases, and dementia is one of them, failure is the only possible outcome. In my case there was also numbness.

I had chosen life when my hands on caregiving days were over because my husband was placed in a nursing home when it was no longer safe for me to keep him at home. Because of how long he continued to live, he would have had to be placed because I would not have had the physical ability to take care of him once he was totally bedridden and could no longer get out of bed even to sit in a wheelchair.

I had chosen life, but it took me quite a while to move on that choice. I made small, tiny changes to my life, and slowly they have begun to show up as rather large changes.

I look back and I see how much better I am than I was even 6 months ago. I look back and I can't quite see when the mourning started, but I'm glad I chose to deal with the pain and the sadness and the grief when I did, because I seem to have come out of it almost completely.

Most of the time, these days, I'm happy. Life is full of interesting things to do, and interesting people to do them with.

Take care all.

More Reviewing

I did more than quilting during 2012, and it occurs to me that I ought to look back at the year for that as well. But first, a picture of how I look today. It isn't easy to take a photo of yourself. There is no way to see how it will look while you are taking it.

Joe died on August 1st. I'd been grieving for a couple of years by then. It started when I placed him in the nursing home in July 2010 because I could no longer keep him, or me, safe at home. Everything changes when you realize that your husband is not coming home again. All dementias are terminal, but that is not something I spent a lot of time thinking about when I was the active caregiver. With him in a nursing home my role changed. I was his advocate. I needed to make sure that he was safe and taken care of. But I wasn't the one doing the care anymore. But more than anything, I knew that the end was coming. No way to hide from that.

And when I was home the house was empty. After 3 or 4 weeks when I didn't have a second to myself, suddenly there was all this empty time to deal with.

About a year later I realized that for all intents and purposes I was a widow. I didn't have a partner to share my day with. I didn't have someone who needed a lot of care either. There was just me and I needed to spend some time figuring out who I was and what I wanted out of the next stage of life.

There was a time when you really didn't have a next stage of life at 69, but in this world I could easily live another 30 years. There is no reason to waste that kind of time.

Up until Joe's illness got very ugly I was a digital scrapbooker, but I just could not do that anymore. I'd worked a lot of the old pictures when current life got sad, and I didn't want to do any more of it because it all made me sad.

I was in art school in both high school and college, but I didn't like what my work looked like next to others who had a lot of talent. I put down the paint and brushes and didn't pick them up again over the next 50 or so years.

Sewing clothes is just plain a waste of time these days. And when I did it I did it for all the wrong reasons. You can't save money sewing clothes in our world. The things I remember making were all special things where I enjoyed the process of sewing the garment.

I'd done some quilting, mostly by hand. I knit and crocheted stuff, but back when I could have used a community to share it with that community did not exist locally, and there was no online back then. I did a lot of very complicated cross stitch, but you would never have known any of it looking at my house.

One of the first things I did was locate some of my "stuff" and consider putting it out. I knew that I'd need to change the way the house looked so it was MY house instead of OUR house.

I knew I needed an artistic outlet. I've always had some kind of artistic thing going on.

What happened during the last 18 months was that I began to move forward in a lot of areas of my life. I joined a small bible study group, which meant that I began to have a social life. I even hosted a few of the meetings at my house. Baby Steps. I met with friends for lunch, and occasionally for dinner. Dinner is harder because I don't drive at night.I joined a church. I bought the first sewing machine and then upgraded to one that better fit my needs. I began to make things that I liked the look of.

I began to live.

The Bed

One of the things widows do is make changes, generally slowly. In February 2012 I was forced to get rid of the king sized bed and replace it. The mattress had just worn out. I bought what we used to call a double and what they call a full sized bed now. I bought new sheets for the bed. And I turned two pillow tops that had been finished for years, and even decades into pillows. The two pictures had been three when the bed was larger, but that was all I managed. The blanket was a single blanket in a quilt cover (aka duvet cover).

In early March I finished the RIME quilt. This was another project that had been sitting around for decades. RIME was a pre-Internet echoed net. You got to it through a local bulletin board. One of the conferences was a stitching conference and we decided to exchange friendship blocks. Most of the blocks were signed in 1994 and 1995. It was machine pieced and hand quilted. The hand quilting didn't get started until 2010 and didn't get finished until just before this photo was taken. I was working through my UFOs and getting some older stuff done.




