Friday, May 18, 2018

Contentment Found in the World of Dementia




This photo was taken by Corrina, one of the activity leaders at the care home. Below the photo she included a beautiful narrative that described how his hands provided care for others throughout his career, lovingly held hands with his sweetheart, provided comfort and companionship to his beloved black lab, and enjoyed taking the wheel of his favorite sports car.

It's hard for me to explain how powerful this is. I cried when I saw the photo and read the narrative. Corrina had captured the essence of my sweetheart. I will cherish this forever.

It's been quite a while since I posted and a lot has happened. Hard to know where to begin....

When I think back to all of the changes over the last 7 months, it makes my head spin. Last October was the crisis the resulted in Jim being hospitalized and then transitioned to a care home. Following that, I quickly realized that I needed to move. The home we built for retirement was no longer where I belonged. Every where I looked, it was a sad reminder of what we had lost. And I don't in any way mean material possessions, I simply mean the shared retired life that we had so looked forward to together.

The size of our home, the maintenance, upkeep, and expense were just too much for me. Fortunately our house sold relatively quickly. The hardest part was going through everything and deciding what to keep, sell, donate or throw out. It was a challenge because I knew that no one could really help me with that process; it was something that needed to be decided upon by me alone.

In the middle of the transition of moving, I managed to get sick. I fought it as best as I could, but I ended up a couple of days flat in bed, just too sick to move. I think the stress of it all was catching up to me.

The condo I purchased is just the right size for me alone. About 1000 square feet. I'm starting to feel settled. The last of the boxes were unpacked this past week. The community is a friendly and caring one. At the same time, it never feels intrusive. There are weekly social hours, occasional pot luck meals in the community room, and occasional spontaneous events/activities.

Jim continues to do well in the care home. Technically of course, it is a nursing home. But the love and care that I see there day after day inspires me to refer to it as a care home. It's not perfect of course, but overall the staff are simply amazing. So kind and caring, and I know that he is in good hands when I am not there.

I learned the other day that during the late evening shift, when many people are already in bed, Jim is doing his laps around the unit. When he tires, he simply goes into the first bedroom that he sees. He becomes agitated when he finds that someone is in bed. He likely is thinking that the person is in his bed, and has given a few folks quite a fright with his threatening behavior.

Depakote has been added to help with the agitation that he is experiencing at night. In addition, I'm reassured that staff are attempting to be proactive and doing their best to prevent and redirect.

Jim's language is fairly limited. Usually just a word or two that is intelligible. Once in a while he may string together a few words that are sensical, and that is always a pleasant surprise.

Yesterday a family member told me privately that Jim walked into her mother's room. He walked up to the resident (she is in a wheelchair), patted her shoulder, and said "you'll be OK". That's my sweetheart! The family member was so touched by his kindness. And I was so grateful that she shared that with me!

I haven't felt this settled in a long time. I think back to a little over a year ago when I was so stressed, I remember worrying that I was likely doing physical harm to my body. To live each day with high stress, fear and anxiety.....I'm not quite sure how I managed. Except to say that somehow in the middle of a crisis in our lives, we simply put one foot in front of the other. Because what else can we do? So we just do it.

But that is all behind me now. I'm happy and content because Jim is doing just fine. Certainly his disease is progressing, but he is in a safe haven. A place where he believes is home! And I still get to see him every day. He still knows me, is happy to see me, puts his arms around me and still says "I love you Carole".

It doesn't get much better than that.

Thank you dear readers for stopping by. And thanks for your patience for my lengthy absence. This journey has been a difficult one, but each one of you have helped to make the journey a little bit easier. And for that I am grateful.






Wednesday, March 14, 2018

Brain Failure

We've all heard the medical terms heart failure and respiratory failure. And it is crystal clear exactly what these terms mean.  I read a blog post the other day that offered a different term for dementia: brain failure.

Elaine Eshbaugh, PhD is a university professor of Gerontology and Family Studies at University of Northern Iowa. She is smart, spunky and funny. Best of all, she is the author of an outstanding blog called Welcome to Dementia Land. She offers insight, knowledge and an insider's look at the world of dementia, sprinkled with a touch of humor. This is her post on the concept of referring to dementia as brain failure.

