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.