In April I got the quilt on the wall above the bed. I also located the cross stitch fan I'd finished up some time in the late '90s when I was living in California. And now the bed had 3 pillows.











I started making a bed scarf in late May. I like the look of something at the bottom of the bed. I quilt so I wanted something quilted on the bed, but not a full scale quilt. I've never slept under an American style quilt. This is the first block that got finished. And pieces of two more.

This is actually just a mock up. The bed scarf top was completed when this picture was taken except for the borders. I just laid the blocks down on the fabric the borders would be made out of to take this picture in late May.

In July I was doing stitch in the ditch to stabilize the bed scarf, but I put it away while I learned how to free motion quilt.

I made some pillows. I worked on a couple of practice quilts and I finally took the bed scarf out and quilted it.

And then it sat again because I needed to learn how to bind quilts properly. It is still sitting and waiting, but I will be getting to it soon.

In the meantime there have been some other changes. And this is the widow thing. I've always slept European style. That means with a quilt cover over a blanket. My quilt covers are sheeting and they take the place of the top sheet. They get washed along with the bottom sheet every week just the way a top sheet would. My mother made the decision about how a bed was made when I was a baby. It was the way she always made beds. My husband made the decision when we got married. He was from Europe and it was the only way he knew.

During the aftermath of Sandy, while I was without power and heat for 6 days, I bought flannel sheets to stay warm at night. Those shrank and I no longer could use them so I bought some good quality fleece sheets right afterward.

Those fleece sheets (from QVC) were like sleeping on a cloud, and I began to wonder what it would feel like to use the top sheet instead of the quilt cover.

It has been 3 weeks now. I LIKE top sheets, but there is a problem. The single blanket that worked perfectly in a quilt cover doesn't work as well with a top sheet. It is too narrow. I've ordered a new full size blanket from Kohl's. Stay tuned.

There is the bed scarf waiting for its binding in the last photo. I'm also considering a real quilt, maybe for the summer.

Hum... 

The day after Thanksgiving

I planned on writing this on Thanksgiving, but the day got away from me. I went to friends for dinner and had a great time there.

And basically that is what this is. An update on where I am.

Joe died on August 1st, but he was gone from me a lot earlier than that, so I began the grieving process even before I placed him in a nursing home. I had no choice about the nursing home. My experience is that most nursing home placements of dementia patients occur during a crisis. His was not an exception. The day before we went to the hospital, he took off. He got away from me after close to 2 hours of my putting my body between him and the door. I could no longer keep him safe, and I could no longer keep me safe. At the hospital the ER nurse made the call. I could not take him home. It would not be safe.

Many widows come home from the funeral and are suddenly alone in the house. I had that experience when Joe was still alive, but in a nursing home. My daughter and I had supper at a restaurant, and she got into her car and went home. I went home and suddenly, after 5 days of too much to do and no time to think, it was all done. And now what? Some of my grieving started then.

Some of it started after Joe's November 2010 crisis. He was never the same after that crisis. From then on he was bed ridden and his language skills started the fast slide to no words at all. In March 2012 he had an even worse crisis. Up until that time even if he couldn't talk to me, he did know I was there if he was awake. He mostly wasn't awake when came to visit him, but occasionally he was. Starting in March 2012 he did not know I was there when I was standing right next to him.

Each of those times I went deeper into grief, and started working out what I actually was feeling. The practical aspects of becoming a widow were also done so early that there was nothing left to do once Joe died in August 2012.

So right now, even though it has only been a few months, I'm pretty far along in the grief process. I've started rebuilding my life. This blog was part of that. There is going to be a lot more daily life and a lot more quilting here than grief stuff. But I know that one of the things I am thankful for is that when I needed to pay attention to my grief, I did pay attention. One thing I know is that if you try to stuff it down, it does not go away. It just gets worse.

Take care all.

Almost a Week

It has been almost a week since I wrote. I'm doing a lot better. I've been taking care of my health issues. I've been seeing a chiropractor more than once a week since just after Joe died. I get a lot of back pain and it controls what I can and can't do. I still get into a lot of pain when I've been standing up too long, but too long is just a bit longer than it used to be, and moving is a lot easier than it was a month ago. I go down to one visit a week starting next week, and I start massage therapy on the same day. He hinted at some exercise therapy, but not quite yet.

