Aspiration Pneumonia

Following up on the last post...FIL was kept in the skilled nursing facility for an entire week. It was not a good situation. There were many things that happened, and it was quite stressful for all of us. I spoke with a director, and told the truth regarding my concerns. I also stated I would not bash them on social media. So, just know that any new situation is difficult on dementia sufferers, as well as their care givers and loved ones. The most helpful information we gleaned from the situation is that the speech therapist believes he is aspirating every time he eats--thus, aspiration pneumonia. It was determined at that time, that he now needs a pureed diet, with nectar consistency liquids. Due to his increased weakness, we also had to start using a wheel chair alarm, to discourage  him from standing up without assistance.

We chose to move FIL back to his memory care facility. He arrived at around 4:30 pm on Monday; and before 8:00 am Tuesday, he was in an ambulance on the way to the ER again. The facility thought he had a seizure. After routine tests in the ER, the doctor decided he had pneumonia...again (or still)! He was admitted to the hospital and endured more IV antibiotics, plus numerous tests, and the stress of just being in a strange place. A bad reaction to a common seizure medication--Depakote--put FIL in a very angry/agitated state. It brought flash backs of his behaviors just before we entered him into memory care. He was exhausted, and so was I. When I realized what had happened, I firmly told the nurse, doctor, and anyone else that would listen: NO MORE DEPAKOTE!

After enduring an EEG and other tests, it was determined that there had been no seizure activity, but he does have advanced dementia. The doctor recommended more IV antibiotics outside of the hospital, which would mean a skilled nursing facility again. The family discussed the situation, and realized that this scenario could occur at any time, over and over. None of us want to put him through the rigor he had endured for the previous 2 1/2 weeks. Honestly, we can not continue the pattern either.

The choice for Hospice had basically been decided for us with this realization. We are determined to have no more ER visits, no more hospitalizations, NO MORE extreme interventions. Finally choosing to use hospice services was not a choice we took lightly. Our previous experience with it, when hubby's grandfather (FIL's father) passed in 2003, seemed more of an acceleration of the inevitable. However, the entire hospice platform has changed to help sustain a comfortable and dignified life for as long as it lasts. One of the most important features for us is that FIL will have care available 24/7 to treat any discomfort, injury, or crisis.

My next post will address hospice--what it is, who it helps, and what I learned. I feel it is important to share and educate others because this decision may present itself to families at any time.

In the Trenches

No time, no strength, no desire to post much since May. Dealing with dementia 'in the trenches' is exhausting physically, spiritually, emotionally, and mentally. Caregivers are prone to 'battle fatigue' with this disease. We are wearing thin, and that is not very easy to admit.

In mid-May I was able to escape Dementia Land, and go to my happy place--the BEACH! It was a wonderful time of renewal and rest. As soon as I returned, another crisis hit, and we were back 'in the trenches' again. 

My FIL had a very bad fall in June or July (I can't even remember when it was!) One of the difficulties with Parkinson's Disease is difficulty with movement. He experiences a shuffling gate (small steps where he drags his feet), and stiff muscles. If he trips or loses his balance, he will fall hard because he is unable to catch himself. So, after that ER visit, we decided that he needed to be monitored at night, because when he wakes up, he gets up. I began sitting with him M-Th nights, hubby takes Fri, and we have a paid sitter for Sat & Sun. We have been able to prevent falls, just by being there to help. During the day, there are more staff available, as well as more people out and about to watch him. 

In the last few months, we have noticed a rapid decline in FIL's overall strength. He is now having trouble sitting up in bed and standing from sitting position, without assistance. Lewy Body Dementia, and Parkinson's Disease are robbing him of mobility. His determination is still very strong, and he believes he can just get up and walk. However, that is not the case. 

His swallowing muscles are also weakening, which puts him at risk for aspiration pneumonia. His diet has been changed to what is called "mechanical soft foods" with "thickened liquids".  Just as it sounds, soft foods in small pieces are allowed; at this point, his liquids are nectar consistency. We have seen a big improvement, especially while drinking--he is much less likely to choke.

Last week, FIL grew extremely weak and exhibited some odd physical characteristics. Another trip to the ER diagnosed pneumonia. We have been expecting it at some point, but it was startling at the time. After an entire week in the hospital, IV antibiotics, and some really long nights, FIL was released to a skilled nursing facility yesterday, to continue IV antibiotics. It might seem like an easy transition, but its not. He does not understand the why of going to another place. It is totally different to him, which can cause agitation. At this time, we are weighing the pros and cons of keeping him there, or returning to his memory care facility for the duration of his life. These decisions are not to be taken lightly, because we want him to be comfortable, safe, and treated well. Dignity is very important to us; he is not able to speak for himself, so we must step up and make sure it happens. 

