Dee2rites Blog

Tag: dementia

  • I Didn’t Plan This Journey – Through the Valley

    “Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me.” Psalm 23:4

              The word tells us that man makes his plans but the Lord orders their steps. (“A man’s heart plans his way, But the Lord directs his steps”  Proverbs 16:9)

    To say that the things that we had planned, have changed is a massive understatement. But looking back, I can see God’s hand preparing us for this leg of our journey. When we moved to Richland Springs in 2017 and began remodeling our house, Larry was determined to make it a home I would enjoy, letting me make most of the design decisions. The remodel was long and arduous, we laughed, we argued, we kissed and made up and worked everything out, and in the end we do have a home I enjoy being in. But I didn’t plan to be in it alone.

    After Larry was diagnosed with unspecified dementia, possibly Alzheimer’s, in 2020, we began making long-range plans, thinking that someday way off in the future we would need them. Durable power of attorneys, medical power of attorneys, updated our wills, all the legal paperwork that we might either one need in the future. Even with our finances, he tried to save as much as I would let him so that we would have money for the future.

    Now we have entered another leg of our journey, and when we each reach our destinations, we will be in two different places. Larry will be in glory with his Savior, the Lord Jesus Christ, and I will be alone in the home that he created for me.

    To say the events of the past 6 weeks has been traumatic is like saying a train wreck is a unplanned event. Larry had several falls, or if not falls, just found himself somehow in the floor. I was not able to get him up, and had to call for help. He had a severe UTI and three trips to the ER. With each event, his dementia became worse and other symptoms, such as hand tremors, became more and more pronounced. Our daughter, an RN, had first mentioned the possibility of Lewy Bodies disease, and I asked his neurologist about it in July. But he dismissed them as simply being a side effect of one of his medications. It was right after that we had the first trip to the ER with fever and the UTI.

    The first week of August, Larry began to refuse to take his medications, and by the end of that week was refusing to eat or drink. His dementia had taken an ugly turn and he became verbally aggressive and angry. Saturday, August the 6th, our daughter, Rachael, her friend Jay, and our granddaughter Kaylee, were here, and I am so thankful God had put in their hearts to come. We had to call EMS to come and take Larry to the ER again. That trip, the ER doctor saw something that others had not. He said “I’m not a neurologist, but it looks to me like he has Lewy Bodies Disease with Parkinson’s”. When I looked it up online and began to read about Lewy Bodies, it was like reading a checklist of all of Larry’s symptoms, going back to 2015 when he was diagnosed with severe Restless Legs, also a symptom of Lewey Bodies. I had told the doctors that he had no sense of smell, and they did not see that as anything significant. But it’s one of the early signs of Lewy Bodies. A VA nurse, and Rachael, also an RN, had been concerned that Larry had Orthostatic hypotension. But no doctor ever put that with his dementia, even though it is one symptom of Lewey Bodies disease. Reading the symptoms of this horrible disease was like reading a checklist of everything that Larry has been through for the past 10 years. How is it that an RN, and an ER doctor, were able to see and put together all the clues that three neurologist that had seen Larry over 10 years had failed put together? To say I’ve lost faith in our Healthcare system is kind of like saying I don’t believe in Santa Claus.

    When Larry left the hospital a week later, we had to move him to a nursing home because it was no longer safe for him or me for me to take care of him at home alone. And since then, he has continued to decline. When I have seen him there has only been two times that he recognized me and knew that I was there. Most of the time he was lost in his own little world. And now his condition has taken another drastic turn downward. As of this past weekend, he is no longer able to eat, to chew, or even drink from a straw. The fear is that he will aspirate on his food or drink if we try to force him.

    I had not been able to drive to go see him for a week, because I had to have surgery on my wrist that I broke while he was in the hospital. But I had planned to drive myself to see him yesterday, Monday September 29th, but my pastors, Cynthia and Tom Brand, sent me a text that morning and said they wanted to take me to lunch and then take me to go see Larry. I had a plan but God knew it was not the right plan. I am so thankful they were there with me.

    After visiting with the hospice nurse I had to make the decision I wasn’t prepared for yet – am I ready to discontinue his other drugs, which he had not been able to take except in liquid form, and have them only administer comfort drugs to keep him comfortable. It was one of the hardest things I’ve ever had to do, but I know it is for his best to let him go. He never opened his eyes or seemed to know that we were there. But I was able to talk to him, touch him, and tell him I loved him. Bro Tom knelt with me on the floor by his bed and prayed, for Larry to be comforted and not suffer any pain.