I can tell I'm making progress when he works on me. Things that hurt too much to even try two weeks ago are only mildly uncomfortable today. And I had the strange experience on Wednesday of leaning on a counter and having the pain just go away when I was at a checkout at a store. I tried it again in a different store half an hour later and it happened again.

I've been working the grief books. There are several that I like, for different reasons. WIDOW TO WIDOW: THOUGHTFUL, PRACTICAL IDEAS FOR REBUILDING YOUR LIFE by Genevieve Davis Ginsburg, MS is on my Kindle. It is an older book written in the 90s by a widow, who has been there. She was a family therapist before her husband died and it colors the book. It really is both thoughtful and practical and it really is about rebuilding your life. She talks about the early stages and the feelings, grief and anger you feel. But for every chapter about that, there is one about dealing with the financial issues, or about how you handle and when you handle, emptying the closet. And why you do it when you decide to do it, and what it means.

There was one point when she was discussing removing wedding rings. Because of allergies I haven't worn a ring, watch or earrings for 40 years, but she said something that just hit me. She said that there will come a point when you don't feel married anymore. I suddenly realized that because Joe was unable to react to my presence for a year or more that I'd gotten to that point months ago. I had stopped feeling married. And that was perfectly reasonable under the circumstances.

I read this book about a year ago the first time, and again in the last month. It was useful then and it was useful again, to some extent in different ways. I recommend WIDOW TO WIDOW.

SEVEN CHOICES by Elizabeth Harper Neeld, PhD is another older book about widowhood. It is also a book that I read, and worked part way though some time in the last year. Like Genevieve Davis Ginsburg, Elizabeth Harper Neeld hates the entire idea of stages of grief. They both agree that you will feel all of the emotions of the classic stages, but both feel that you will feel some of those emotions at any point in the grief process. But Dr. Neeld does see grief as a road with specific points where you will have to work on certain things to continue to go forward. She understands you might be working on more than one of them at a time, but certain things tend to cluster.

This book talks about the practical stuff too, but not in as much detail as WIDOW TO WIDOW. The focus is more on how to take your emotional temperature and decide which tasks need to be done when. And then she goes into more detail about how to do the tasks that will result in your coming to a place of peace in your life.

I recommend SEVEN CHOICES too.

I've bought two new books this week. TOUGH TRANSITIONS is also by Elizabeth Harper Neeld, Phd. She wrote this book more recently and it is about "Navigating Your Way Through Difficult Times." Grief, yes, but also other kinds of transitions. She discovered that some of what she was writing about in SEVEN CHOICES was showing up in people where there hadn't been a death, but where they had other kinds of upheavals in their lives. Because I am at a particular place in the road in SEVEN CHOICES I chose not to read forward at this time. I've read the entire book in the past and knew roughly where I was back then. Now I've moved forward on that road a little bit leaving the more difficult parts of grief behind, but needing to begin rebuilding more completely. It occurred to me that I might find more information on how to do that here. I haven't gotten very far into the book yet, but I like what I'm seeing so far.

I also bought GRIEVING GOD'S WAY by Margaret Brownley. I've only "done" two days in the book but I've looked at other sections and read a few days from the middle at the book store. This is a Christian faith based book. The other three are secular books. But Margaret Brownley's vision of grief is not too different from that of the other two authors. This book is intended to be read two pages a day. There is a reading about what you are feeling in the Grieving Body, Soul, Heart and Spirit. It is intended to take 90 days. There is a bible verse, or two, a short essay, a second short related essay on two pages for each day. Again, I like what I'm seeing so far.

I can't totally recommend either of these new books because I haven't been involved in them enough yet. But I do like them.

Take care all. Maybe next time I'll talk about the two art quilt projects I've been working on during this week.

Uncoupling

I've been writing about anticipatory grief a lot, but today I'm going to write about what happens when you start turning the corner. It is all happening very fast if you count from when my Joe died. But not so fast if you count from when I began to grieve my loss of the Joe I knew.

