Last night for the first time in what seems like ages I had 20 minutes to myself. My hubby was working late and Uncle C was watching the nightly news in the living room. I snuck out to the patio, glass of wine and the new Southern Living in hand, and I just sat – flipping through the pages of the magazine and sipping my wine. And it felt wonderful! I left all of my worries behind. No guilt feelings to mar the peace and quiet. It’s amazing what such a small thing can do for your spirit. It was lovely.
A Little Me Time
May 24, 2012 by ACircleInThePath
Posted in Caring for Mom, Other Elderly Affairs | Tagged aging, coconut oil and dementia, delusions, dementia, depression, family, Hallucinations in the elderly, Lewy Body Dementia, peace, personal stories | 1 Comment »
Only Words
May 23, 2012 by ACircleInThePath
I heard words come out of my mouth that I never thought I’d hear. “I hate my life.” I said them to my husband one day last week. “I hate what my life has become.” Certainly I didn’t mean it. Did I? I was in a really bad place when I uttered those words. I was exhausted. I was tired of catering to everyone’s needs other than my own. I was tired of no privacy. I was tired of no time for myself. I was angry at everyone and everything.
And then there’s the feelings of guilt. That damn guilt for my selfishness in longing for time to myself, guilt for resenting having to wait on other people and bowing to their wants and needs. Oh how I dream of a day of quiet and peace. A day where I could just curl up with a good book and relax. A day where I would do nothing but take care of me. Gone are those days and I probably won’t see them again for years.
The feelings of hate for the life I have now has passed, at least for today. I’m pretty sure they will be back. It comes along with the depression that keeps creeping back into my life. If I could just figure out what triggers it maybe I could figure out how to stop it. It seems like one minute I am alright with what is happening around me and then the next I’m having trouble dealing again.
But at least for today, for this moment, I’m okay. I’m dealing rather well.
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Posted in Caring for Mom | Tagged aging, coconut oil and dementia, delusions, dementia, depression, elder care, Hallucinations in the elderly, Lewy Body Dementia, personal stories | 2 Comments »
1915 – Where Did That Come From?
May 17, 2012 by ACircleInThePath
Mom had a doctor’s appointment with Dr. L this week. Dad and my sister accompanied her. When the appointment was over my sister called to report on how it went. Apparently as soon as mom walked through the door the nurse practitioner took one look and said, “You weren’t walking like that last time you were here.” Correct. Mom’s walking has become significantly worse. She now shuffles when she walks and her muscles seem more rigid. She can’t get up from a sitting position without someone helping as the muscles in her legs have become extremely weak and she loses her balance easily. The nurse practitioner and a young intern had mom walk down the hall and noted the huge change in her mobility. The change could be caused by one of two things. One is that mom sleeps most days and doesn’t get up and around much. I called her on Mother’s Day at 12:30 p.m and dad had not yet been able to wake her. Her lack of movement, I think, is causing some of her problems. I have mentioned this repeatedly to both mom and dad, encouraging mom to get up and walk, ride the three-wheel bike or just move around a bit more, all to no avail. The second reason for the change could be the Lewy Body Dementia. Symptoms of Lewy Body do include rigid muscles and a shuffling walk. How do you know for sure?
The intern then gave mom a mental cognitive test. The test started off pretty rough. The first question was what year is this? Simple enough. Mom’s answer, “Uh, 19…15.” Holy cow! She wasn’t even born in 1915. Where in the world did that come from. But, she did very well on the remainder of the test. She was able to identify which month we were in, the day of the week and was only a day off on the date. The intern reported that mom had actually improved since her last exam. Yea! (Thank you coconut oil??)
When Dr. L came in she also noticed a difference in mom’s walk. Dr. L asked about mom’s balance and if she had fallen often. Dad reported only once. My sister disagreed, noting that she knew of at least two times that he had to call someone to help get mom off of the ground at which time dad admitted to two. Actually, mom has fallen quite a few times, but it’s hard arguing with dad. We have noticed that his memory appears to be failing also. The fact that he did not remember that mom has fallen several times is scary.
In checking mom’s balance, Dr. L asked her to close her eyes at which time she released mom’s hand. Mom immediately began to fall over. She didn’t do much better with her eyes open, again losing her balance when Dr. L released her hand. Not good, but not a surprise either. Dr. L determined that mom was in need of physical therapy. Oh how I love that doctor! I have wanted mom to get more physical therapy for two years. There was a physical therapist coming to their house after her last surgery, but mom and dad dismissed her. What’s with old people dismissing help? For some reason they think they don’t need it, they dismiss it and then the burden falls on the caregivers. Augh! (Okay, I’ll jump back off of my high horse now.) Dr. L suggested that mom go to the therapist’s office for therapy, not have the therapist come to her and have it scheduled for the morning. More great ideas. That will not only get mom up and out of bed earlier, but out of the house. Dr. L thinks that not only will the therapy help with mom’s strength, walking and balance, but also keep her awake during the day more and possibly tire her enough so that she might begin to sleep better at night. If this all works I will proclaim Dr. L brilliant!
