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.

Saturday, September 30, 2017

Dementia Decides to Take a Long Walk

It's hard to know where to begin. It's been an incredibly intense couple of weeks. Dementia intensity; it sometimes takes my breath away. It can be heartbreaking, frightening, and incredibly sad all at the same time.

Jim has had a few medication changes over the last couple of weeks, trying to get the right combination/dose to help Jim through this next stage of his life. Things became so difficult, that at one point Dr. S. suggested an admission to stabilize his behaviors and fine tune the medication. The only problem with this is that it cannot be done as a direct admission, it must be done through a visit to the emergency room under a crisis situation. (Dr. S. does not work out of the hospital and therefore not able to arrange for a direct admission.)

I dread the thought of this. It would be terribly traumatic for Jim, and for me too.

Jim started a new medication 12 days ago. On the pill bottle, there was a small sticker that said "Take with Food". Seeing this, I assumed that food was needed to prevent an upset stomach. The medication is a twice daily pill, once in the morning and once at dinner.

Jim has never been a breakfast person, but I offered (and he took) a banana with his morning pill. I was dismayed to see a worsening of Jim's behavior with the new medication. He was highly agitated. Once I had to call for some help from the safety of a locked bathroom.

What I eventually discovered through the help of an internet search was that this particular medication requires eating a minimum of 500 calories when taking the pill. Otherwise the pill is not absorbed; it would be as if it were not taken at all! The label on the bottle should have said "Take with a Meal". I also take responsibility however, that I did not research this well enough myself. It's totally unlike me to not be thoroughly educated on new medications. Lesson learned.

So for the morning pill, I've set out a banana, two yogurt, ice cream and a couple of cookies for good measure. He eats it! He loves all of these foods, and I was hopeful that he would eat enough for the pill to be absorbed. He might be gaining some weight, but that's OK.

Since my discovery, he seems to be calmer. However the delusions and hallucinations are so very present most of the time. He sees a lot of people and many times during the day does not know who I am. But then he'll unexpectedly break back into reality and know that I am Carole.

The other day he was convinced that he needed to"go home". I was not Carole, and he needed to leave immediately. My usual tactics of sweet talk, "let's have some ice cream before you go" etc did not work. It happened to be one of those rare very hot days for September, 88 degrees Fahrenheit.

Out the door he goes. At first I wasn't worried, as whenever he has done this in the past he tires quickly, and by the end of the driveway turns around and comes back home. But not this time! I quickly took off on foot, trying to get him to come back home with me. He became pretty angry at me and more determined then ever to keep going. At this point I turned around to go back and get my car.

I turned out of our development, onto a road that is not terribly busy, but intersected with a major road with a busy intersection. I called 911, explained the situation, and they were ready to send someone to respond. While I was still on the phone with 911, my friend Julie just happened to be driving down the road, towards Jim. At this point I notified 911 that I thought the situation was under control, but would call back if help was needed. I really wanted to avoid a confrontation with police. Julie pulled her car over, and in her very kind, helpful way, was able to convince Jim to get in her car so that he could "go see Carole". I approached the car, and he became quite upset, obviously not recognizing me as Carole.

Too many details to go into here, but by the end of the day, Jim was safe, back at home with me, and relatively calm.

I learned something here. If Jim ever does this again, I will make one attempt to gently encourage him to not leave. If it doesn't work, then I will call 911. It likely will result in a visit to the ER, but this might bring a hospital admission to help stabilize Jim and make adjustments to his medications.  My futile attempts to follow him did nothing more that aggravate him. He had no idea who I was. Lesson learned.

What is amazing, is that he walked about 3/4 of a mile! It shows you what adrenalin can do.

I've ordered some alarms for the doors to be used at night. As I have mentioned, I'm a pretty sound sleeper. This alarm will sound in our bedroom only, and will be activated when an exterior door is opened. I then would follow through with one friendly attempt to ask him to stay, and then if that fails call 911.