I've been using two books pretty heavily. Both of them are rather old books. WIDOW TO WIDOW by Genevieve Davis Ginsburg, MS is on my Kindle. It was originally copyright in 1995. I have a paperback copy of SEVEN CHOICES BY Elizabeth Harper Neeld, PhD, original copyright 1990. Both were professional counselors or teachers. Both were widowed and are writing, in part, about their own personal experiences, and also about the experiences of other widows. Both are primarily about women who are widowed, although they touch on men as well.

Both belong to the generation of counselors who hated the whole idea of the official stages of grief, because that wasn't what they experienced and it wasn't what they were seeing in others either, but both also admit that you come to a point where you begin to walk into your new life. Dr. Neeld calls it The Turn. Ms. Ginsburg calls it Uncoupling.

I got two things out of WIDOW TO WIDOW in the last couple of days that I need to write about. One was that there is a point when you don't feel married any more. That happened to me after several months when there was no longer any real contact possible with Joe, while he was still alive. It was when I truly began to work on my grief and read my books and try to figure out what was going on. I began to tell people that I was, for all intents and purposes, a widow already. And with one exception, everyone understood what I was saying.

But one thing that kept happening was that I was in limbo. I'd make some steps towards the new life, and get pulled back into the old one, because although Joe was so sick he was not making contact with anyone including the aides who were feeding him and keeping him clean, he had not died yet. Now that limbo is over, and I'm free to take those next steps into a new life.

So here I am at the point where I'm going to be reading the Parts called From Widowhood to Selfhood in WIDOW TO WIDOW and The Turn in SEVEN CHOICES. These Parts are not the last ones in either book. But both are well into the journey beyond the end of a marriage.

The Joe that Was

I've started my laundry, done my Morning Pages (I journal EVERY morning about whatever is racing around in my mind), had breakfast, tried on the new pants I bought a couple of days ago at Kohl's (one needs to go back - same brand, style and size as the other 3 - don't know why one would be smaller than the others but it is) and now I'm on the computer blogging .

I've been checking out the widow support boards online. I won't join any of them, but lurking is useful. One thing I've figured out is the reason the pros don't really understand the process of grief I'm going though is because they don't get to see people like me. The reason they don't recognize anticipatory grief, is that they don't get to see it. When they get down to the nitty gritty of exactly what the widows they do see are stressing over, it turns out to be something I did 2 and 3 years ago. 

I have no need to stress over not having Joe at home because he hasn't been living with me for well over 2 years. I stressed over that during the Summer of 2010. I am not stressing over losing the couple life. That was gone in 2009, and in part even earlier than that. I doubt if I'll stress over Thanksgiving, Christmas or my anniversary. I "did" the 50th year starting in 2010 when Joe was still home. We met on Memorial Day weekend. I didn't place him until July 1st. I remember how sad I was that he was clueless that the weekend was a special weekend. I was ALONE for my 50th anniversary the following February because Joe had a major crisis the previous November and was bed ridden, and didn't have a clue as to who I was although he was still glad to see me when I visited. His birthday two days later was almost as bad. And my 70th birthday in April would have been really bad if my daughter hadn't taken over the weekend. I've started the new traditions already for all of those things. I'm aware I need to figure out what I need and arrange for me to have what I need.

The funny thing is that Andy, my counselor, does "get" it. She has watched me go through grief, come out of what I called The Tunnel one year after I placed Joe, and start putting my life back together again.

I've been dealing with a new wave of grief now that Joe has died, but it isn't as intense as it would have been if I had not done some of the grief work when the issues first came up. I'm having some sleeping issues, some problems with my mind going round and round in the early morning (hence the Morning Pages), some general sadness, a lot of being aware that Joe now has died and that I miss him, the him that used to be, and quite a bit of trying to figure out when I actually lost him using scrapbooks and journaling.

One other thing I noticed is that the people on the support boards hate the terms "getting over it" and "moving on." I'm not going to be getting over losing Joe. I was married to him for 51 years. But I will be "moving on" because if you don't make a beginning on putting a new life together, you get stuck in the grief the way my mother did. She was still complaining about losing her couple friends a decade or two after my father died. She had failed to make other friends until I was in high school and then only one that I was aware of. She had stopped living.

I think one reason I have been doing the work of grief for so long is that I had an awful example of what happens if you don't do it. I am not doing that. Instead I'm trying to remember the Joe that was.

Scrapbooks

Grief again. I had a little set back this week. I very bad Wednesday morning. I'd been trying to move too quickly through this part of the grief process. So I've slowed down some. Spent some more time alone. Thought through more stuff.