She makes the point that for the uninformed, dementia is thought of as a problem with forgetfulness. Of course readers of my blog know that problems with memory barely scratch the surface of what dementia is all about. She suggests that for a fuller appreciation of the debilitating nature of the disease, that we should call it what it really is, brain failure.

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It's been a while since I have posted, and a  lot has transpired. I received a purchase offer on our house. After a bit of negotiation we settled on a fair price. I am purchasing a condo in a village not far from where I live now. The condo is small; about 1000 square feet. Just right for one person! The building is on the bank of a very active creek; it runs every day of the year. There is a small balcony off the living area overlooking the creek. Just beautiful!

Closing on both places will be in about 6 weeks or so. Lots to do before then! This is a major downsize for me, but I welcome the opportunity to live in a smaller space with less possessions. The Home Owner's Association monthly fee covers landscaping, yard care, snow removal, etc. There is an underground garage for parking with an elevator to the building's 3 floors.

The "walkability" of the village is very good. Grocery store, post office, library, all within an easy walk. There is a beautiful park in the village with lots of trails for walking. In addition, there is Baltimore Woods which offers acres of wooded hiking trails.

It will be good to be out from under the major expense and responsibility that come with owning our current home. If Jim were able to understand and speak to me of all of this, I know that he would be happy for me, and that he would reassure me that I am doing the right thing.

After last month's fiasco of the change in his medication dose, he has stabilized back to his baseline. I spoke to the Director of Nursing and informed her that I did not want Jim's medications changed. She was very sympathetic to what I said, but insisted that it is out of her hands; the government regulations require them to do this. She agreed that Jim needed to recover his stability, and that nothing would be changed "for a while". She also said that she would call me first, before any changes were made. I'm struggling with this. Someone suggested that I threaten to take him out of there. But I would never make that threat because I would never do that to him!

Jim's speech continues to be very minimal. One or two words. But his beautiful brown eyes speak volumes to me. As I see his face and his eyes light up when he holds me and kisses me, I know that I am a very fortunate woman. I have the love and devotion of my sweetheart. Doesn't get any better than that.

I'll leave you with a picture of the view from the living area of the condo I am purchasing.

Thanks for stopping by; I so appreciate each one of you.


Thursday, February 15, 2018

Instability Unexplained....






But eventually I understood. My eyes are filled with tears as I write this. As I have written before, Jim is receiving the very best of care from the wonderful staff at the care home. However, over the last couple of weeks I have noticed a significant change in Jim, and I struggled to understand. I absolutely understand that dementia results in a decrease of function, however what I was witnessing I had a hard time understanding.

Jim became more anxious, pacing quite a bit, and his sleep was disturbed. His anxiety was so high that he was unable to sit at the table for a meal for more that a few minutes. He paced a lot; and while walking is good, his pacing around the unit was clearly unsettling for him.

Jim is still ambulatory, for which I am grateful. His gait is quite slow, but he is able to walk around the unit without any assistance. Two days ago, when he was in a highly agitated state he took a walker (unoccupied) and started using it to walk around the unit. It wasn't because he needed it, but seemed like more like a compulsion to him. He walked for about an hour using the walker, then finally set it aside to continue his usual walk.

It was a very difficult day for Jim. When he saw me arrive on the unit he was happy to see me. But that lasted all of 10 seconds. He then started to rant. With his very limited ability to speak words, he still managed to say "What the f*@# am I doing here?". It is the most words I have heard him string together in a long time. He was clearly upset. Upset at me, upset at anyone he saw. What was happening?????

It turns out that the federal government, in its infinite wisdom, has regulations for nursing homes that require periodic GDR, or Gradual Dose Reduction of medications in certain classifications. This is the link to these regulations. The regulations include SSRI's and antipsychotics. Jim has done so well at the care home that staff were hesitant to attempt a GDR with Jim. But they had to.  If regulations are not met, the federal government imposes sanctions. 

So, with trepidation they decreased his citalopram by half on 2/1/18. I did not know they were doing this. In retrospect, I have mixed feelings about the fact that they did not tell me about this until after the fact. It obviously did not color my view of what was happening to Jim with the GDR. 

