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As most of my readers know, I am caring for my elderly, widowed mom. My dad died in May, 2005, and though my mom still lives independently, in their house, she probably shouldn’t. That is her wish, and I want her to have every opportunity to stay there as long as she can. She no longer drives, and I take her to all her appointments and errands.

Before my dad died, he had retired to take care of her. About the only time he left her alone was when he went golfing, grocery shopping, or to a home (hardware) store. He had even taken over a good bit of the household chores. She had nearly died 2 times, when he was still alive, and none of us ever dreamed that she would outlive him, simply because of her medical problems. She is an insulin-dependent diabetic, has rheumatoid and osteo arthritis, fibromyalgia, failing eyesight, and lots of other ailments. But the thing that is probably the greatest threat to her right now (other than the diabetes) is that she is very off balance when she walks. She refuses to use her walker, except occasionally to go to the mailbox. When I am with her-I am the walker. She holds my hand everywhere we go, and even then she is on the brink of disaster. The other day we went to McDonalds, and I let go of her hand to open the door, and she spun around and almost fell off the curb. I say almost, because I was anticipating that might happen, and I grabbed her quickly. The only time I feel at ease is when she is pushing a shopping cart. (It makes a great walker!)

Monday, I took her for a liver scan, as her liver enzymes have been elevated for over a year. Thursday, I take her for a brain MRI.

The last visit we had with her doctor, he skimmed over the fact that she had been complaining about confusion, and said something like, “So you’re not really confused, right?” She hesitated, and he looked at me and said, “Do you think she is confused?” (What a horrible situation to put me in, to ask in front of her, but there really is no other chance to discuss it.) I told him that I thought she was (about some things.) He then proceeded to run one of his mini-mental status tests. (He had given her one before, and so had her diabetes specialist.) At any rate, he drew the face of a clock, handed her the paper, and then said, “I want you to make this clock say the time I tell you, so that anyone in the waiting room would look, and know what time it is.” (Part of me was praying that he wouldn’t say 10 till 2.) That is what she missed when he tested her last time. (And part of me wanted him to say it, because then he would realize how confused she was at times.) As I held my breath he said, “Okay let’s have you make it…um…10 till 2. Bingo-the challenge was on.

There is no way that I can explain to you the sadness of watching your mom try to draw the right time on a clock. As I said before, she is a very smart lady, and has worked for high ranking officers at the military base in our town. Everywhere she worked as a secretary, she was admired and complimented greatly. But now she cannot draw a clock face. Watching her struggle was heartbreaking. She just couldn’t do it.

My parents had the same doctor for years, but right when my dad was dying in the hospital, he retired. (Bad timing.) At any rate, we had to get another doctor for my mom, and we had heard that this doctor was wonderful. Wonderful and brilliant he may be, but his bedside manner is lacking. At any rate, I felt myself smirk a little inside, when he was forced to say, “Okay–so you are having a little bit of a problem.”

Then it was on to the examining table. He had her hold out her hands, and he flipped his hands from one side to the other, and then asked her to do the same. She made it look more like a game of patty cake, and ended up clapping her hands on one part of it. Then she laughed so cutely-(but I know it was from embarrassment.) She would certainly worry about this later, I knew. A few more tests of coordination,(touch her nose, and then touch his finger) went pretty well. She was on Aricept for a short while, but it caused horrible side effects, and now she is on another drug. She is slowly building up the dosage, watching for more side effects. He said that there was another drug generally used with the new one. It was a patch to be worn daily. (More meds…) He gave her a sample box.

He ordered a liver scan, and a MRI brain scan. We went to the X-ray department to fill out the forms. (Another big challenge for both of us, because I have to get some of the information from her.) She was to bring a list of her medications, and one of all her surgeries on the day of the MRI. I’m not kidding you, when I say that we need a secretary. So much paperwork constantly.

What I am noticing at home is that she doesn’t feel like cleaning the house properly. (She used to have everything smelling sweet and clean.) I have asked her repeatedly to let us get some help for her in that department, but she refuses. I have tried to do a lot myself, but I cannot do all that I need to do with her, and my own house and family, and do all her daily housework also. (She doesn’t want me to, though I try to do as much as I can.) She does get her laundry done. She has always taken pride in the way she does her laundry, and the way she folds it. Eventually she gets her dishes done. She is very good about keeping herself bathed and presentable, so that’s the most important.

