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.

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.

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.

What I've Been Up To

Mostly I've been avoiding the heat. Today is supposed to be the worst day in what is now a 10 day heat wave. Tomorrow is supposed to be bad as well, but at some point in the day or the evening, the front that will break this up all over the East from Boston to Miami should begin to come through. They are promising temperatures in the 80s for a week starting on Monday and I can't wait.


I did get out in the morning yesterday. I went to the supermarket. But most of my shopping has been online. I've ordered books, mostly used, and quilting supplies. I've also managed to go out first thing in the morning most days for the last two weeks to pick up my mail. Once in a while it is there when I get back from doing an errand and once it got cool enough in the evening that I was willing to try to get it then. But yesterday, for example, it was over 80 degrees at 9 pm when full dark arrived.

The bad thing that happened yesterday was a call from one of the doctors who take care of Joe. He is being cared for by a practice that has a doctor or PA at Manor Care every day from 8 to 5. At this point I've had contact with two of the doctors and the PA that is assigned to him for regular visits. Joe had a swallowing and choking incident that was bad enough that they called the doctor that was in the building to come and see him. This kind of thing is to be expected, and in fact I've been surprised that it wasn't happening. I gather there have been smaller incidents, but this was a bad one. Joe is declining in yet another way.

My daughter and I are ready for what is coming. I'm feeling sad that it is happening, but not full scale grief. Like I said. this is not a surprise.

The best thing that happened yesterday was using the thread that had arrived late the day before. Now that probably sounds pretty silly, but my sewing machine just loves that thread. I needed to make massive adjustments to tension when I was doing the free motion quilting on the pillows with regular thread. This thread in the needle and the bobbin required NO ADJUSTMENTS. Which is just plain amazing.

I'm planning on a bigger "throw away" project so I can lock in my free motion quilting skills using that thread. One thing I've begun to figure out is that I need to have multiple projects going so I can sew every day. Some of the time I need to put things aside while I think about them and if that happens I need something else already in process so I can keep sewing.

I need to keep sewing. It makes me happy to be at the machine. It makes me happy to see beautiful things being made. But so much of what I'm doing is new and hard that I need to spend some time doing easier things from time to time.

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.

Dementia again

I was reading a book on my Kindle this morning. The book is LIFE IS A VERB by Patti Digh. The book is not about dementia, but the story in the early chapters was about an older woman with dementia. I found that I wanted to shake the author who is part of the family of this woman. They had to have been in denial over her sickness to have allowed her to get to the point of crisis all alone. They handled the crisis correctly, but the fact that they let it go that far without taking action just made me mad.

The early chapters of that book are actually about not seeing the fault in the people around you, which I almost find funny. But in this case the woman's family could just as easily have found her dead in her house instead of stuck in a chair she had been sitting on for a few days unable to move. And yes, I do find fault.

Dealing with dementia is very difficult for anyone involved. For one thing the caregivers don't see the changes as early as they need to, even when they are doing the best they can. We don't want that one additional change, the one that will end up changing everything, to happen. But it does happen.

I don't know if the rest of the book will be useful to me or not. The rules are filled with what I consider silly stuff, like typing on your computer with the screen off. Or just writing without editing. The stuff is silly because, as Dr. Phil would say, this is not my first rodeo. I've been journaling for years. I can write without editing on a computer with the screen up. I can write longhand for pages never looking at what I wrote. If the book gets beyond baby steps it might be useful, or not. Won't know for sure for another few days.

And then there is the question of when a book is useable on a Kindle and when it isn't. I find novels very readable on Kindles, and I have the additional advantage of not needing to find shelf space for the book after I read it. The Fire is a 7 inch tablet. That is somewhat small for most craft and needlework books. Mostly those work better as hard copy. I don't know if I will still think so when the 10 inch tablet Kindle comes out. They say later this year. I guess we will see.

Take care all.

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.

Thinking It Through

I recently read a blog written by the daughter of a woman who died of dementia a few months ago. I have been thinking about what she said in that blog. She is having a very hard time with grief. I understand that. It worries me that she is taking it so hard, but I understand it. The first thing that has to happen when one is dealing with someone who is having feelings is to acknowledge that what they feel is what they feel. And that feeling what they are feeling is both OK and real.

Her grief is OK. Her grief is real. And so is her anger.