I've had some suggestions from well-meaning friends about an extra lock that keeps someone in and can only be opened by a special key (to be held by me). But this would only accelerate the situation if Jim thought he was trapped inside our home and would worsen his agitation. The other suggestion I have had is to be ready to use some physical self-defense moves. Again, I see this as aggravating the situation. Plus, I just don't have that kind of response in me. Not enough testosterone in me! I'm all about escaping from the situation should it become dangerous.

Other precautions I have taken: cell phone and car key are in my pockets at all time, ready for a quick escape or making an emergency phone call.

Lately there have been no daytime naps, so it has been impossible to make private phone calls. My dear friend Jabberwalky made some phone calls on my behalf. I've got a good lead on a local agency that provides home care with no minimum hours required. I have a friend coming over next week to stay with Jim while I go off for a bit to make a few phone calls.

Jim's brother has been willing to come in every other weekend. This will give me a little bit of time to myself on Friday afternoon, and again on Saturday. Jim does not seem to notice or miss me when I am gone, so that is good. Jim's brother still not totally comfortable being left alone with Jim for too long, so I limit my time away to a couple of hours. He also is not quite as attentive as I am, but I think he is starting to understand how important it is to not let him out of sight.

I want to mention to my fellow bloggers that I'm sorry I haven't been able to read/comment as much as I usually do. It has been pretty intense, but I think things are starting to settle down so that I can resume my usual blogging and visiting my friends in the blogosphere world.

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

Tuesday, September 12, 2017

Dementia is Keeping Me On My Toes!

Jim enjoys a glass of wine with dinner each evening. This is relatively new. Prior to dementia, we would enjoy a drink or two on the weekend, but almost never during the week.  I no longer drink alcohol at all. I never was a big drinker and have always had a low tolerance for alcohol. Lately I've been thinking about how I need to be 100%, even during the night given the advancing decline and unpredictable behavior. So no more alcohol for me.

Tonight, for some unknown reason, Jim took his partially filled glass of wine and calmly poured some of it on the kitchen counter. I handled it well, even though it was so unexpected. I quietly cleaned it up and asked if he was done with his wine. He told me no, and then continued to drink his wine. I can't imagine what was going through his brain. He was not upset, we were enjoying a nice dinner, and he was actually in a good mood.

We bought bananas yesterday and at the end of the day I noticed that all five were gone! We bought more today; I put two out and hid the rest. He really is not able to partake of food or drink unless it is right in front of it. Maybe that is why he eats so many bananas; it's what he sees sitting on our counter. He has no idea how to get a glass of water, for example. I've been leaving bottled water out to encourage him to drink more.

Sometimes he'll try to drink the yogurt I put out for him if I'm not fast enough to put a spoon in it. The other day I handed him his evening pills and he promptly put them in his glass of wine! This morning his toothbrush with toothpaste on it went into his cup of coffee on the bathroom counter. And then he brushed his teeth! I didn't say anything; if he didn't mind, then I didn't mind either. Crushed red pepper for pizza was shaken into his glass of wine. These are just some of the reasons why I need to be on my toes all the time.

I have a bum knee. Long story short, I have arthritis secondary to a very old fracture. Eventually I'll need a knee replacement, but in the meantime I'm focusing on non-surgical options. When I told Jim about my ortho appointment he said "who will take care of me?" It was heartbreaking, and he sounded so sad. A rare moment of insight and vulnerability.  I quickly reassured him and told him we will always take care of each other.

I had a cortisone injection this morning and I'm hoping it will work; I should know within a week or so. Jim did great at the appointment. I was ready with my companion card and the office staff were wonderful. So grateful for those cards!

Jim is having increasing problems when we go to our  grocery store, Wegmans. When checking out, he now has a hard time understanding where our order ends (even though I use one of those dividers to separate orders). More than once he has tried to take groceries from the order behind us. And once he kept putting items back into our cart, not letting the woman scan the items! Again, thank goodness for those companion cards!

Wegmans has a delivery service, and it turns out we are indeed within their delivery range. There is a nominal fee for delivery and the price of items is a bit higher, but a small price to pay for convenience and peace of mind. Thinking ahead to this winter, we may need this wonderful service.