For now I’m keeping my fingers crossed that mom complies with Dr. L’s orders and that it helps. Only time will tell.
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Posted in Caring for Mom | Tagged aging, coconut oil and dementia, delusions, dementia, elder care, family, Hallucinations in the elderly, Lewy Body Dementia, personal stories | 4 Comments »
The Big Move
May 10, 2012 by ACircleInThePath
I’ve spent the last five days packing up for the big move – and no, it’s not Uncle C. I’m still convinced he’s not going anywhere. It was my in-laws. A couple of weeks ago my father-in-law called to inform us that they had decided to move into an assisted living facility. Honestly, I think that is a very courageous, unselfish decision on their part. It has to be difficult to come to that conclusion after years of living and raising a family in the same home. They had been talking about it for about a year, but once they made the decision they were ready to go – NOW! That did pose a few problems.
Problem number one was that we live 700 miles away. Problem number two was that they were moving from a house of around 2,000 square feet into a 360 square foot assisted living apartment. The entire place is 18 feet by 20 feet. Ouch!
Once we told our kids that their grandparents were moving out of their home they all wanted to help. They also wanted to enjoy the old homestead one last time. All three made arrangements to be there. On Thursday my son flew into the nearest city with an airport which is about an hour away from my hubby’s hometown. Their town is very small. So tiny, in fact, that the majority of the streets are still brick. It is very quaint, but it’s like taking a step back into the 60′s, like visiting Mayberry. I keep waiting to spot Sheriff Taylor and Deputy Barney Fife walking down the street. (Am I dating myself? Certainly some of you remember The Andy Griffith Show!) Our two daughters along with our granddaughter drove 12 hours through the night on Friday, arriving around 7:00 a.m. on Saturday. They had about a day and a half with their grandparents before leaving Sunday evening to return home. Thank God they made it home safely - both had to be exhausted.
Hubby has one sister still living in their hometown, but his two brothers also drove in, both traveling several hours. My in-laws wanted family members to take items with them - furniture, old family photos, paintings, kitchenware, memorabilia, etc. Honestly, I need nothing. My house is jam-packed with stuff I had before Uncle C came to live with us and I ended up with even more after his arrival. But I didn’t have the heart to tell my mother-in-law that I wanted none of her treasures. I ended up bringing home one small table, some family pictures and a couple of other small items she wouldn’t let me leave without.
My father-in-law took it all in stride, but my mother-in-law seemed to be struggling with leaving her home. She had trouble deciding where to start, what to take, what to leave. I can only imagine the emotions that must have been raging through her. So much is collected over a lifetime. How do you decide that one item with so much history, so much sentimental value is not worth keeping, yet another is?
But in the end, it is all just stuff. And though it is hard to part with things that are special to you, the real tragedy is that this elderly couple can no longer care for themselves and feel the need to move out of the home they love. Yes, a huge burden will be lifted from my mother-in-law’s shoulders. She is the one preparing meals, cleaning, washing, caring for my father-in-law. But there is something so sad about actually giving up your independence, giving up your home.
The reality of it all hit when we visited the facility in which they are moving. The fact that the doors are always locked – inside and out – struck me as just wrong. I can understand keeping strangers out. But keeping the residents locked in ”for their own safety” is difficult to wrap my mind around. My in-laws are moving into an “assisted living” facility. They are not invalids. They are of a right mind, as apparently are the other residents. So why the locked doors? They have to ask to be let out of the building and give a description of where they are going and how long they plan to be out. Honestly, I think my father-in-law will hate that. And if there is any deal breaker for him, that will be it.
Once allowed in, we walked into a room of elderly people mouthing the words to old hymns as a woman played the piano. They just stared at us, blank looks on their faces. My thoughts were that my in-laws did not belong here. They are more active than that. My father-in-law still plays bridge three times a week. My mother-in-law plays a couple of times a week. He still drives (he shouldn’t, but he does) and they do their own shopping, go to church, go to the casino, etc.
The second shocker was walking into the actual apartment they will be living in and seeing just how tiny it actually is. It is one thing to say “360 square feet”. It is totally different to actually see that space. There is one living area, one bedroom, one bath, a closet and a kitchenette. I don’t even think their queen size bed will fit in the bedroom with enough space for them to walk around to get to the bathroom. But, it’s a decision they made on their own. No one is pushing them. No one is forcing them. And the good part is that they are not obligated to stay. If they hate it they can leave. The problem with that is where to go next. Their house will have a renter and the only other facility in town has an eight month wait.