The grief specialists say that everyone goes though multiple stages. I'm not sure that everyone goes through all the stages in order, but one of those stages is anger. It is easy to be angry when you are grieving, not just with the disease that took away your loved one, or with the loved one him/herself for dying and leaving you alone, but with those people around you who didn't step up EXACTLY the way you expected them to step up. One of the things this daughter mentions in her blog is people who called her father instead of calling her mother. Of course, her mother was an extreme case. Lots of crazy actions. Lots of aggression and exit seeking. There aren't many patients out there who have those symptoms much worse than my husband did, but her mother was several times worse and it all lasted a lot longer than it did with Joe.

The daughter's life was extremely busy when her mother was alive because of her mother's illness. They were taking care of her at home, mostly with no professional help until the very end, because of the kind of dementia she had. She just did better with family help. But that meant that in addition to going to school, and taking care of a family with two kids, and doing regular church work, she also spent several hours every day taking care of her mother. And she was exhausted most of the time.

Suddenly a huge block of time was empty after her mother died. It used to be filled so full that everyone around the patient was sleep deprived, and now that block of time is empty. One of the problems with grief is the question of what do I do now. One of the jobs of grief is to rebuild your life, but you can't rush that. You have to have the time to feel your feelings first.


One thing I've learned about helping the caregivers of terminal illnesses is that not everyone can do everything especially when the disease is dementia. I've had this problem myself supporting people other than my husband, especially when he was home and so sick. The person who can visit, can't do financial stuff or make phone calls for the caregiver, but the person who can do the financial stuff and make those hard phone calls, frequently can't visit the patient. It doesn't mean they don't care. At one point I needed people to do my food shopping for me and when I admitted my need to one person I suddenly had multiple people calling me to ask if they could do that for me. They couldn't take my husband out on outings, or keep him safe at home for me, but they could go to the grocery store and shop. Which, it turns out, was what I needed.

With some of my online friends I've seen families that mostly were absent during the disease suddenly produce a flurry of organized activity, in mass numbers, when there was something that needed to be done, and done fast. Because they knew they could do it.

Just because someone can't help you in exactly the way you want help doesn't mean that they have abandoned you because tomorrow something might come up that they would be happy to do.

You survive caregiving by recognizing this simple truth.

Take care all.

Care Conference

Yesterday I went to the care conference at the nursing home where my husband is a patient. I have mixed feelings about care conferences. I go to all of them. It is important to me that the staff know I care, but I think most of the families don't go. I understand why.

This one was pretty typical. I was there. The head nurse on the floor was there and the hospice nurse was there. This is the first time I've ever seen a hospice nurse at one of these meetings. I got some pretty good information about how Joe is doing from both nurses.

As usual most of the people who should have been there, were not. I've gone to care conferences where the only people present were the social worker and me. This time the social worker was absent. It is rare for someone from the dietician's office to be present. Someone from activities will come to the occasional meeting, but very rarely. With Joe's current condition, it wasn't surprising that activities was not at this meeting. I doubt if they are doing anything with Joe at this time. One of these days I'll be the only one who shows up.

It is all hit and miss. This care conference was about 3 weeks after the last one. They used to be every three months. I've told them there is no reason for me to go to care conferences every month especially if Joe goes into another plateau where nothing is changing. I know they will keep on keeping on with his care, and that if something changes someone will notice and call me and, if appropriate, call in the doctor or the hospice nurse. I know that, because that is what has happened in the past.

We are all doing the best we can in the current situation. And it is all good enough.

Guilt

I was going to write a post about my own guilt. Every caregiver I know feels some guilt. Rationally the healthier we are the more we realize we should not be feeling guilt because we are doing the best we can with a disease that asks more of the caregiver than most of us have to give.

Last week, there was a news story in the Lehigh Valley about a well respected man who killed his wife and then himself. She was a dementia patient. In her case probably Alzheimer's, but not necessarily. A good proportion of dementia patients don't have Alzheimer's. At some point he promised her he would never place her, that he would take care of her to the end at home. And last week, that promise almost certainly caused the murder/suicide.

The reporters have been searching to find out if he was taking advantage of any of the support groups out there. It looks like he was trying to do this totally on his own. There are probably 4 or 5 face to face support groups where you can just walk in. Meetings are "advertised" in multiple ways. If you know such things exist, they aren't hard to find out about. There are also multiple support forums available online. He almost certainly wasn't lurking, much less posting, on any of those either.

My own support groups have always been online. I don't know how a caregiver survives without them. And, in the case we are discussing, he didn't survive without them.