I've been going through the scrapbooks. I did digital scrapbooking for about 5 years, part of that time while Joe was sick, but most of it before I knew just how sick he was going to get. 
 
We had a grandson to enjoy. And he is a fun kid. For a while those electronic drums were his favorite thing.

We had some great Christmas celebrations. Some pretty wonderful memories.

2007 was the last Thanksgiving in New York City, the last Christmas that was a pretty normal one. The last time I put up the big tree. Lots of lasts, but we didn't know that yet. When you are living through dementia, you don't understand how bad it can get.






By the time this picture was taken I knew where my life was going, but there was still a lot of quality of life. Joe stopped driving in May 2008. It was no longer safe for him to have car keys, so life was changing pretty heavily by then. But there were smiles and companionship.









But there were still birthdays to celebrate. And fun to be had. And joy to experience. It really is important to remember that.

When things got bad I mostly stopped scrapping. Joe had always taken the photos, except for the ones of him, and I'd done the Photoshop layouts. There came a point when he didn't understand the camera anymore.

One more loss. One more sadness.

What needs to happen now is picking up the pieces of my life. I need to look at the missing years in the scrapbooks and fill them in. I can do the last couple of years at a later time, or not at all. Mostly those will be pages without photos. Either they never got taken or they have been misplaced. I've done plenty of pages with no photos in the past. I can do that again.

Grief

All of the books are in agreement. There is no such thing as anticipatory grief. But I'm a poster child for anticipatory grief. So they are wrong. What they are probably right about is that it is rare, and that it requires specific things to have happened to have forced you to grieve well before the death actually happens.

One thing I know. My Joe died at the very end of the dementia process. There are seven stages, 1 to 7, and in stage 7, which is the last one, there are 6 phases, A to F. Joe died at 7F. There is no 7G. At the end of 7F, language is totally gone, even the last word. They forget how to smile. The body breaks down and all of the organs begin to die. The ability to come back from an infection, even with antibiotics is over because as soon as the antibiotic is stopped the infection comes right back again, and some of the time even the antibiotic can't slow it down. The ability to interact with the outside world is totally gone. They don't react to their names anymore. They don't focus on the person right next to them. They don't know you are there. And finally they can't hold their heads up. And then they can't swallow, eat or drink and then finally they can't breath.

Most of my friends who are also dementia widows never experienced stage 7. Most patients never get there. Some infection or some other, equally terminal, illness takes them in stage 6, and even occasionally earlier. The patients are still talking when they get to their final crisis. Some of them are still walking around on their own. There is still some small quality of life, some interaction with the people who love them.

You can't have a relationship with someone who doesn't know you are standing there. As long as he could smile at me, or let me hold his hand, there was something. But when those things were gone, all there was left was the pain of loss, so I started working on the grief I was feeling.

I have been talking to the hospice grief counselor for 2 years. I have been journaling. I've been reading books and thinking about what they say about how to get into the grief and work through what you are really feeling.

The books also talk about the various tasks people need to do after the funeral. Like emptying closets. I did the last of that last November and January. There are still two coats in the house because my daughter, who helped me with this task, couldn't let go of the last two coats. And that was OK, so I kept them. Or taking care of financial matters. For various reasons I had to do that early too. There literally was almost nothing left to do once Joe was buried. At this point there are only two financial things were I'm waiting for other people to finish what they need to do, and in one case I already have a good idea of what is going to happen.

They talk about having to buy big ticket items and make changes to how the house you are living in looks, and suggest you wait so you can think clearly when you do it. All of my electronics including my big TV set and my computer died within weeks of placing Joe. I had to replace them because there was no option. I replaced the bed we had slept in together this Winter because it also had to be replaced. The bedroom no longer looks like he lived there. The other rooms aren't all that different yet, but there are already some differences, and will be more. Some things have been put away. Some things have been given away and replaced. I already have a list of what should be packed up because those things are his, not mine. I've been considering repainting the public rooms for several months, and that will be a major change because the colors will change. It will also require that some things be packed up and put away, and they are unlikely to come out again.

