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