Growing old is difficult. Body parts begin to break down, the mind sometimes goes. And then you get to a point where you can’t care for yourself anymore, you have to rely on others. It is such a sad time in life. Maybe I’ll be there one day. I hope not. I never want to be a burden on loved ones. No one does. But if I do, I hope I am as strong as my in-laws.
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Posted in Caring for Mom, Other Elderly Affairs | Tagged aging, Assisted Living, coconut oil and dementia, delusions, dementia, elder care, family, Hallucinations in the elderly, personal stories | Leave a Comment »
A Dip in the Bumpy Road
May 1, 2012 by ACircleInThePath
A couple of days ago I got the call from dad, whispering like only men whisper. You know what I mean - that deep, low, kind of creepy sounding voice that only men have because they really don’t understand quite how to whisper. It’s always the same, dad calling, whispering so mom doesn’t hear him, even though in all probability mom is either sleeping or nowhere near. Dad calling to tell me that mom was having a bad day. I wasn’t surprised by the call. Actually, I was expecting it. I knew it was coming. I had noticed that for the last few days mom wasn’t really with us. Those eyes were back – the dementia eyes. They weren’t the glaring at me kind of dementia eyes, but they definitely were there, just kind of peeking at me, teasing me, just letting me know that they were still hanging around. “Your mom’s having a bad day. When she woke up I was outside working in the yard. Her bag was full and she pulled it off. She just went back and laid down on the bed, just went back to sleep. It was a mess. She didn’t even know.” “I’m so sorry dad,” I responded. The ostomy complicates an already difficult situation. When she gets really confused she pulls it off.
Mom has been doing extremely well and I have been so pleased. The last two weekends my parents went camping with their camping club and both really seemed to enjoy it. Dad needs the interaction with others desperately and mom enjoyed it as much as I think she is capable. But when I visited them on their return I noticed the confusion. Maybe the camping tires her. Maybe she has to work so hard to pretend everything is okay that when she returns home she just can’t pretend anymore. Whatever the cause, the dementia reared its ugly head again.
Later that day I asked dad if he was still giving mom the coconut oil. He confirmed my suspicions – she hadn’t been on it for a couple of weeks. He just can’t get it down her any longer. He used to sneak it on a sandwich, slathering mustard over the coconut oil to cover the very distinct coconut flavor. He tried putting it on biscuits, covering it with jelly. He has tried cooking with it, but they both hate everything tasting like coconut. Mom now refuses to eat any type of bread - no sandwiches, no biscuits, no waffles, etc., – just to avoid that dreaded coconut flavor.
I believe there is a noticeable difference in mom when she is not taking the coconut oil. Initially I thought perhaps it was just a coincidence that the dementia seemed to worsen when she wasn’t taking it. But now, I really think there is a direct correlation.
The same day I found out mom was no longer taking the coconut oil an old friend happened to call. She had just discovered the benefits of coconut oil and was quite excited about it. From this conversation I learned that there is now a flavorless coconut oil. After doing a little research I found that the flavorless coconut oil does indeed exist, but it has been “refined” and has a “neutral” flavor. I would think that the “unrefined” coconut oil is probably better than the “refined”, but try as I may I cannot find information comparing the health benefits of the two. Nonetheless, I guess any coconut oil is better than no coconut oil so I’m off to the market in search of the “neutral” flavor oil. I am a believer and I’m not giving up yet.
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Posted in Caring for Mom | Tagged coconut oil, coconut oil and dementia, colostomy, delusions, dementia, elder care, family, Hallucinations in the elderly, Lewy Body Dementia, personal stories | 5 Comments »
I Think He’s Here To Stay
April 20, 2012 by ACircleInThePath
I keep waiting for Uncle C to move into the house we own across the street from us. My daughter is now living there with her 4-year-old daughter and they are waiting for him. Part of the deal with her living there is that she is to be his night-time caregiver. It will be a big job, but she is okay with it. She is loving and patient with him. It’s a great deal all the way around. We are happy to have her and our only grandchild so close, Uncle C will have a nice, safe place he can call home and we get our privacy back. We have filled the house with furniture, pictures and lovely items that we brought over from Houston so it can feel like home.
We have had difficulty finding a night-time caregiver that we felt comfortable with. I kept trying, but honestly my husband was resisting. He was afraid of someone taking advantage of an elderly man. Believe it or not, it does happen – often. The one woman who appeared to be perfect as she was a retired registered nurse, had recently moved to our area so was looking for some place to live and was willing to be a full-time caregiver didn’t work out. She sat with him twice in one weekend and by the Sunday he was ready to marry her. Uh, no. Not sure what went on there, but that scared us.