Had a wonderful meeting with our financial advisor last week. Geoff has been helping us for several years and has given us great advice and guidance along the way. His company is a fee-based company, which means you are paying for his expertise. There are no commissions to be paid from your investments. This totally eliminates the conflict of interest from commission based firms.

Geoff was so reassuring and encouraged me to use the money we have saved to provide support at this time of great need. He has some fancy software that will predict how long your money will last, given bear/bull markets, how your money is invested etc. He gave me some good advice for budgeting for routine needs and for caregiving support. After meeting with Geoff I have renewed confidence that we can do this, and that all will be OK.  And on top of being a really smart finance guy, he is just the sweetest guy, really caring, and listens very carefully to all concerns.

Given my renewed financial confidence, I contacted a woman who cleaned our house for us prior to retirement. Between my bum knee and Jim's need for my attention and near constant monitoring, I've had a hard time keeping up with cleaning our house. I wish I wasn't this way, but it drives me crazy if my house is not clean. If you were to walk into our house, everything looks neat and tidy as it is easy to keep things picked up. But don't check for dust, cobwebs, floors etc.

I'm hoping Jim remembers Halina. He was always fond of her. I can see some caregiving being woven into this arrangement as well. I expect to meet with her later this week to discuss details further.

So I am feeling hopeful! Kathy will be available mid-October, and Halina will be starting soon. Jim's brother plans on every other weekend. And Mike is always there if I need him. Things are looking up 😊

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

Saturday, September 2, 2017

Dementia Update; Out of Touch With Reality

There is a memory care facility  that will be opening in December of this year. It is less than 5 miles from our home. I arranged for a meeting with a representative, and Jim's brother graciously stayed with Jim while I went to my meeting. It's always good to get information and know what your options are.

It's going to be a lovely place. They are guided by the principles of Teepa Snow. Teepa is a dementia educator, and her philosophy is based on positive approaches. The facility rate is based on single versus double room, and level of care. If the person is a diabetic, or if a person is incontinent, this puts them in the higher level of care. It is very expensive, at $92,000 a year for someone with Jim's level of care. While I say it is expensive, I must also acknowledge that there are nursing homes in the area that charge north of $100,000 a year.

The representative was very knowledgeable and informative. She was thoughtful, caring, and I could tell that she really has a heart for the elderly and for those with dementia. She also provided me with a contact for some home care that sounds like it might be a good match for our needs. I've called twice this week; still waiting to hear back from this contact.

One of the limitations of home care agencies that I have found frustrating is the minimum number of hours per week. Usually it is something like 24 hours a week. That just would not work for us, at least not at this point. I'm looking for some help that would be just a few hours a week. Jim would need a gradual approach to someone else being here to help provide care.

In the meantime, a very dear friend of mine has connected me with her sister-in-law, Kathy. Apparently Kathy has done home care privately for a number of years, working with folks with dementia. I spoke to Kathy by phone and I was quite impressed. She is a polite, soft-spoken woman with a real heart for  those with dementia. She has some family travel planned over the next few weeks, but when she returns to the area in mid-October, we'll give it a try and see how it goes. I'm hopeful!

At this point, the hardest part (for both of us!) is the psychotic component to his Alzheimer's. As time passes, it seems like he spends more of each day further out of touch with reality. His hallucinations are so very real to him. It is so strange to have these bizarre conversations throughout the day which just make no cognitive sense. At times I feel like I'm losing my mind! This afternoon we were watching a documentary about China wildlife. The following is just one example of several confusing conversations we had.

Jim:  "It's the five and way it was. Do you think so?"

Me: "I think you're right about that."

Jim: "He walks the plant too loose. Did he tell you that?"

Me: "I'm not sure what he said..."

Jim: "What do I have to do about it?"

Me: "From what I know, everything is all set, so we don't need to do anything. We can just relax."