Jim was placed on the citalopram almost a year ago (when he was still at home) for anxiety. It is typically used to treat depression as well as anxiety. Jim had a good response to it. I spoke to the Director of Nursing last night. She said that they are now able to clinically document Jim's setback with the reduced dose. They have restarted his usual dose as of last night. It will take at least a week or two to get him back to his baseline. 

Unfortunately, they will need to attempt a GDR with his Geodon as well. Regular readers will remember that Jim was placed on the Geodon, an anti-psychotic, while he was at home. It helped with his hallucinations and delusions. But like the citalopram, the Geodon will need a trial dose reduction at some point to see how he does. I think I know the answer to that one...

Before they attempt the Geodon reduction, they will give him some time to stabilize on his citalopram. I know that the only reason I was able to keep Jim at home for as long as I did was because of the help that the citalopram and Geodon provided to Jim. Without it, he would have been placed much sooner. 

The hardest part for me is to think about Jim suffering all because of federal regulations. I totally understand that the government wants to avoid "chemical restraints" as a substitute for non-chemical measures. And I totally get that there are some situations where it is just easier to give a pill, instead of addressing the underlying reason for someone's distress. A good example would be boredom. We know that by providing meaningful activities for folks with dementia it goes a long ways towards preventing negative behaviors. The care home does an outstanding job of this, with regular activities scheduled throughout the day, for those who wish to participate. 

The citalopram and Geodon allow Jim to be able to participate in these activities. The last week or so he has not been willing to participate in activities. As I was not aware of the dose reduction, I had a hard time figuring out why. Now I know. 

Jim never asked for any of this. This dreadful dementia has robbed him of a normal retirement with his sweetheart. I am his protector, his advocate. It tears me apart to think of what he has gone through the last couple of weeks, all because of federal regulations. In some ways I'm kind of glad that I didn't know about the dose reduction ahead of time. It would have tortured me the whole time, knowing that  a purposeful action had the potential to impose suffering for Jim, causing increased anxiety and agitation. 

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On a totally different note, my elderly mom was hospitalized for pneumonia. She is now back in her home recovering, but requires a lot of support as she slowly gains back her strength. I've been a little stressed doing double caregiving. I have several siblings who can help with my mom, but only one who is retired. It's been a juggling act, taking care of Jim, my mom, and still trying to do some self-care so that I don't fall apart. 

Speaking of that, my weekly appointments with Dr. M. continue. She is my strongest advocate! It is amazingly therapeutic to be able to speak so freely within a "safe place". It helps me to sort things out, to process what is going on in my life. I can tell that I am more stressed than usual. I feel it physically in my body. So grateful to have her in my life, helping me to navigate this next chapter of my life. 

Thank you dear readers for stopping by and listening. It does my heart good to be able to write about what is in my heart and on my mind. 

Friday, February 2, 2018

Dementia Update

It's cold and snowy today. I'm scheduled to meet with Dr. M. this morning, but I will need to postpone it until next week. It's nerve-wracking to drive when the roads are this bad. The plows and sanders are out, but with the rate of snowfall (which is scheduled to continue until tomorrow morning) and the very cold temperatures, the driving will be hazardous. Especially on the hilly terrain that is part of my route.

I recently updated Jim's progression of his dementia, which you can view here. The care home continues to be very responsive to Jim's needs. They have agreed to supply the gray pull-ups for him to wear. This white ones were never acceptable to Jim, and it was a source of anxiety and anger when it came time for him to change.

Jim's gait seems slower to me. When we walk the halls, he frequently will rest his hand on the railing along the side of the wall for a little extra support. There are a few new residents whom we are getting to know. Yesterday the manger of the unit put a stop sign on Jim's door. Apparently there is one resident who likes to open Jim's door when he is sleeping and proceeds to poke him, trying to wake him up. Manager is hoping the stop sign will deter this resident. I so appreciate their attention to detail, looking for solutions to prevent potential problems.

Since writing my last post, I've thought a lot about the difficulty Jim's brother has with communicating with Jim. As I read what I wrote, it now seems harsh to me. I appreciate the thoughtful responses to the post that helped me to be more sensitive to how difficult it can be for many people to interact with someone with dementia.