As we have entered this last phase of dementia, we are dealing with our own feelings about losing our loved one. Death is the outcome of this disease; there is no cure, and no one can beat it at this point in time. Quality of life becomes the major goal. It is agonizing to watch your loved one lose the ability to make his own decisions; to solve problems and complete everyday tasks. Seeing your loved one become a shell of their former self rips your heart out. At first, you mentally flip-flop between what they used to do, and compare what they do now. At some point, you just have to be ok with what your loved one is today, in the moments you have left. You have to enter their world because there is no reasoning with them; there is no correcting them; they are in their own reality. When you are able to do that, you can find joy in the little things: a real smile, a purposeful kiss on the cheek; a squeeze of your hand, an "I love you, too", and even true answers to questions. 

We know that God is in control of our every breath that keeps us alive. He already knows when He will call our loved one home. It becomes very clear that we have no control, and must rely on Him to carry us through this difficult time. I often pray for God to ease FIL's torments, but know the struggle is part of the process. I have said before that once you go through this Alzheimer's/Lewy Body Dementia experience, you will never be the same. You will become an advocate for research and education. Everyone will be touched by this at some point in their life, so get ready. I hope that my attempt to share our experience is enlightening, and will encourage you to explore this tragic, yet fascinating part of life.

Alzheimer's Association

Lewy Body Dementia Association

Adventures into the Unknown

I'm going to skip ahead a bit in the chronology of our story, because something I learned later in the journey helps me understand some of the first part. Most people are aware of Alzheimer's Dementia; in fact, it is the most recognized dementia. FIL never seemed to fit the mold though--he exhibited behaviors that were a bit more peculiar. A nurse at his facility mentioned Lewy Body Dementia to me because of some of his presenting behaviors. Once I looked it up,  I was so relieved to know that he isn't the odd one out; his symptoms and behaviors have a very specific reason and it is called LBD! It is the second most common form of dementia, and the most misdiagnosed.

The first place I looked when I began my research was here: Lewy Body Dementia Association

You can read the thorough definition and more about the disease at the link above, so I will not go in to that here. We now tell people that LBD is like having Alzheimer's + Parkinson's + Schizophrenia all in one! It is unpredictable, and exhausting for both caregiver and loved one.

Here are some examples regarding FIL:
Progressive dementia- Loss of attention span, and executive functions such as planning and reasoning. This is one of the things we first noticed. He did not know how to do things that he had done for 50+ years, such as popping the hood of a vehicle; or,  getting the tree trimmer to cut branches. (Think about it: A tree in the front yard needs a limb removed. You have to assess the situation and realize that you need a certain tool, and a ladder. You then must remember where those tools are located, and then go get them. Once found, you must take the tools back to the front yard; and then safely set up the ladder and prepare the tool for the task.) Well, he discussed the situation with a few others that were there to help, and headed to The Shop to find the tool and ladder. We waited. And waited. And waited. When he finally returned, he did not have the trimmer. I suspect he forget what he was looking for when he got to The Shop. In later stages, he tried to help take recycling items to the bin outside. He did this three to four times per week. When I watched him carefully, he gathered up the items and headed for the door...the wrong door. Once outside, he would walk to the bin, but not always remember where it was located, or how to open it.

Regarding attention, in later stages, he was all over the place. He sat for a minute, then was off to do something else. He would become fixated on something and could not be easily redirected no matter how hard we tried. He roamed the house and the yard; plus, he walked away from the house numerous times per day. It was like watching the Energizer Bunny, and keeping up with him was exhausting.

FIL's memory deficits became quite clear in the mid to late stages. He did not know my name or how I connected in the family. He would ask my name and where I lived. I would state my name and then explain that I am married to his son. Several times I heard, "Oh, that's great! I'm so glad  you told me!" A few minutes later, I might get asked the same question. One time, we had gone for one of our infamous walks. When we returned we sat at the table for a snack and he began telling MIL about this really nice, young girl that walked with him. She was a bit bossy and was always telling him to stop and look for cars, but she really was nice. He even looked at me and asked if I had met "that girl".