They talk about taking a good look at what you do, who you spend time with, who your friends are and what your interests are that might be different when you are a widow instead of half of a couple. I've done that already. I joined a church. I went to bible studies and made good new friends who are not people we would have been friends with as a couple. Some of those people are part of a couple. Some are other widows. I went looking for other widows before I actually was one because for all intents and purposes I no longer was part of a couple. There wouldn't have been a whole sewing studio in my bedroom if Joe was living there too.

There are suggestions that you work through the unresolved issues in the relationship, and a lot of that has already been done too.

There has been some more intense grieving since I got the call that told me that Joe was actively dying. Numbness. Sadness. The inability to make decisions without forcing myself to focus. There are still some after the funeral tasks that need to be done. Some thank you letters to write. Some condolence cards to open. But that too, is almost finished.

I'm ready to begin to take the next steps towards normalcy. I am still spending a lot of time thinking about and feeling my grief, but I'm also seeing light at the end of yet another tunnel. I wouldn't be surprised if some of the firsts out there make me feel and think again, but I also know that I've experienced the first Christmas, the first Thanksgiving, the first time I didn't buy Joe a present for an occasion, my 50th Anniversary without him, birthdays - his and mine, with no celebration, etc. I've already made changes to how I deal with those events. I had no choice to hold off on that. I was forced to think about all of those times as they came up and deal with them. So I did.

Take care all.

Joe Running

I need to back up a bit to the day that Joe took off, with the intention to never return. He had gone on very long, two hour walks up until the previous September. He had actually brought the aide home when she took him out during the 4 months before he was placed. He had always known where home was. But that day he did not know that the house we had been living in since 2004 was his home. That was somewhere else.

This had actually been going on for several days. It would start at 4 in the afternoon and continue until he was exhausted at 6 when he would need to go to bed. He would be up again by 8 and get dressed for the next day because in July it was still light out. I'd manage to get him back into bed an hour or so later when it was dark. So I basically was exhausted because there was no rest. This is called Sundowning. It is very common with dementia patients at the early part of the last stage of the disease.

That particular day he was very agitated. He needed to go. He had work to do. He had children he needed to get home to. He had no idea who I was and hadn't for a couple of years but I was the person who was keeping him from going home, where he needed to be.

Keeping him in the house got very physical. He knew how to open the locks on the back door and the front door. He couldn't manage the slider, but he tried that on every round of the house. He would get to the door first because he was much faster than I was, and unlock the door. I'd put my body between the door and him and try to get it locked again. He would give up on that door and go to the other part of the house and try that door, and we went round and round and round for 2 hours. And then he tried to go out a window. And it took me just a second longer to get to the front door. He shoved me out of the way, and got out of the house.

It wasn't possible for me to go after him, so I called the police and Safe Return. I'd bought him a Safe Return bracelet just a couple of weeks earlier. The person at Safe Return stayed on the phone with me after putting Joe's information into the system as a person who was running away.

The police came very quickly. A neighbor who had experience with geriatric nursing realized something was wrong and stopped Joe. Her husband arrived at my driveway just as the police arrived. He got into the police car and took them to where Joe was. A few minutes later another neighbor came for me and I went up there too.

The neighbor knew what she was doing. The policeman on Joe's other arm just followed her lead. They had Joe between them. By this point he was very tired and stopped fighting them and they got him back home. My neighbor and I put him to bed. Not long after she left I realized we had made a mistake. We probably should have taken Joe directly to the hospital, but I wasn't sure. Once I knew he was out for the night, after it was dark, I called the Alzheimer's Association hotline and talked to one of the caseworkers there. She told me to call his doctor the next morning since I was sure he would sleep through the night.

Looking back, it was a good thing I waited because I needed all three days at the hospital to find the right nursing home for his situation, but it was not a good thing because Joe's situation was changing rapidly, and he easily could have woken up while I was asleep and taken off again.

In the morning I called the doctor just he got into the office. I was given "magic words" because he couldn't call 911. In PA I had to do that. I told the 911 operator, "My husband has dementia. There has been a cognitive change. His doctor wants him to have a MEDICAL assessment." Those words are important. Dementia patients frequently get taken to a psych ward, and some of the time that is appropriate, but not until a MEDICAL assessment has been made. In Joe's case the first drug they tried on him got him under control. It was a bit too much to let him be alone, so they put a one on one aide on him, but he stayed on a medical floor and wasn't taken to where the psych ward was. The ER doctor and nurse knew exactly what was going on pretty early, but they checked everything just in case. But what was happening was his dementia, and not a separate medical condition.