Jim has taken to rummaging. Our home is not cluttered, fortunately. But he does manage to find drawers to go through, my purse, take things out, put them other places etc.  He clearly is having difficulty figuring out where things go. I have found banana peels in bathroom trash, in the fridge and in the kitchen cupboard. A huge wad of clean tissues were in the dryer, articles of clothing in different parts of the house....I've decided to not let it bother me. I can't possibly follow him around and monitor his every move, every minute of the day.

We were at Wegmans last week and ran into one of our neighbors. We haven't seen her in a long time, and I wasn't sure if she knew about Jim's dementia.

Neighbor: "I haven't seen you in a while, and I was wondering how you are doing?"

Jim: "Just looking for a Saudi."

She gave me a knowing look, squeezed my hand and said "So good to see you. Be sure to call if you need something."

What must it be like inside his brain? I'm only hearing bits and pieces, but it must be so hard for him to have these crazy thoughts running through his brain all the time.

Living in an altered sense of reality. Another curse of dementia.

Thank you dear readers for stopping by. I appreciate each one of you. As always, my heart is lighter as I finish typing this post. Thanks for listening.








Monday, August 21, 2017

Dementia Tries to Throw Us Off Balance



One of the physical changes I have noticed over the last several weeks/months is the gradual worsening of Jim's balance . From what the doctor has told me and from what I have read, this is not uncommon in the later stages of dementia. I worry about him falling. Falls often lead to a cascade of other problems and a possible hospitalization. When I study his gait, I realize that a walker would not help, in fact it would probably increase the likelihood of a fall and injury. When he walks, he does not pick up his feet enough, causing a shuffling kind of walk that results in his sneaker catching on the floor. In addition, he walks more stiff-legged, which also causes problems with his balance. His favorite sneakers with the rubber soles don't help, and I believe make it worse. But he is not amenable to wearing different footwear.

His favorite outdoor activity, sweeping the driveway, is no longer safe for him to do because of his unsteadiness. This is such a sad moment for me; sweeping the driveway was one of the few things that he was able to do, adding to his sense of accomplishment. Jim has no awareness of his balance problem. This means that I need to pay close attention to the driveway; I try to get out there to clear the driveway before he has a chance to see the errant grass clippings, twigs etc.

As you can see by the above photo, I had grab bars installed. The closest one will give him support as he maneuvers over the small step into the shower. The other bar is placed so that when he is sitting on the shower seat, he can use the bar to safely lower himself as well as pull himself up. There is a hand held shower head that will be useful too. He does not see the need to use the corner shower seat at this time, but at some point I'm guessing he'll agree.

Sometime in the future I'll add a grab bar in the commode room if it looks like it is needed. A good friend of ours installed the grab bars for us. He is a carpenter by trade, and semi-retired. He also fixed a french door in our lower level that needed adjustment in order to use the deadbolt. I am so grateful for our friends!

Jim's breaks with reality are more frequent. Although this is to be expected as the disease progresses, it can make for some very rough days. One of the more common delusions in folks with Alzheimer's Disease with Psychosis is one of misidentification. Jim experiences this quite frequently, sometimes not realizing who I am, and even more often, not recognizing our home. This is the one that seems to be the most troubling for him. It occurs when we are driving home from someplace. As we pull into the driveway, he insists this is not our home. He becomes upset thinking that we are going to walk into a stranger's house. The only thing that breaks this train of thought is to leave, drive around a bit, try some distracting conversation, and then head home.

The card below is the "Companion Card" I had printed. I know I have talked about this before, but for newer readers I thought it was worth mentioning again. I always carry a few with me. The response I get from folks is always so positive. I like to think that perhaps the cards help others to be more understanding whenever they run into someone whose behavior seems odd or strange. A little kindness and understanding go a long way.





I want to end this post with a very sweet moment that I will cherish forever. A couple of days ago, after a particularly psychotic day, Jim came up to me, hugged me and said "Thank you for everything you do for me." With these very precious words, all the stress just melted way. I hugged him hard and said "And thank you for everything that you do for me too."

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