    I talked to our kids last night after I got home, and even though their lives are full and busy, they are coming this weekend to see their dad one more time. I don’t know how long it will be that he is still on Earth, but I will take comfort in knowing that where he will be in the end is far better than anything here. And I can look forward to see him one day over there.

              “We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord.” 2 Corinthians 5:8

    Peace and blessings in our Lord Jesus Christ,

    Dee

  • I Didn’t Plan This Trip – I Just Don’t Have the Words

    I Didn’t Plan This Trip – I Just Don’t Have the Words

    “Give ear to my words, O Lord, Consider my meditation.

    Give heed to the voice of my cry, My King and my God, For to You I will pray.

    My voice You shall hear in the morning, O Lord; In the morning I will direct it to You, And I will look up.” Psalm 5:1-3 (NKJV)

              “I just don’t have the words” – how many time do we say that phrase meaning we just can’t explain what we saw or experienced. Perhaps it was too beautiful to describe, such as the majestic Rocky Mountains. Perhaps it was something miraculous, such as seeing someone healed. Or too horrible to describe, like the aftermath of a tornado or hurricane. There is another reason – we actually forget or lose words. This is called Aphasia.

    Aphasia can be mild and normal as we age. Talking to a friend, we may not be able to recall the name of a person or place, but only later to have it come back to mind. No cause for alarm, it’s common in older adults. But for the person with Dementia, it’s much more serious.

    “Difficulty with language and communication (Aphasia), is a common symptom in dementia, especially as the condition progresses. It arises from the damage to language-processing areas of the brain caused by dementia. This can manifest as problems understanding or using language, including difficulty finding words, forming sentences, and understanding what others say.” (Google)

    This is where we are.

    When Larry and I were first married, he was the outgoing one. The person who talked to everyone at church or social events. I’m naturally introverted, and have always been uncomfortable at parties and social events. Even with family, he was the one joking and teasing. He especially loved teasing my Mother, and she loved teasing back. Dad and I were content to listen on the perimeter. Larry made friends easily and with most everyone he met. I had fewer, but closer, friendships. He was a natural born salesman because of his outgoing personality.

    As the Alzheimer’s has progressed, he has become quieter. He still enjoys going to church every Sunday, and wants to get there early so he can have a cup of coffee with the guys. And he enjoys going to the Men’s Bible study on Wednesday evenings when I can take him. But he’s the quiet one now.

    I was updating my sister and cousins on a Zoom call last Saturday about Larry’s condition, and my sister said that when she and her husband visited us last July, she noticed that Larry wasn’t as outgoing as he used to be. And there it is. Because he can’t always find the right words, or form a cohesive sentence, he just stays quiet. I’ve noticed that often when someone says something to him, he just laughs (sometimes inappropriately!) and I believe that’s because he didn’t comprehend what was being said.

    And that is the other side of the coin – Comprehension. There are days that I have trouble explaining something to him. He just can’t understand the meaning of the words I’m saying. I’m learning to use shorter sentences because if I give too much information at once, he’s forgotten the first part of what I said the time I finish.

    This is something else we’ve lost on this trip. Our ability to communicate. There used to be a time when we could almost finish one another’s sentences, we were so in sync. We talked about everything – the kids, church, politics and what was going on in the country. We said “I love you” frequently, at least once a day. What I miss the most is talking in bed at night before we kissed goodnight and fell asleep.

    Part of my prayer for myself is that I can be patient when I need to be patient in communicating with Larry on his bad days, especially in the evenings.

    ” (I pray) that you may walk worthy of the Lord, fully pleasing Him, being fruitful in every good work and increasing in the knowledge of God; strengthened with all might, according to His glorious power, for all patience and longsuffering with joy.”  Colossians 1:10-11

    Peace and blessings in our Lord Jesus Christ,

    Dee

  • I Didn’t Plan this trip – And the Road Gets Rocky Sometimes

    “Trust in the Lord with all your heart, And lean not on your own understanding” Proverbs 3:5

    Mornings used to be easy. I would get up, take my shower, have my coffee and yogurt. Larry would get up, dress himself and have his cereal. Easy, we’d be out the door to begin our day. Retirement had only changed the time we’d start our day. Until now.