There was a recent op ed piece in the paper by someone who knew him, possibly very well, in better days. But it was quite obvious that although the writer knew and respected the man, and to some extent the couple, that he knew nothing about what it is like to care for a dementia patient. Especially a spouse.

One thing. I don't say that caring for a spouse is easier or harder than caring for a parent with the disease. But it is DIFFERENT. Pain is pain. Grief is grief. Everyone involved in this set of ugly diseases feels pain and grief. But a spouse losses their support system along with the disease. Frequently there are money issues that children don't experience. The person who did the other half of the work around the house is no longer doing it. The person paying the bills, making the meals, cleaning the house, taking out the trash, changing light bulbs in the ceiling fixtures can't do those things, and they fall on someone already stressed with the rest of the the caregiving issues.

In the case of the couple we are discussing, when the crisis came, all of the options other than immediate death were gone. And most of the nursing home placements I am aware of occurred during a crisis of some sort. He had closed that option off early on when he didn't think it would be necessary. He had made a promise that he could not keep, almost certainly because of guilt. And as a result both of them are dead almost certainly because of guilt.

Update on Joe's Condition

I just got the call from hospice. They will be returning to take care of Joe again. I'll be signing paperwork later today.

In addition to the feeding issues from 10 days ago, it looks like he had a stroke. That might have been 10 days ago, or it might have just been a couple of days ago. We really don't know. But the doctor is pretty sure there was one, and he wants hospice back on board.

Joe is also having more serious feeding issues from what was going on 10 days ago. Then he just didn't want to eat and wasn't eating much. He has been assessed by a speech therapist and is now on pureed foods and nectar. And he is having swallowing issues.

All of these symptoms are new from the time hospice left because there were no new symptoms. The federal rules for hospice for dementia patients do not make a lot of sense. It is not unusual for dementia patients to lose hospice one or more times before they die. And that is just frustrating, not just for the family, but it turns out for the nursing staff at the nursing home. Both of Joe's regular nurses have sounded like they could not understand why hospice wasn't on board as these changes happened over the last 10 days.

Changes

I guess it is synchronicity. I write a post on the Kindle Fire and the iPad 3 comes out the same day. I write a review of the book HARD CHOICES and I find that pretty soon I'm going to be making them.

Patients with vascular dementia go on long plateaus. Joe has been on one for a long time. Last Thursday it changed. They called me after he didn't eat his second meal. The one symptom of stage 7 dementia he did NOT have was a steady weight loss. But that looks like it will change. He is still eating some, but not enough. If he hasn't already lost weight, he will start doing that if this goes on.

This is day 5 of the new "normal." I won't have any real information until another week, or two. There is a care conference tomorrow afternoon, so I'll have more information then, and maybe even some idea of what they think is going on. At this point, after only 4 days, there is no way to know if this is a new plateau or just something that is going to last a few days.

Two weeks ago hospice left mainly because he wasn't losing weight. So they did all of the paperwork to leave. And in a couple of weeks they will do all of the paperwork to come back. ...[sigh]...

Hard Coices for Loving People

Sooner or later, if you are taking care of a person with a long term terminal illness, which dementia is, you are going to be faced with end of life decisions. I suggest you take a good look at those choices as early as possible so you make them long before you need to make them. I suggest you read this book, think carefully about it, and decide what you are going to do so when the phone call comes asking you about these things, you already have the answer that you made when you had time to think it through.

In fact, maybe everyone needs to read this book and think it through early.

The book is HARD CHOICES FOR LOVING PEOPLE by Hank Dunn. You can read the book for free here

http://www.hardchoices.com/

Or order a single hard copy from them (the publishers) or from Amazon.com. If you are an organization, you can order multiple copies on a sliding price scale and the publisher will even print your organization's name on the back cover.

Hank Dunn was a hospice chaplain and he wrote the book both from the point of view of medical decisions but also from an ethical point of view. They are hard choices because they are the choices between life and death, and about letting someone go when they time comes. It clearly explains when you do certain things, including hydration and feeding tubes, and when you don't. It clearly explains when you are actually hurting the dying person when you would take it for granted that you are being kind. And armed with the truth that doctors don't realize you don't already have and rarely explain well during crisis, you can make the right choices for you.

The author does not take it for granted that he knows what the right choices for you and for that particular patient at that particular time are. He gives you the information so you can make them for yourself.