As mentioned before, our house is on the market. There have been a couple of showings, but no purchase offers yet. It's a rough time of year for moving real estate, but things always pick up in the spring.

As I wrote this morning in an email to my friend Jabberwalky "It's funny, but I'm definitely disengaging with our house. I kind of feel like I'm just a "holder" until someone else moves in. It's hard to be here, as everywhere I look, there are so many memories and reminders of what I no longer have - a home with my life partner."  

Sad as it is, I think it is a healthy response and helps me to move on with my life as I need to, given the current reality of our situation.

I have a friend who lives in New Hampshire. She and I have been friends for many years and actually worked for the same agency in the 1970's. After she retired, she and her husband moved to NH. But we always kept in touch over the years at Christmas time with cards and notes. Last Christmas I shared with her about Jim's dementia. Imagine my surprise when I received some specialty fudge from Provincetown in the mail! She was reminiscing about a trip to Cape Cod we took together many, many years ago. Such a thoughtful way to reach out to me to let me know she cares.

Fellow blog writer Alice wrote a great post yesterday. The dementia journey is different for each of us, but the bond we share as caregivers is so important; it helps to know that we are not alone.

Thanks for stopping by. I so appreciate each one of you!

Sunday, January 21, 2018

I Reached for Him and He Was't There

Not every morning, but some mornings it happens. I roll over, barely awake, fully expecting that he will be there. But he's not. My brain quickly makes the adjustment...It's incredibly sad. But I don't dwell on it. I get up, out of bed and start my day.

Jim's birthday was Saturday; he is 69. I had a small gathering to celebrate: our good friends Mike and Sally (Mike has been a lifesaver throughout this whole dementia journey) and his brother Bill. We used the fireplace room, which is a quiet, small room with table and chairs. The door can be closed for privacy. We had the Ultimate Chocolate Cake from Wegmans, ice cream, balloons and presents.

It was interesting to watch Jim open his presents. It almost reminded me of a very small child at Christmas, who is more interested in the paper, the box and the bag. Jim barely looked at the gifts, but enjoyed handling and folding the paper and the bag. We captured some nice photos of Jim and me in front of the fireplace.

Jim's brother lives about 3 hours away. He periodically will come in to see his brother. Bill has always had a controlling personality, albeit in a quiet and polite manner. Before he became ill, Jim could always hold his own with his brother, setting him straight and refusing to allow this personality defect to interfere with our lives.

Since Jim became ill, Bill has been unable to alter his approach with his brother.  When visiting, Bill would quietly insist that Jim do something; if Jim didn't respond, Bill would persist and  insist, until Jim blew up at him. The crazy thing is that it is always  over inconsequential things. Nothing that is important. (Example: Bill offered to help Jim open his milk carton. Jim said "no". Bill persisted by saying "I'm only trying to help you." Jim again says "no". Bill then proceeds to grab the milk carton to open it for him. Jim gets angry, swears at his brother and then walks away, now in no mood for his meal.

I have counseled Bill many times, and so has our friend Mike. This weekend in particular, I wanted to make sure that our birthday gathering was not ruined by such foolishness. I was very direct with Bill, warning him to never contradict or insist, unless it was something that was life threatening or dangerous. He finally got the message!

But what has happened now is that he hardly says a word to Jim, just kind of sits there observing. I'm realizing that he doesn't know how to interact with his brother any longer. Jim still has residual feelings about all of this. While Jim's memory is so poor, he would never be able to recount what had happened, he remembers how someone makes him feel. Yesterday when he saw his brother arriving on the unit, he said to me quietly "What an a$$*@#%".

Maybe, eventually, Bill will figure out how to interact with his brother. Mike is a good support in this area. He too, has been very direct with Bill. We'll see. But either way, it is no longer a concern to me. I wish there was a better relationship, but I can't control that. All I can do is to protect my sweetheart from this type of upsetting interaction.

