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.

Wednesday, December 6, 2017

I Need Him More Than He Needs Me

It was a startling revelation. Who knew?

Jim has been away from home for about 2 months now. My life is so much different. My days have a flow to them that seems comfortable. I see Jim every day; sometimes for the morning and sometimes for the afternoon. I have managed to find some joy in being outside and exercising again. I live close enough to some great outdoor spaces that are perfect for a long walk. I bundle up, head outside and enjoy all that mother nature has given to us. I've always had a passion for physical activity, but have not been able to enjoy it for the last year or so, up until now.

Every day I look forward to seeing my sweetheart. He is always glad to see me, telling me he is glad that I am "home from work". I so enjoy the time we spend together. It gives me great joy to help him with shaving, brushing his teeth, making his bed and selecting just the right clothes. I sometimes help him shower if staff have not already done so.

I've mentioned before that Jim is one of the very few who is still quite mobile. Most are in wheelchairs, some use walkers, and only a few are able to walk unaided. Jim's gait has slowed considerably, but he remains steady on his feet and enjoys "doing laps" around the unit.

There is a paucity of speech. His spontaneous speech usually occurs when he first sees me. We hug and kiss, and he tells me how much he loves me. He still has the words to tell me that I am the love of his life. We've always shared a very affectionate relationship and we thrived on physical and verbal expressions of our love for each other. How lucky I am that we are still able to share this closeness!

Otherwise, there is minimal speech. The other day I had someone take a picture of the two of us in front of the Christmas tree everyone had decorated. I was trying to get him to smile, so I said "Tell me you love me." He responded by saying "I love me."

Yesterday the daughter of one of the residents passed us in the hall and said "Hi Jim." He responded with a smile and said "Hi Jim."

His appetite is good and he really enjoys the food. There are lots of social hours and activities, all geared for folks with dementia.

Last week I needed to spend the day and the overnight with my mom following a medical procedure. It was the first time that I was not able to see Jim for at least a portion of the day. That night, as I tried to sleep, I quietly cried. I missed him terribly! I knew that he was perfectly fine. Staff love him and the other residents are fond of him as well. I knew that Mike had spent the afternoon with him, so that he would not be without company for the day. But yet in spite of that, I felt so alone and very lonely. I realized that I needed Jim, likely more than he needed me!

I'm grieving the loss of my Jim. As regular readers of my blog know, the loss has been fairly steady, especially over the last couple of years. The Jim I knew, is no longer. But! I still have a part of him, and it seems to be the very best of him. Our love for each other is something that we still can share and hold on to. What will I do when this is gone?

I'm receiving counseling on a regular basis and it is helping me immensely. For that hour, I am able to say whatever is on my mind and my heart, knowing that Dr. M. is there to help me process what I am feeling and experiencing. I cry a lot in these sessions, but I imagine that is to be expected. As the emotions lay raw I know that I'm in a safe place to work through this grief that is a part of my life.

In spite of this, there are still times of great joy in my life. In addition to the time I spend with Jim every day, I have reconnected with a few close friends. Going for a walk, going out to lunch, or just some girlfriend gab time together are all luxuries that were not possible 2 months ago.

Holidays can be a rough time for those who are grieving. I was able to spend Thanksgiving with Jim, sharing a holiday meal with him and the other residents. I look forward to doing the same on Christmas day. I did not decorate our house this year. I just couldn't find it in me to do so. Instead, I am thoroughly enjoying the Christmas tree and decorations at the nursing home. I brought up a small lit tree for Jim's room. The Rockettes Christmas video, the Christmas cookies and carols, and the festive atmosphere are all I need to enjoy this holiday season with my sweetheart.

Thanks for stopping by. I so appreciate each of you! The support I receive from the readers of this blog really means a lot to me.

**** I've added a second page to my blog, one that highlights the progression of Jim's dementia. You can access it by clicking the button at the top of the blog "Progression of Dementia".

Tuesday, November 14, 2017

Dementia's Wife Steps Out of the Caregiver Role

It's been a while since I have posted. Slowly I am adjusting to this major life change that Jim and I are experiencing. At times I am incredibly sad. How can I not be? I miss him terribly. He continues to lose ground cognitively and physically. This is expected of course, but still just incredibly sad. I don't know which is worse; losing him a little bit at a time or dealing with a sudden death. Of course I don't get to choose, so I will make the best of it and appreciate what we still have together.

I see Jim every day, usually spending the morning or the afternoon with him. I enjoy this time with my sweetheart. I help him shave, brush his teeth and make any clothing adjustments as needed. He is always glad to see me. We still hug, kiss, and hold hands.

I've noticed that he is speaking less; he rarely initiates a verbal exchange. In response to others' conversation or query there may be no response, an unintelligible response, and every once in a while he says a phrase or two that makes perfect sense.