Hallucinations- FIL would often "see" things on the ground; at times, he even got down on the floor and picked at the carpet. He was unable to verbalize what he saw or was looking for, but he "saw" something. Recently while visiting FIL in his facility, he "saw" a dog and thought it was his own. I suggested that it wasn't his dog because it was not barking. Within minutes, he "saw" a women that he thought was moving her things out of her room. To him, it was real. He doesn't really understand that we can not see what he does. We generally play along so we don't upset him. He also became very paranoid about his things. He believed that others were taking his tools, etc and would get mad when he could not find something that he had misplaced. There was no reassuring him; he believed it and it was very real to him.

Features of Parkinson's- This was a little tricky. I never noticed a tremor in FIL, which I always thought was the most common feature of the disease. The big red flag for this symptom is the Dementia Shuffle as I call it. Short, uneven steps; stooped posture, and 'pill rolling' with his hands. This began happening more and more as time went along. While watching him eat recently, I did see his hands shake. I also found him to be very rigid and stiff. While trying to help him get out of bed one day, he kept stiffening and falling backward, almost like he was having a seizure. He has also begun to fall more often.

Sleep Disturbance- FIL has been known to act out his dreams, wake repeatedly through the night, and become drowsy during the day; all symptoms of LBD.

Visuospatial Abnormalities- This is most evident when FIL tries to eat. When he reaches for food or drink, he misses. He either over reaches or under reaches for what he wants. The other thing he does is step very high over a flooring transition. We did not notice this so much at home, but it is hard to miss now that he is in the facility.

These are clear symptoms of Lewy Body Dementia. The only way it can be 100% diagnosed is through autopsy following death. It is up to the families, friends and care givers to recognize and report symptoms to doctors. This is a "newly" discovered form of dementia, so not all doctors are up to date on it. If you suspect someone has dementia, as early as possible, see a neurologist. They are more skilled in diagnosing and treating many forms of dementia. Generally, dementia is not diagnosed until the mid to late stages, due to the person covering up their deficits; and those close to them adjusting to them, or decide it is "just old age." We have to be proactive! There is no cure yet; but there is research working on one. And there are several different drugs and drug combinations that can be used to slow the progression.

So What Is Dementia?

Most people have heard of dementia, and normally think of Alzheimer's. Right? That horrible disease that steals memories from our loved ones, and leaves them incapacitated in the end. Through this journey with FIL, we were told he had dementia; that's it, just dementia. It was not until we were preparing legal documents that I saw in his doctor's note the words, "Alzheimer's type dementia." Finally! We were finally given a name; we could deal with this much better. Or so we thought...

As I began daytime care giving for FIL, I took note of his behaviors. By this time, he did not communicate much, and when he did, most of it did not make sense to us. However, as I spent more time with him and really listened, I began to understand what he was trying to say. It became very clear to me that we could not just ask him a question out of the blue. "FIL, what do you want to do?" "FIL, are you hungry?" No, this did not compute; he would ask us what we said, over and over. We found ourselves speaking louder and louder, thinking he could not hear us. He actually had hearing aids several years ago that seemed to help, but he does not wear them now. I could tell that MIL was very frustrated every time she asked him a question. She wanted so badly to have a real conversation with FIL, just like they had for over 62 years!

I then realized that I would have to be with him in the moment and let him lead every conversation. When I did that, he began talking...a lot! One of his favorite activities was to visit the big shop he had built out back. As I said in the previous post, he was very talented and very active all of the time. The Shop represented what he knew: to be productive; to be the provider of his family. At first, he was so excited to show me his many tool boxes, and pegboard covered walls full of tools. "Look at this!", he would say. "Have you ever seen so many tools?" He would proudly uncover the band saw and the jig saw he had standing near his toolboxes. He showed me a collection of jacks that he said worked so well when he needed to work on a car...He often told me that he built houses, and fixed cars...but he didn't know how many. I told him that he built the house I lived in; he asked if he did a good job!

His pick up was one of his prized possessions, and I remember when he bought it new. He used it for hauling brush, building materials, musical instruments, and electronic amps. He often said, "It isn't very old." Almost every time we went to The Shop, he wanted to show me that it still ran, so he would try to start it up...when he could find the handle to open the door. There were days that he went straight to the handle and opened it with no hesitation. But other times, I watched him start at the front wheel well and feel his way along, as he tried to "open the door". Once open, he would climb inside to "crank" it. FIL was a man of many keys, too. He had a big bundle of various keys that he kept in his pocket: Keys for the house, all of the sheds around the property, tool boxes, his pick up, MIL's van. You name it, he probably had a key for it on that key ring. It pained me to watch him. He tried key after key in the ignition...but could not find the right one. At times he did have the right key, and the bells sounded; but he didn't hear them and tried more keys. One thing I learned about FIL--when he wants to do something, he is very persistent. Nine times out of ten, he eventually started the truck. When it didn't, I suggested that hubby take a look at it later.