Our house is on the market. I have a lot of mixed feelings about it. On the one hand, it is emotionally difficult, as this is a home we designed and built together. So many lovely, happy memories. But on the other hand, I cannot afford to remain in this house. Plus, the house is just to big for one person, and the one acre yard and landscaping is just overwhelming to me.

It's been a busy couple of weeks, getting everything pristine and ready for the photographer and the videographer. There actually is a youtube tour of our home! Very professionally done. Someone requested a showing for tomorrow afternoon. It's not a great time of year to sell a house. This Spring I expect that things will pick up.

My counselor, Dr. M. has been an amazing support to me. I continue to see her on a weekly basis. She has created a safe place for me to share what is going on in my life. She made the observation that by moving now, while I still have the essence of Jim with me, it might be easier psychologically. Given the predictable progression of this disease, if I wait too long to move, it might end up being a compounded loss; the loss of the essence of my sweetheart, and the loss of our home that we shared together. If I move now (or in the near future), it gives me a chance to create a "home sweet home" while I still have him.

Last week I met with our financial guy, Geoff, to go over some of the financial concerns that have been on my mind. As always, Geoff helps me to look at all angles of financial decisions I am making. He recognizes the importance of looking at the psychological factors that weigh into the financial decisions we make (quality of life, the happiness factor, comfort level etc.).

He commented that he was impressed with all that I have accomplished in the last 3 - 6 months. That surprised me, but as I think about it, there really have been a lot of life changes for us during this time period. But I never could have done it without the amazing support from all of the wonderful people in my life.

And that includes all of you, my dear readers. Once again, my heart is lighter. Thanks so much for listening.

Saturday, January 6, 2018

I'm So Happy With You...Will You Marry Me?

As I've mentioned before, Jim thinks that he is at home. When he sees me, he thinks that I am returning home from work. What a blessing! When I leave after spending some time  with him, I always make sure he is involved in some kind of activity. Then I lean over, whisper in his ear "I'm going to the bathroom. I'll be right back." He replies "OK". I then give him a kiss on the cheek and head out to go home. It has worked so well. No angst over me leaving for the day. His memory is such that he won't remember that I was there just a few minutes ago. Staff know to say that I am at work and will be home soon, should he ask about me.

The other day when I arrived for the afternoon he was just finishing lunch. He stood up, walked over to greet me, hugged me tight and said "Carole, I am so happy with you. Will you marry me?" Moments like this I will treasure forever. How lucky am I that he still knows me, still loves me madly, and is able to tell me every day how much he loves me.

Jim has had some new challenges. His incontinence is increasing and he wears pull-ups to protect his clothing. At home, we were just starting to have some intermittent problems in this area. At home he never agreed to wearing anything other than his usual underwear. But at the care home, I have removed all of his usual underwear so that the only option is the pull-ups.

I go to great lengths to disguise them. I've even purchased some on my own that are a blue/gray color, rather than the white. As I help him dress, I put the pull-up in the athletic pants so that he is not as likely to notice as he would if it involved a two-step process.

The other morning (I had not yet arrived) he struck a staff person in the face twice as she and another staff person were trying to assist him in changing after he had been incontinent with a bowel movement. I talked to the two staff who were involved. They were wonderful. I was able to express my concern for their safety. They both assured me that they were not hurt, and that these situations go with the job of caring for folks with dementia.

I am deeply grateful for such kind, caring and understanding caregivers for Jim.

My other thought on all of this is to imagine how difficult this change must be for Jim. At some level I am sure he is embarrassed. He also is likely upset and angry that he no longer has the control over all of his bodily functions. It must be so hard for him!

He is not always agreeable to showering. Usually I am the one that is helping him. I seem to have better luck than the staff at getting him to agree. I usually turn it into a light-hearted experience. I get the water nice and warm and then ask him if he wants to take a shower with me. His face lights up and he almost always says yes!

Once his clothes are off and he is in the shower, he is distracted enough where he does not question the fact that I still have my clothes on. I help him wash his hair. He can still wash his body, with some prompting and a little help with the soap.