Whenever the subject of moving comes up Uncle C responds with, “I think I’ll be strong enough by the middle of March,” - well, March has come and gone or “I think in a couple of weeks I’ll be strong enough and will have my license back by then so will be ready to go.” The latest stall tactic is his toe. Working in the garden together the Saturday before Easter, my husband told me that Uncle C would be moving the next weekend. Hubby kept assuring me that Uncle C was ready. To say I was skeptical is an understatement. As I walked back into the house Uncle C met me in the kitchen saying that as he was walking down the hall he heard a crack and now his toe was hurting. He finished it with, “I thought I’d be in the other house by next weekend, but I guess not now. When the wheels starting coming off they really come off.” Uncle C had my hubby take him to a walk in clinic on Easter Sunday morning, telling the doctor that he thought he had gout. (Silly me, I put that thought in his head). He was given a shot of cortisone, more pain meds and sent home.
Now his toe injury has encompassed his entire foot. He never complains to me about it, he’s never mentioned it to the caregiver, only to my hubby. He insisted on seeing another doctor this week for his foot. Uncle C started with the same story he told me, walking down the hall, heard a crack, only now the toe has become the entire foot. X-rays were done, nothing has become of it, but Uncle C walked out a happy man with another prescription for his pain meds (which we have not filled). I finally told my hubby to just tell Uncle C that he doesn’t have to move and maybe he’ll quit making us take him to all these darn doctors!
He just keeps stringing my husband and daughter along with “I think I’m almost ready to move,” and they keep falling for it. Me, not so much. Just yesterday he spoke to my daughter about moving. Now he’s just waiting for the handicap rail to be put in the tub. Well, that’s easy enough. We’ll get that done this weekend and see what happens next.
For now, I’ve resigned myself to having him in my home ”till death do us part,” and he thinks he can live to a hundred. I guess I’ll be blogging a lot between now and then!
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Posted in Caring for Mom, Other Elderly Affairs | Tagged aging, dementia, elder care, elderly driving, family, personal stories | 6 Comments »
Me – The Aggressive One?
April 13, 2012 by ACircleInThePath
Growing up I was painfully shy. I struggled to hold conversations. I mulled things over in my mind for so long before deciding that it was okay to speak that usually the subject had changed and my opportunity to participate had passed. I thought of myself as “invisible” (still do at times) because much of the time when I finally did speak no one paid attention. In elementary school I had a few friends, but was much too shy to invite them over to my house to play. My mother did not understand this. She would hound me about inviting friends over. She tried everything, even guilt saying, “You must be embarrassed of us, that’s why you don’t have friends over.” That wasn’t it at all, but I have come to realize over the years that people who have never been shy will never understand how difficult it really is. Although my shyness did subside a bit, it haunted me through high school and into college - until I met my husband. He is one of those people who does not understand what shy means. Once we started dating he just wouldn’t let me be shy any longer. He pushed me, lovingly, to do things and participate in events that I would have never been able to do alone. After we were married, his job was such that he was required to organize events that involved hundreds of people, and I needed to participate. The biggest problem was that since he was the organizer of the event, I had to arrive alone which was terrifying. My hubby knew everyone, I knew few. I am better at it, but for years it was a huge struggle.
Basically, I still consider myself a shy person even though people who know me now would disagree. I still do not feel comfortable with some things – silly things - like asking a clerk in the grocery store where an item can be located, or calling friends to set up a tennis match. That is why I was taken aback when my kids all agreed that I was the aggressive one in my marriage.
The subject came up when my husband and I were having dinner in New Orleans several weeks ago with our youngest daughter. My daughter and hubby were talking about how in a relationship there is usually one person who is aggressive and one who is passive. I was stunned when my daughter said that she thought I was the aggressive one in our relationship. “Me? Why would you think that? I’m shocked!” They just laughed.
Later that evening we met up with my son, his fiancée and her parents who are good friends of ours. In conversation my daughter asked my son, “So who do you think is more aggressive, mom or dad?” “Oh, definitely mom,” was his response. Again, I was shocked. I couldn’t believe it. Just recently my son’s future mother-in-law had laughed about the time their priest told her during pre-marital counseling that she was too bossy. I’d believe that. But me? Turning to her I said, “Well, I knew you were the aggressive one in your relationship, but I had no idea I was in mine!” With a laugh she responded with, “You own it girl!”
How did I go from the little shy girl of old to the aggressive one in my marriage? How did I not know? I’m still having trouble wrapping my mind around that concept. Aggressive has such a negative connotation. Perhaps I’d have an easier time accepting if it was called something like – assertive. I’m the more assertive one. Doesn’t that sound better?
Anyway, on the advice of a good friend, I’m learning to own it!
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Posted in Caring for Mom | Tagged aggressive, aggressors, dementia, family, personal stories, shy, shyness | 10 Comments »
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