I didn't know it but what I experienced was just the beginning of a period of anger and aggression and the need to constantly move around. There was no way I could have taken care of him with that going on. It took multiple people, an entire staff, to deal with that and work on adjusting his medications. But all of that is another post.

Take care all.

Dementia Timeline

I've been spending a lot of time thinking and journaling about what my journey as a dementia spousal caregiver has meant over the last two weeks. It all started almost 9 years ago, in California. If Joe had died on December 18, 2003, it would have been a great shock. He was over 65 already, but I wasn't anywhere near there so we hadn't talked about retirement. He had gone to bed that night looking perfectly normal, but it was the end of normal life for me although neither of us even could imagine that.

He went to work earlier than I did, so I didn't see him that morning at home. I got up after he left although I tended to start work at 6:30, which is very early for an office job. I was already out of the house when the phone rang, in the garage getting into my car. I went into the house to pick the phone up, and it was a hospital in the northern part of Orange County, California, near where he worked. Joe had had an accident and he wanted me to come in to the hospital to be with him.

There was a lot more than a car accident to deal with. Joe's heart stopped and the car was on automatic going 62 miles an hour, on a major California freeway when he passed out. The car hit a concrete embankment and was totaled. When the police found him he had woken up, but was bleeding from the top of his head. He needed stitches on the top of his head. He had 6 broken ribs. But neither of those were the important thing that was happening. Joe's heart stopped at least twice more and possibly as many as five times before they got a temporary pacemaker into him. He had an operation for the permanent one that evening.

For the first year nothing much changed and yet everything changed. I also ended up in the hospital about 3 weeks later. It was a wake up call. We decided we would retire that summer, and we did. We decided to return East to be closer to family. I couldn't come to Pennsylvania to pick out the house, but did pick out a lot of stuff, like which house and which builder and community online. The actual purchase of the house was done by Joe and my daughter and her husband. We came across county in August 2003 and lived in a hotel for 3 weeks in September and moved in at the end of the month.

I began to notice something was wrong in December 2005. I know now that asking the same questions over and over again is a sign of short term memory loss and an early sign of dementia, but I didn't recognize that for sure until a year later. In January 2007, Joe started going to a cognitive therapist, and she essentially made the diagnosis. She told Joe's doctor and sent reports to the neurologist we went to for an official diagnosis. By May 2007 there was no question that Joe was sick with something that could not be cured, or even treated in any reasonable way.

By May 2008 I had to take the car keys away. The slide was faster after that. My world was filled with lasts. Last trip to New York City. Last social event with Joe. Last visit with the girls because pretty soon after he stopped driving I could no longer leave him alone.

The steady slide continued for the next two years. We went everywhere together. We continued to go out to eat every day at lunch until mid-June 2010. That week was the last time I could take him grocery shopping too. Things got very difficult all around and worse and worse until the day he chose to leave the house and never come back. After two hours of trying to keep him in the house he got around me, got the door unlocked and open and took off. By that point I was exhausted, upset to tears, and scared out of my mind.

He got stopped by a neighbor, and the police came quickly. It took the better part of an hour to get him back in the house, but I knew I could not do it anymore. I called the Alzheimer's Association and asked what to do next. There answer was for me to call his doctor and get him transported to a hospital, which I did first thing the next morning. The ER nurse told me it was not safe to bring him home again, and I knew that. Not safe for him, and not safe for me. Three days later on July 1, 2010, Joe was placed in the nursing home where he lived until he died.

They took amazing care of Joe at Manor Care. They didn't do everything exactly as I would have done it, but they did what I was no longer capable of doing. They kept him safe. They kept me safe.

I came home alone after supper on July 1, 2010, and I started grieving. I'd been grieving even earlier, I now realize, as the retirement I expected to have died and I still had to see other, happy couples walking past my house. I grieved for the life I no longer had. I grieved for the marriage and partnership that I'd been living in for almost 50 years. Some of it before Joe was placed, but even more right after.

I'll write more the next time.

My husband has died

Most of the people who read this blog already know that Joe, my husband, has died. It was a very long journey. He had Vascular Dementia caused by a heart event on December 18, 2003. His heart stopped multiple times and they resuscitated him multiple times. The result of that is brain damage causing dementia.

