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8/31/17 5:34 A

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Annie, what a great post. You touched on several things that amazed me in their effectiveness. One was music. My MIL would be slumped in the car seat, fairly unresponsive, as we drove to the next doctor visit. But my husband ordered Sirius radio for my car during the time we had so many visits due to a fall. When I'd turn on the 40's station music, she'd perk right up. Soon she was singing along, even singing a little ahead. She knew the music, her head was up, she started reading road signs and carrying on a conversation.

I believe it was Dr. Dobson that told the story of his mother (or MIL, don't remember now). She also was unresponsive, until they started singing favorite hymns to her. Suddenly, she sat up, and the person that had been so unresponsive started singing along! It brought a smile to her face as well as theirs.

I love your idea of finding what trigger points they have for the good. TV news is a definite trigger point for the bad, but I'm fascinated with the good ones, that, like music, can bring them back. Who would have thought genealogy could do that? Yet I can see that telling stories of those people way back in the memory might be just the trick, especially if family history was a favorite hobby.

For a long time, playing cards worked like that for mom. We played most every evening for decades, and she played with her dad the same way when she was younger. So, we played several times a day during caregiving. When I was young, I couldn't wait to grow up enough to beat her at cards. I never did beat her, until the dementia began taking its toll. It was a bittersweet moment when I finially starting winning at cards, because it wasn't due to my increased skill, but her failing faculties. She always won, no matter what card game it was, or who she played with. When she finally starting losing, I realized what a blessing it had been to have her mind sharp, and to lose to her. I used to get so frustrated to play a game I always lost, but it gave her such pleasure that I did it most every night for decades. Finally, as the disease progressed, she couldn't remember the rules, and would mishmash the rules of a dozen different games together in her mind, and then accuse me of cheating!

This is when you really need to move in their world. When her mind sloshes the game rules around, she really believes those ARE the rules, and YOU are the one breaking them. Trying to reason with her only made it worse. It's so much kinder to simply apologize for misunderstanding the rules, and then find a distraction, like getting the meal ready, or some music, or something else positive. Arguing helps no one in dementia cases, even if you're 'right'.

"Life is more than food. . ." Luke 12:23a


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8/25/17 10:39 A

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Judy, you really had a rough time of it. I'm not sure I was aware of the extent of what you were going through as I dealt with my own caregiving issues at that time. My Dad's dementia never caused him to turn on me but he would get confused and want to go home even though we were at home. He had lived in this house half his life.

When I was caring for Mom, after each health crisis I was anxious to get back to normal. I had to realize that THIS was the new normal. Even today with my own health issues, I realize that I am moving into a new Normal and things will never be how they used to be.
Like you said, we need to enjoy everything that works, body parts that still function, and even the things we or our family member can still do with limited function. Count our blessings. Focus on what we have instead of what we've lost.

When you become a caregiver, you have to reorganize your priorities. I had to realize what was the most important and let other things go. That was hard. To compensate, I would stay up after getting them to bed and use it as me-time, just like you said. It took a toll on my health. And I gained weight!

Working with them in their reality makes it easier. Weed out what is really important. If their perception is not something that will cause harm, indulge them. I, too, had to be careful what Dad watched on television. I never thought he would like cooking shows, but there was something about Paula Deen's southern drawl that soothed and calmed. He liked the Gaither Homecoming programs with Southern Gospel music groups. We couldn't watch the news at all (no great loss nowadays) because he thought it was happening here and now, like at our house or in the yard and would become agitated and troubled.

Why visit? Indeed! Many people think that. That was one of the most frustrating things to me as I cared for my parents. If for no other reason, visit to cheer and comfort the caregiver who has little access to the outside world while they care for their loved one. Send cards. Bring flowers or food.
I am one of six children. Where was everyone else? It felt like it was all on my shoulders. Everyone was busy. Everyone was working and had their own family and life. Some lived too far away to visit often. Some did what they could and felt they contributed. They did, but that didn't help during the long nights or during the hard times or times of health crisis.

Sometimes we find it hard to get away when we visit a shut-in. They are lonesome, with little contact to the outside world. They plead with you to stay a little longer. When I was much younger, my grandmother lived on the farm next door. I tried to stop a little while every day on my way home from work but always felt like I had to make excuses to get away. Consequently I didn't visit her as often. I am sorry I did that. She's been gone a long time now. How I would love to stop by and have a long chat or cook or crochet or knit with her. She taught me how to crochet when I was a child.

When my paternal grandfather no longer knew anyone so the family stopped visiting him in the nursing home, my father discovered if he read the Bible to him at the start of a visit, Grandpa would be right back in his normal mind and able to converse about anything. The Bible was dear to his heart. Dad shared that idea with his family so they could communicate with Grandpa too.
With my mother, I would get her to reminiscing about her childhood and rehearsing genealogy (a lifelong passion) to keep her sharp.
If you can find that key to get the person talking, it helps. I don't know if that would work with everyone. Sometimes it frustrates them when they can't pick up what you are talking about, or they realize they are forgetting things they should know.

There were funny moments, too. There were heartwarming moments. Life had changed. This was the new reality.