As time went on, day after day, and numerous times a day of going to The Shop, I began to despise it. How many times would he show me the tool boxes by opening drawer after drawer? How many times would he explain that he used to build things and use all his things? One day in particular was very disturbing. He was in his "dementia stupor", as I liked to call it. He was mad at me for something, so he headed to The Shop. Once he was able to open the door and climb in the pick up, he shut the door and began trying to start it! I knew we were in trouble when he shut the door! He tried and tried several keys and once he found the right one, he revved the engine. He revved the engine so hard, I thought it might explode! In fact, the truck began to smoke heavily. I tried to get his attention so he would turn it off, but he was still quite angry and would not look at me. The fumes were horrible, so I had to step outside in fresh air. I called my hubby and told him what FIL was doing and that I thought he was going to blow up the engine! During that particular incident, I had to call MIL from the house to get him out of the truck. It was not a good morning.

You may have heard the term "sun downers", which generally means as the sun lowers in the horizon, dementia patients begin to act out and become agitated. This was true of FIL. Interestingly, as time went on, his became "after lunch downers". After our noon meal, he would get in his dementia stupor and act out in some way. Some days he was just angry and would give me lectures. It became a cruel joke when FIL would declare angrily, "You know who this belongs to? Me! It's all mine! I spent thou-sands and thou-sands of dollars on this." (He has a strange way of drawing out the word thousand; we will never forget it, and can now joke about it.) Over and over, day after day, increasingly angry and paranoid someone was taking his things. He had a habit of moving something every time he went to The Shop. Then, when he returned, oh my! "Someone" had taken this or that, and not returned it. When I asked him who was doing that, he said he knew, but would not tell me. I knew what he thought; he thought it was his sons. In the past, FIL lent them anything they needed. Car parts, tools, whatever he had. Now, they generally would return such items. But, FIL had it in his dementia mind that they were taking from him and not returning. "I don't like theives!" he would often declare.

More to come...

The Next Chapter...New Book

The end of October 2015...After a year working in foster care, I chose to leave. There were several reasons; it was just time. The next day, I became daytime care giver to my 81 year old Father-in-Law (FIL). He has suffered with dementia for many years. He needed constant attention; and my Mother-in-Law (MIL) was extremely stressed and needed some relief. This began the journey we are now navigating. We laugh, we cry, and we live for moments of joy. I interned for a year on the acute psychiatric unit of our local hospital while earning my Master's degree. This gave me invaluable experience with elderly dementia patients. However, we were not prepared for this journey...so we learn as we go, and I have been doing a lot of research on my own.  This blog will be my outlet to share what I learn, and to share what it is really like to care for someone with dementia. 

FIL is a very talented man and hard worker. He used to build houses (ours included); fixed and restored cars; grew bountiful gardens; did in-depth genealogy; hunted & fished; did woodworking; and played several instruments such as guitar, fiddle, mandolin, harmonica, and the bass. He was a member of the church choir, as well as a bluegrass band. He was also a member of a lodge for 45 years; and a member of an antique car club. He and MIL have been married for 62 years! My hubby and BIL are twins; MIL & FIL have three grand children and four great-grandchildren.

Signs of dementia became evident many years ago. A few episodes we remember are when FIL was driving with MIL; he drove on the wrong side of the road! We noticed that he began to grow silent during family gatherings. As time went on, he became confused while doing seemingly common tasks. One distinct memory was when my hubby went over to check their van; FIL did not know how to pop the hood. We noticed that he became uncomfortable in large groups of people--church, restaurants, etc. Then he began to get lost. One time, he told MIL that he was going to a certain little town several miles away to visit some old friends. He was gone a long time before she finally called us. It is an absolute miracle that he made it back safely. We seriously doubt he ever made it to that little town--it is more likely that he drove around our town the whole time.

My hubby disabled FIL's pick up so he could not drive off. So, FIL began to walk away from the house on his own. MIL usually didn't call us until he had been gone for a long time. The police, strangers, family members, neighbors and friends picked him up many times. Again, it is a miracle that he was not hurt somehow. This became a common event, and our biggest challenge with FIL at home.

So this is the introduction into our world with dementia. In the next post, I will begin explaining what it was like to be the daytime care giver for FIL.