Vascular Dementia is either the second or third most common cause of dementia. It isn't Alzheimer's, but for the most part the progression and the outcome is the same. Any real dementia is a fatal disease. There are a few diseases that present like early dementia, but they can be cured, which is why the patient needs to go to a neurologist who knows dementia. It would be a very sad thing to die from something that can get fixed.

Joe spent the last 25 months in a nursing home. I had to place him when I could no longer keep him or myself safe at home. It took a whole staff to deal with him and keep him safe for the first 6 months he was there. He was under the care of Hospice for 21 of those months.

There are 7 stages of dementia according to the scale from the Alzheimer's Association. Joe was in the last phase of the last stage. He could not talk. Not even one word. He could not smile or lift his head. He was totally bed ridden for the last 18 months of his life. During the last 6 months he did not know that the people around him were standing there. By the time he died there was no quality of life at all.

The last week was ugly. Heart patients breath as if they can't catch their breath. It is called dyspnea. I'm pretty sure that is what he had and not the more common death rattle. Rapid breathing with harsh sounds. He did that for over 3 days fighting for every breath. They had him on round the clock morphine because he was obviously in pain, and it helped, but not all the way.

I have been missing Joe for a very long time. I'm sad, but I've already done a lot of grieving. Basically I'm OK.

Bad Dreams

I had a dream early this morning. I was at the beach, with Joe. My daughter was there too. And we were with some people. Just generic people, not people with names. I'd gone for a walk, and when I returned Joe was gone. He had taken off and I could not find him.

I've had dreams like this before during the time he has been in a nursing home. After all, he isn't home. He isn't here. The one time he did take off just before I placed him in a nursing home, he was found and stopped by neighbors and returned with the help of the police.

This time the dream was different. I didn't wake up crying and screaming his name. This time I could not get anyone to pay attention to the fact that he was gone. I always try to figure out what my subconscious is trying to tell me when I dream. This time it is easy. Joe has begun to decline. Hospice is not going to discharge him because he isn't declining fast enough for their rules. This time doe is on the road to dying. This time I really am going to lose him, and no one will be able to find him and bring him back.

Grief

I belong to an email support group. When we started there were 16 caregivers and their sick spouses. All the spouses had some kind of dementia. A couple of people have left the group and a couple have joined us, but basically we are the same group and about the same number of people.

I think it has been about 2 1/2 years since it started. In that time 11 of the spouses have died, one just this past week, leaving 5 still alive. Only 5. If you can call it alive. One spouse is living at home with his wife, and a second in an ALF with his wife. The other three are in either ALF or nursing homes, two under the care of hospice.

Joe is one of the two.

All of the others interact with their families and the staff around them to some extent. Joe does not.

Each time one of the spouses die, the group huddles around the husband or wife, almost as if we were physically there. The last thing I did every night last week was to check email to see what was happening. The first thing in the morning too. That is pretty much how it has gone each time. 


Some of the spouses died rather quickly, one in her sleep with no warning. Some took as long as a week after the final crisis started. A couple actually took two weeks from when things got strange.

Each time I wonder when it will be Joe's turn.

At this point Joe is sicker than most of the others were just before the crisis happened, but he is not in crisis. It could happen any time, but it hasn't happened, and it could take as much as another couple of years. And I am in limbo. Stuck half way between my old life and my new life, not able to move on. Ready to move on in many ways, but pulled back almost constantly because the old life is not yet over.

I'm working my way through another grief book. I've had this book for a while. The last few times I started it I thought it was only for those who have already experienced the death of their loved ones, and that the death be a sudden one. I read further this morning and it doesn't require a sudden death, but the author does take it for granted that the person doing the reading is dealing with a physical death. There was one small bit in the beginning stories about someone having to grieve all over again when the death took a very long time to happen and lots of anticipatory grief had occurred already. I'm pretty sure that will be the truth for me, but there is no question that I've done a lot of work on rebuilding my life already as well. I'm hoping doing more grief work will help. And maybe the book will help me through it.

I'm sad some of the time these days. I actually cried this morning and I don't cry often. But I'm also happy and the next message is going to be about my new life because there is news there as well.

Take care all.