              Larry has worn hearing aids for more than 10 years and has always taken care of them, putting them in his ears in the morning, taking them out at night and putting them in the charger. I was not involved. Until now.

              A few weeks ago, he told me his hearing aids wouldn’t go in right. I looked and saw what the problem was (backwards, wrong ears) and got them in for him. “How’d you do that? I’ve been trying for 30 minutes.” Since then, there have been more times I’ve had to put them in for him because he wasn’t able.

              I know that dementia patients often lose their ability to take care of their personal needs, such as putting in hearing aids or getting dressed. I see that day coming.

              Last week, we had two doctor appointments, the first one at 10 am and a second at the VA at 11 am. I told him the night before that he needed to shower and that I’d be getting him up early to get ready to go because we needed to leave around 9.

              Next morning, he comes into the kitchen dressed in cut-offs, dirty tee-shirt from the day before, flip-flops and his hearing aids are in his pocket. He said okay when I reminded him that we were going to the doctor so he needed to change. He told me his hearing aids wouldn’t go in so I put them in for him. He asked what shirt he should wear, something he’s never done before. As it progressed, I had to completely help him dress and find him some slip-on shoes because he couldn’t get his boots or his tennis shoes on. He’s barely moving. Time is flying by, he has to eat his breakfast, and I still have finish getting dressed. Time to leave, and we’re not ready.

    By the time we finally get out the door, it’s almost time for his first appointment. And we have a 30–45-minute drive, depending on roadwork on Hwy 45. But God, in His sovereignty already knew we would need an extra hour that morning.

    The doctor’s office had called the day before to see if they could move him to 11 am, but I told her no because he had an appointment at the VA at 11. She said that was fine. So, once we were on our way, I called to see if the 11 am appointment was still available and explained we were having a really bad morning. It was, and she changed it for me. No point calling the VA, by the time my call was routed through the VA in Temple to our local clinic, we’d be there.

    I drove straight to the VA clinic, and explained our situation. He only had an appointment with the nurse to check his blood pressure and turn in my chart where I’d recorded it daily for the past month. No problem, the nurse could see him at 1 pm. The ladies behind the counter were kind and sympathetic. I could breathe; I knew God was in control.

              We’re having more morning that start a little slower, he needs a little more help. But there are also mornings that go well, he’s independent in his dressing. I understand that this is just the beginning. So, I will give thanks for the good days, but I will also prepare for the mornings that don’t go well. But no matter what, I will choose to trust God because I know all of our days are in His hands.

    “and in Your book all the days [of my life] were written before ever they took shape, when as yet there was none of them” Psalm 139:16b Amp. Bible, Classic Edition

    Peace and blessings in our Lord Jesus Christ,

    Dee

  • I Didn’t Plan This Trip

    I Didn’t Plan This Trip

    “So do not worry or be anxious about tomorrow, for tomorrow will have worries and anxieties of its own. Sufficient for each day is its own trouble.”

    Matt. 6:34 AMPC

    In 2020 my husband and I embarked on a journey we never planned. He was having some problems with his memory, and I had noticed he had difficulty with his thinking occasionally. He was already seeing a VA neurologist for restless legs, so we requested that he be tested. Since this was in the beginning of the Covid shut-down, the VA had cancelled all in-person visits. So, she ordered a brain scan at the local hospital, and a few days later over the phone she confirmed our fears – there were plaque spots on his brain that could indicate dementia. But at that time, she offered no treatment.

              It’s been 5 years now, and so much has changed. The journey we never signed up for. A journey we wouldn’t wish on anyone. Day by day, I’m having to lean on my faith in God and His promises more and more. Some days are better than others. And no two days are the same. That is what this blog is about, our journey. I pray that it will help others who are on the same journey, if nothing else just know you are not alone.

              I have no answers, even his neurologist has no definitive answers. The medications available are limited, and they do not offer a cure, they only offer limited hope that maybe they can slow it down.  The National Institute on Aging says “Alzheimer’s is a progressive disease, where dementia symptoms gradually worsen over a number of years. In its early stages, memory loss is mild, but with late-stage Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment.”

              What I know is, Alzheimer’s is a despicable disease. Slowly stealing your loved one from you and your family. If you’re on this journey, you are not alone. I pray that you, and I, find our hope and peace in Jesus Christ.       

    Peace and blessings in our Lord Jesus Christ,

    Dee