Do I regret it? We tried very hard to live without regrets. Set the priorities and don't look back. The only regrets I have are when I feel maybe I could have been more sympathetic or understanding. As I age and move into the first stages of needing a caregiver to help me do the things I can no longer do, I understand so much more what my parents and grandparents must have felt.

Edited by: ANNIESADVENTURE at: 8/25/2017 (10:44)



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8/3/17 4:43 P

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I've been AWOL for quite a while, trying to catch up on the things left undone while taking care of mom. Its good to be back. For those that don't know, my mom and I were frequent compatriots, hiking together, vacationing together, doing crafts, working in the garden. Even when I was married and gone, we still did things together. Then, I helped take care of my mom for ten years after she gave up driving-- doing her errands, paying the bills, and driving down to bring her a hot meal most nights, doing needed chores, and playing cards with her. After ten years of that, her dementia progressed to the point where she needed full-time care, and my son and I moved back home to take care of her. I did that for seven more years watching this vivacious, kind, sweet, thoughtful woman turn into a frustrated, bitter, combative and sometimes cruel shadow of herself.

For the first year and a half, I cried myself to sleep most nights. I'd gone from being an independent woman, with my own life, family, career, home, likes and dislikes--to being treated like a bad little girl, where everything has to be done mom's way, EXACT:LY her way, with all my stuff crammed into half a room that I couldn't spend much time in.

Then I found this group, and there were people here who understood. Just being able to type out the frustrations and let them loose in a safe environment eased the burden. On top of that, people here taught me coping skills that saved my life. I can't thank all of you enough for your support, you were a Godsend, a shaft of life in a dark, dark time.

So, I want to thank those of you that were here for me, and welcome those of you new to the group, and let you know that there is life, and help, and hope through this. Taking care of mom was possibly the hardest thing I've done, but also the most rewarding. I learned so much about life, I feel like I'm the one that gained the most. It was a privilege, and I'm thankful for the journey.

I thought I'd pass along some of the tips that made my journey easier. Please add your tips and suggestions as well!

1. Things have changed. Your parent is no longer in charge, and you are going to have to work out a new dynamic for the relationship. Up to now, we're used to parents being the head of the family. They make the decisions, we follow them. That works fine when you're a kid, but now, this situation has turned on its head. Your dementia patient parent can no longer be counted on to make rational decisions. As caretaker, you are now responsible for their safety and care. That means YOU have to make decisions and have them carried out. Only the parent isn't used to being in that role, and neither are you. This can cause immense friction, as you try to get them to follow doctor's orders, eat healthy foods, take their medications, do thier exercises, etc.

I am so blessed that when I first joined, someone wrote to me to remind me of this change, and to let me know I needed to change the dynamic. I was feeling like a bad little girl, never living up to mom's expectations, as I tried to care for her. I was giving up my own life to care for her, and instead of being happy, she was frustrated and making me feel bad. Once I realized that I was responsible for the situation, that mom couldn't make me feel bad, I was simply reacting to the change in our relationship by feeling that way, I saw a light at the end of the tunnel.

I was able then to stand up for my son when she belittled him, and simply walk away from the harsh words and spend one-on-one time with him playing a game or reading a story, turning the harshness into a sweet time together. It was a choice. When I needed to do something for her health or safety, like install child-proof locks or monitors, I could do so with a clear conscience, because I was simply doing my duty, even if mom didn't see a need for it. I was taking ownership of my actions, instead of feeling like a victim. I chose to take of my mother, I was not a victim, but a lifesaver.

When a lifeguard goes out into the water to save someone, the drowning person often flails, dragging the person saving them down into the water with them. We, the caregivers, can often feel like we're being drug under the water, drowning along with our flailing loved ones. We need to keep our head, take charge, and do what we need to do to get us safely back to shore.

2. That brings me to item two: One member reminded me that when a plane is in danger, the stewardess reminds you to put your oxygen mask on first, then you are prepared to help others. If you don't take of yourself, you can't help others for very long. Caregivers often skip normal, healthy habits, spending what little energy and strength we have left to care for our loved ones. Trouble is, we end up exhausted, frustrated, and even more unhealthy. That doesn't help anyone. Don't feel guilty about taking care of yourself. You are the captain of this caregiving ship. You need to be taking care of yourself to safely pilot the family to the other side.

Find things that restore your inner self. It may be reading, a craft, time out with a friend. You may need to accept help from others, or even harder, seek out help from others. You might need respite care (may insurances do cover a certain amount of this), a day care facility, or help from friends or family. Even just an hour away can do wonders.

Many of us take this time in the middle of the night, when we can finally be alone. This, too, has dangers, as lack of sleep not only makes the body produce cortisol, which causes you to pack on more pounds even while eating less food, but causes insatiable hunger as well, and inflammation responses in the body, leading to general health decline. The late night alone time helps feed our inner self, but at the same time helps destroy our outer self. We need to come up with a healthier alternative, and make it a priority.