The weather on the East coast has been brutal. Our neighborhood has not been spared. Thursday I had a nail-biting commute between home and the nursing home. The route there involves a very steep hill going down, and then coming up. I witnessed several vehicles trying to get traction, but unable to. The salt and sand doesn't work as well in frigid temperatures. In addition, the rate of snowfall made it difficult for the plows to keep up. The howling winds and blowing snow made visibility almost non-existent. Wind chill factors have been around minus 20 degrees Fahrenheit.

Here's a picture taken this morning from my window,  looking out onto our deck.





I made the wise decision to stay home yesterday and today. We've had well over a foot of snowfall in the last two days with another 8 - 12 inches today. Tomorrow the snow will stop and I'll head up again. It is hard on me when I don't see Jim. I know he is well cared for, safe and contented. But I still miss him when I don't see him everyday.

I've met with a realtor and plan to put my house on the market in the near future. In many ways I am very pragmatic, and this decision is a no-brainer. The size, the expense and the upkeep are way too much for one person alone. But there is another part of me that realizes that I am closing the door on a chapter in our lives. A chapter that was full of love, life and wonderful experiences. Of course I know that Jim will never come home. He will never get better. His decline is inevitable. I'm stating the obvious. But on another level my heart aches. It's closure on a very wonderful part of our life.

I'm looking at possibly purchasing a condo not too far from here. It's about 1,000 square feet. Includes a garage for these terrible winters. I want to stay in the area so that I can continue to be close to where Jim is and where my friends are.

2017 was a year of turmoil, sadness and change. I look to 2018 as a year where my sweetheart is at last contented and safe. And I will do my best to cope with the challenges that life has sent our way.

Another post is written. Thanks so much for letting me share with you what is on my heart and on my mind. I'm so grateful for the amazing support I receive from each one of you!


Saturday, December 23, 2017

Finding Family in the Community of Dementia

Nothing could have surprised me more. Jim and I are making some wonderful friendships with the folks at the nursing home. Who knew? I know the names of most of the folks who live at the NH, as well as the staff who work there. We are enjoying that feeling that comes when you are getting to know someone, and finding that spending time together is a joy.

The staff are experts at interacting and comforting folks with dementia. When Marlene starts to cry because she "can't find the bus stop so I can go home", staff will gently reassure her that the bus doesn't come for another hour, and they will come to get her to make sure she doesn't miss the bus. Marlene smiles and says "thank you", and then joins the group at the table for cocoa and cookies.

When Jean cries out "Where is my son?", staff will reassure her by saying that he is at work, but will be by in an hour to visit her. Jean is satisfied with this response and asks to participate in a game of Bingo. 

The staff are showing kindness by reassuring each resident. The fact that the short term memory is so impaired allows staff to answer with what I call a "love response". I am in awe of their creative and kind ways to make certain that no one feels alone, frightened or deserted. 

When I visit Jim, I am fortunate to be a part of this fellowship. It is deeply comforting and heartening to see the love and caring that happens here.

Jim spends very little time in his room. I hear from staff and other family members that when I am not present, Jim enjoys the activities that are offered. He continues to engage in his counseling role, trying to reassure those who seem in distress. He sometimes talks to the staff as though they are his staff. This is reminiscent of when he was working in an administrative role and supervising a number of people. For example, the other day he approached a staff person and said "don't forget to talk to him about (something unintelligible). Staff person was great; she responded by saying, "don't worry; I'll make sure to do that."

I've had some folks say something along the lines of "this must be a very difficult holiday season for you." But you know, it actually is the best holiday season I have had in a few years! In holidays past, there was the stress of preparing food for ~ 20 - 25 people, as everyone gathered at our house for all the major holidays. The last few years were extremely stressful as Jim continued to decline. It was quite a balancing act trying to protect him and keep him stable, and at the same time entertain for so many people.

So instead, I've been a part of numerous holiday festivities at the NH. Baking cookies, Christmas carolers, Christmas parties, holiday sing-a-long, and visits from Santa. All with NO stress for me! And on Christmas day I will share a ham dinner with my sweetheart and the other guys at the table. There will be holiday cheer, another visit from Santa, and pleasant conversation. 

However you celebrate this holiday season, I'm sending lots of good cheer your way. I'm so grateful for each one of you. Your support and kind words have made my walk with dementia a little easer, and for that I am thankful.