In spite of this, he is still able to quietly tell me how much he loves me, or to say "You are the love of my life". This is a phrase that was commonly said to each other over the years. Somehow he is still able to express this. How lucky I am to still be able to feel and hear his expression of love for me.

His gait is slower and more unsteady. He usually uses the railing on the wall for balance as we do our laps around the unit. His kindness to others who live here is such a gift! To be able to see the "real Jim" in action is so heartwarming. It is expressed by a gentle touch, a kind word or lending a hand to someone who needs his help.

Never, ever, did I expect such a smooth transition for Jim. I anticipated that he would be miserable, unhappy and always trying to "go home". The kind, gentle approach and an environment perfectly suited for one with dementia have all contributed to his happiness and contentment. The nursing home is able to do for Jim what I never could have provided for him at home. A warm, loving, caring and safe environment.

I am happiest when I am with Jim. It is so reassuring to see him, touch him and be reassured that he is doing OK. Evenings are the toughest for me. By the end of the day I am tired, low on energy and feel the emptiness or this big house.

I'm getting my life in order to prepare for downsizing sometime early next year. It will be a relief to move to something small and more manageable. I'm leaning toward a condo or townhouse. I'm still working out the financial piece to pay for Jim's care at the nursing home. It's complicated and expensive, but I've got some very smart and caring people to help me with this process.

I am seeing a psychologist (Dr. M) once a week. I'm so glad that I decided to do this. It gives me the freedom to say what ever is on my mind in a warm, caring and supportive environment. I talk, and talk, and talk some more! This therapy allows me to say freely what I am thinking without worrying about judgement or acceptance. While the stress of being the frontline caregiver is gone, I know that the inevitable loss of Jim is going to be very hard on me. I'm grateful for the support from Dr. M to see me through this difficult time in my life.

It's funny the things that will cause me to become overwhelmed with emotion. Last night I was talking on the phone with my friend Julie. We started to talk about Thanksgiving, and suddenly the tears just started falling. I'm working through an internal conflict about what I will do for the holidays. My heart is saying that I can't imagine the holidays without  Jim. But then I need to work through the obligation of what someone else thinks I should do. My heart will win, thankfully, but hopefully without too much angst over others' expectations.

I'm not sure about the direction of my blog, or even if I should continue to post. I'm so grateful for the opportunity to write and have this wonderful group of friends visit me and respond with warmth and kindness. All of you helped me through the most difficult time in my life. For that I will always be grateful.

Sunday, October 22, 2017

The Essence of Jim Still Manages to Shine Through the Cloud of Dementia

When I look back a year ago, it is shocking to me how much Jim has declined over this relatively short period of time. A year ago Jim was still driving. We were in a transition period where I knew that before too long, he would no longer be safe to drive.  A year ago I was able to leave the house for a period of time leaving Jim alone. Mechanical tools and equipment were becoming difficult for him to use. 

He had some problems with word finding, but was able to communicate fairly clearly, for the most part. I was just starting to feel the frustration and worry about being caregiver to my elderly mom and still be available for Jim. My brother and his wife have taken over the caregiving responsibilities for my mom, and for that I am forever grateful. She is in good hands. Unfortunately her cancer has returned. At 88 it is not clear what options there are for her. She has an upcoming appointment where she will learn more about the latest diagnostic testing results and recommendations. 

Since my last post I found and attended a support group for caregivers of folks with dementia. It was a little disappointing. There were only 3 in attendance (including the facilitator) and quite a bit of the conversation was off topic between the facilitator and the other person present. At one point the facilitator asked me what I considered my biggest challenge. My practical mind immediately thought of finances, but as I sat there I became overwhelmed with emotion as I said "I miss my husband. I feel like I am losing a bit more of him with every passing day." 

I don't allow myself to dwell too much on the heartbreaking reality of our situation. If I did, I'd be a basket case. But every once in a while, it hits me hard. As far as the support group goes, I'll keep looking. Most groups meet just monthly. The one I attended is every other Thursday, which I feel is just what I need right now. So I'll keep going to this one until I find one that is a better fit for me. 

Dr. S. referred me to a psychologist to help me through this difficult period in my life. At first I wasn't certain I needed this level of support, but now I know that I do. 

Jim is receiving wonderful care at the NH. I couldn't have hand-picked better staff myself. Just as an example, Jim and I were walking down one of the long hallways. Off in the distance I could hear Tiffany's soothing voice, saying such sweet things and obviously giving a lot of TLC to one of the residents. As I walked by the room, it occurred to me that how you behave when no one is looking is really the measure of character. Tiffany was giving her love and her time to this frail, bedridden elderly woman. It was a real "feel good" moment. 