3. Find the treasures hiding in the mire. When caregiving is hard, it's hard to see anything else, and we can spiral down a dark path. One of my biggest helps was looking for blessings in the mire. I never knew I was surrounded with so many. Once you start looking for the good things (and it can be extremely difficult at first), it gets easier and easier. My mom loved to play cards. I kept waiting until I grew up and finally could beat her at cards, but she was good, really good, and I never beat her. Then, she starting making stupid mistakes, and I finally beat her. But instead of feeling good about it, I realized that she had had this amazing blessing I hadn't recognized, until it was gone. The ability to make good choices was a blessing. The ability to think, to dress yourself (without putting one three pairs of pants and then the underwear on the outside), the ability to choose what you want to eat, and fix it, and then eat it. The ability to swallow, to know what a hand is and why it is attached to your body, the ability to hear, to see, to touch, to get up and go to the bathroom yourself, to be able to wipe yourself afterward, to appreciate a sunbeam, a butterfly, a smile. to savor memories. . .these were all blessings I learned to treasure as I slowly watched them ebb from my mother's life. That thing she is doing now that drives you crazy. . .will seem like a blessing later when she can no longer do it. So enjoy it all now, savor life to the fullest. You can think, and move, and help others, and they're all blessings.

4. Work with them in their world, not yours. The best thing another member told me was to stop trying to show mom what was "real". Real is relative. In my mother's mind, what she was experiencing WAS real, to her. Trying to tell her that she was wrong, that what she was seeing and feeling and knew to be true was all a lie, was all wrong, was like putting a match to a bonfire. No one wins. Instead, work from within their reality. If they are waiting for person X to arrive (who in reality has been dead for twenty years) and won't leave to go to the doctor's, instead of chiding them and trying to make them realize that person (we'll call them Johnny) is really dead, which does NOT make them feel better, by the way--you can simply move in their world. You could tell them that Johnny has been delayed (which he certainly is), and in the meantime you can get this doctor visit out of the way so she'll be ready later. Now the scenario makes sense in her world, and you accomplish what you need to do.

5. What is seen on TV and heard on the radio can be internalized as happening to them, so filter what you see/watch. I was having terrible nights, with mom trying to go out and rescue people. I'd be up half the night trying to calm her down. Turned out that the Weather Channel Storm Stories that we'd been watching (seemed safe, no sex, guns, or bad language. . .) got turned around in her dementia as having been real, happening now to her and her neighbors. So, in the middle of the night she'd be trying to rescue neighbors from tornadoes or floods. . .we learned to go for happy, upbeat stories and comedies without much of a plot (she couldn't follow a plot anyway), and without all the drama. It worked wonders. Who knew?

6. Limit choices. In a dementia-wracked brain, making choices is next to impossible. So asking, 'what do you want to wear?' or 'what do you want to eat for lunch?' or 'where do you want me to put this?' can be torture for them. They don't know, and it can frustrate them terribly. Getting my mother dressed turned into a nightmare. Until I learned this simple secret. People hate being told you MUST do this, we often immediately rebel. But, dementia patients often can't make a choice. What do you do? You want to respect their dignity, and let them feel as if they have some control over their life. So. . . If you give a choice, limit it to two things, this or that, both visible and concrete if possible. Hold up the blue outfit and the red one, and say, 'Would you rather wear the red or the blue outfit today?' (Notice it is their choice, what THEY would rather do.) If they still can't or won't decide, I would try: "The blue goes with your eyes so pretty, just makes them sparkle. Could we try to blue on and see how it looks?' It often worked, she would be calm and content, and the job of dressing went so much smoother.

7. Take five. Dementia patient often have very short memories, and that can work in your favor. Often, mom would drift off to sleep, and when she woke up, she could be in any of a variety of moods. If it was a specially difficult mood, everything would become high drama to her, and nothing was accomplished except causing us both great frustration. Instead of forcing the issue, it was often worthwhile to just let her drift back off to sleep for a while. She'd be awake again in fifteen minutes, and often pleasant, not remembering the former difficulty, often happily complying with whatever needed done next. If they absolutely won't do something they need to do, sometimes having a simple five minute calm break is enough to make the difference.

8. Keep it calm. It's often not them, it's the disease. Dementia patients react very negatively to raised voices and frustration in others. I know having them ask you the same question for the forty-second time today is frustrating, but it's not them it's the disease. They're not trying to be difficult (at least, not always). When you separate the person from the disease, you can love the person even when the disease is driving you crazy. When you can separate the two, it isn't near as frustrating. And when you stay calm through the storm, the storm tends to let up a bit.

9. People often say, 'Why visit, they won't remember anyway?' That may be true, and yet not. While they might not remember in their memory for two minutes that you just spent two hours with them, science says the positive brain functions of feeling cared for lasts for hours. It does make a difference, even if they don't know who you are, or think you are someone else.

That's plenty for now. . .I just wanted to give back some of the tips that helped me when caring for my mother. She has passed on now, made it to a hundred, and had a wonderful birthday surrounded by her friends and family. I'm now in the next stage, working on getting her house emptied and sold. That, too, is an emotional journey, but that's for another post.

"Life is more than food. . ." Luke 12:23a


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