I go every day, sometimes for the morning and sometimes for the afternoon. I look forward to it every day, as I get to see my sweetheart and be reassured that he is safe. I help him shave, brush his teeth and make any clothing changes that are needed. It gives me joy to be able to help him with these things. Staff are grateful as it frees them up to help those with greater physical needs. 

He's always happy to see me; we hug each other tight, kiss, and hold hands just like we always have. We've always been very affectionate with each other, and none of that has changed! I am so grateful for that. He has no sense of where he is; he doesn't ask me where I've been. He may think he is at home; one day he asked me if I just got home from work. I went with it and said yes. 

The food is delicious! They have round dining tables that seat 6 (there's always room for me to squeeze in too). Over lunch the other day one of Jim's table mates, Don, said something to Jim that was totally unintelligible. Jim smiled and chuckled and said something back to Don that also was unintelligible. Then both of them were laughing! They were having a grand old time! 

What I have found fascinating is Jim's response to others who seem confused or in distress. The essence of who Jim is responds in ways that can only be described as therapeutic. I've seen him try to help someone find their room, he consoles those who are distressed by patting their shoulder and telling them that "it will be OK". The recreation therapist told me she saw him counsel someone who was worried that her daughter hadn't been in to see her. That's my sweetheart! 

There have been some challenges, but I knew there would be. He is not always taking his medications. I remember at home the stunts I would have to pull to make sure he was taking his pills. Lots of sweet talk, ice cream, re-approaching, joking around...I had a lot of tricks up my sleeve. Staff are in a learning curve for how best to approach Jim. They have been very receptive to my suggestions. 

The last four nights he has not slept well, getting anywhere from 2 - 4 hours of sleep. Some of this is likely from the missed medications. So hopefully this will correct itself soon, as staff fine tune there approach with Jim.

He's had episodes of agitation, actually hitting staff. Fortunately it was not hard, and no one was hurt. I'm certain that this too is related to the missed medications. 

Physical therapy ended two days ago. This means that Medicare is no longer picking up the bill. So now private pay begins. I've had two productive meetings with Susan, my attorney and her two medicaid expert associates. I now am in a position where I understand legally what my options are and ways to preserve some of our assets. None of it is easy, or without some significant consequences. Tomorrow I meet with Geoff, the best financial advisor ever, who will help me to sort out the options and figure out what makes the most sense "financially and emotionally" (Geoff's words). 

Another wonderful opportunity for me to share what is on my mind and in my heart. Thank you to each one of you for stopping by. The kindness and support I receive from all my kind readers means the world to me, and I am forever grateful.

Saturday, October 14, 2017

It's Been a While and a Lot Has Happened...

The day following my last post, Jim had an episode where he was severely agitated. Fortunately I had my phone and key fob in my pocket. He didn't know who I was, but was very angry at me, ordering me out of the house. So that is just what I did. I drove around for about 5 minutes, hoping that by leaving and then returning it would break the cycle. As I came driving down our driveway he opened the front door and shook his fist at me, yelling for me to "Get out of here!"

Heeding the advice of Jim's gerontologist, Dr. S., I  pulled out of the driveway and parked down the street where he could not see me and called 911. Obviously it was not safe for Jim to be home alone, and it was not safe for me to try to enter our home.

I was very careful to convey to the dispatcher that Jim had advanced dementia. He assured me he would pass this along to the responding officer. I was advised to wait in my car with the doors locked, out of sight, until the police arrived. And that is exactly what I did.

The police officer that arrived was wonderful. He spoke with me first to get a little background information. I made certain he was aware of the recommendation of Dr. S. that he be taken to the ER and then admitted for stabilization and medication adjustment. We then both walked down the driveway; Jim met us at the door. It was interesting to see the officer's reaction. I could tell he was shocked by how relatively young Jim looked, given his very advanced dementia.

Jim was still agitated towards me, but respectful of the police officer. At one point the officer indicated to me to back away; so I did. Somehow he managed to get Jim to agree to go to the hospital. I remained in the background, not wanting to interfere with how well the officer was managing the situation.

Fortunately I had my packet of emergency medical information ready to go. I was able to give a copy to the ambulance crew and then the ER doctor and nurse. Everyone that evaluated Jim in the ER was very curious about "our story". I"m certain it is because Jim looks so normal and looks too young to have such advanced dementia.

Jim was admitted and was in the hospital for about a week. While there he was more confused than ever. The doctor asked him his name and he said he couldn't remember 😢 That hit me really hard. I know that hospitalizations and illnesses will increase confusion when someone is vulnerable like Jim. But it still just broke my heart. I cannot imagine how he must have felt. He had no idea where he was, or even who he was.

He was very glad to see me and seemed to know who I was when I would visit him in the hospital. He had  an aide in the room at all times. At one point he went for about 48 hours with NO sleep. Finally they added a sleep aid and he started to sleep at least a few hours every night.

While he was in the hospital I would visit 3 times a day, staying about a couple of hours each time. It was a difficult week as I struggled to figure out what I was going to do. I was exhausted and worried sick about Jim. What was I going to do?

The doctor at the hospital (who also happens to be a gerontologist) told me that there really were no further adjustments that they could make for Jim's medications. There might be a little tweaking, but nothing that would address the severe agitation that Jim was experiencing.

In a very kind way, he told me he was concerned about my well-being and that it was not safe for Jim to be at home. He shared with me a few stories of caregivers who had been hurt by a spouse with dementia. I listened carefully to what he had to say.

Dr. S. called me after she had spoken to the doctor at the hospital and essentially told me the same thing. She agreed that maybe there might be some little changes that could be made in his medications, but that his case was so challenging, she did not believe it was safe for him to live at home with me.

Toward the end of the week the hospital social worker told me that he met the criteria for needing some physical therapy, given his increased weakness and his problems with balance. She suggested nursing home rehabilitation and pointed out that this would buy me some time while I figured out what I was going to do.

Medicare picks up 100% of the bill for nursing home placement for up to 21 days. But only if there is a skilled nursing need (such as PT) and only for as long as the person shows progress. Once the person plateaus, the funding ends. At that point it becomes private pay for $144,000/year.

It's a long story, but I almost got tricked into accepting placement at one of the worst nursing homes in the area. Thanks to knowing someone with the right connections, Jim was accepted at a nursing home for short term rehabilitation. This particular nursing home is considered one of the very best in the area.

So, that is where he is, at a nursing home for rehab. He is getting PT. Once he plateaus and medicare payment stops, I'll need to have a plan B. I'm working on that....

Now for the part that is almost unbelievable. Jim is happy and content. He has no idea where he is. He is always happy to see me when I come to see him. He never asks "where were you?". He never asks to go home. He loves it.

The unit is locked, and everyone on the unit has dementia. The shape is rectangular, so that people who like to walk can just keep walking and remain safe. There is a very large courtyard in the center that folks can enjoy when the weather is good.

They have activities available from 9:00 AM to 9:00 PM, for those who are interested. Everything from ice cream social, movies, sing-a-longs, basketball (modified/from a chair), current events (only happy ones!), coffee hour, and of course don't forget happy hour with non-alcoholic beer and wine, cheese and crackers.

The staff love Jim. He is without a doubt the youngest person there and one of the more mobile ones. The staff are amazingly good with folks. Kindness and gentleness prevail. As I look at how active Jim is and how much he loves it, I realize that I could never provide for him like that at home.

So, what do I do.......I'm in the process of figuring that out. What's best for Jim is top priority, but the financial piece has to work too. I've met with our attorney (the one who did our power-of-attorney, health care proxy and wills), and I have another appointment with her later this coming week to talk more about what options I might be able to pursue legally, taking into account the financial implications.

I thought I would share with you something personal. A few weeks ago I realized that I was feeling very overwhelmed and very, very sad. I found that I was crying a lot. Usually first thing in the morning and late in the evening. Somehow I would manage to pull myself together for the day to make sure I was there for Jim.

I was smart enough to realize that things were going to get worse, not better, and that I should get some help for myself. Every time I have seen Dr. S. (she is my doctor too), she always asks me if I am doing OK, and she reminds me that depression is very common among caregivers. I always reassured her that I was fine, but that I would let her know if I needed some help. Well, the time had come.

So, I made an appointment for myself. Dr. S. was wonderful! She told me that she could tell I was under a tremendous amount of stress. My blood pressure has always run very low my whole life. The top number usually is barely 100, and the bottom number in the 70's. At this office visit my BP was 130/88 and heart rate was 98! I guess my body was trying to tell me something.

She started me on an SSRI. It usually takes a little time before you notice an improvement. I am very pleased to tell you that I feel so much better! I know that Jim and I are in a difficult situation with no easy answers, but somehow I now feel much better equipped psychologically to handle what ever comes our way.

I remember telling Dr. S. that I wasn't anxious, just sad. Boy, was I fooling myself! The difference is just incredible. I saw a very good friend of mine yesterday. Amy and I have been friends for many years. Her life is incredibly busy for a lot of reasons, including that she is younger than me and still works full time. So we have not seen each other in a long time. But we email, text and talk on the phone to keep in touch. It became especially hard to see each other when Jim's condition worsened and I needed to be here to provide around the clock care.

When I saw Amy yesterday she couldn't believe that I didn't look more stressed! And she is right. I really do have a sense of calm, knowing that I can control only so much; I have to let the rest go knowing that I will deal with it the very best I can.

So dear readers, thanks for reading this very long post. There is a part 2, which I will post later in the week. I include all of you when I think about all the wonderful support I have on this journey with dementia. And for that I am so very grateful.