I say all these things to let you know, that there are issues that come up continuously when you are a caregiver, with an aging parent. You are hesitant to address some of them, for fear of hurting the person’s feelings, and yet you are worried about the situations.

One night she actually went to the door at 9 p.m. and a young man she had known when he was little, (but isn’t anymore) was there asking for money. She told him to stay there, and she would be back. He had walked a little ways down her hall when she came back. She gave him $10.00. She told me she was scared. She said she wasn’t telling me to worry me, but that she wanted me to know. I calmly tried to tell her to not ever open the door, unless she knew that a certain person was coming, and had told her so in advance. Then I said, we (family) will always call, or call out to you. Anyone else can go away and call, if they really need to reach you. She agreed about the nighttime visitors, but still insists on going to the door in the daytime. (We all know that no one is safe just because it is daytime anymore, but once again, she is stubborn, and insists on answering the door when it’s daylight.) I told her that when my daughter was little, I taught her to be very quiet when the doorbell rang, so that no one would know we were home. I never answered the door unless I knew a certain person was coming. It’s not safe to just open the door anymore. (Recently, there was a home invasion in our neighborhood. People answered the door at about 3:00 a.m., and the intruders pushed right in, and tied up a lady and her grown son, and robbed them. But there have been robberies in our town in the middle of the day as well.

Okay, so I know you’re tired of reading this. I use my blog as therapy sometimes. It’s a way to write out all my frustrations.

I love my mom so very much, but I hope that when I am older, I will not be so stubborn. She fights against so many things, and it leaves me feeling totally helpless. I am worried about the future, and how much longer she can live alone, and I am worried about whether I can care for her properly at my house, as time goes on. I guess it depends on how feeble she gets, and how her mind is. She definitely has a mind of her own about so many things.

I guess that I am sad that she has to get old and frail. I worry so much that I make myself sick. I stay up at night, trying to get my mind off of the way things are going, and all my concerns about her. I am so bonded with her now, because I have cared for her for the past 2 years, and we have been a team. I expect a lot of myself-too much really. The stress of her physical, and now declining mental state, has left me horrified. I think of all the people who deal with this daily, and I think of children dealing with parents with Alzheimer’s, and I wonder how they do it. I have watched several documentaries about it, and there is very little that is sadder.

There are many types of dementia, other than Alzheimer’s, and none of them are pretty. I find myself trying to minimize to my mom what I am seeing, because I know that she knows a lot of it, and is very worried about where it might lead.

I try to give all this to God, but sometimes I get mad. I get mad because my dad died, and he was supposed to be here to help her through old age. I get mad because my nervous system is whacked, and I can never relax. I get mad because life is so difficult right now, and I feel on the verge of collapse. (But I never get mad at her-not where she would know.) God has given me incredible gentleness and compassion for her, and a great love as well. We have not always been this close, but this was something good that came out of my father’s death, and that was that we became closer, and many things have mended between us, just because of our closeness now.

I know that I cannot give her immortality. (I learned this in counseling.) I also know that I cannot make her happy. (Another great jewel from counseling.) I know it in my head, but it just hasn’t reached my heart yet. I want to cry a lot of times, but lately I rarely do. I guess it takes too much energy that I don’t have.

I do have a brother. He has lunch with my mom every day that he works, and he does the grocery shopping, because I had a torn rotator cuff that has left my arm very weakened. But she and I do a fair amount of grocery shopping ourselves. There is always butter, milk, eggs, bread, etc., that is needed. So we supplement his larger trips. Other than the groceries, and a few handyman jobs, I do feel the greatest burden of her care is definitely on me. I don’t mind that, (I love her greatly) but I am just beginning to feel the extreme pressure of it all, and more than that, am worried about where it goes from here.

My greatest self discipline will be to take it one day at a time. I cannot solve next week’s problems, or next year’s. So I must live in the present, and deal with today’s problems, trusting that God will give me the grace I need to face the rest. Whenever I am down, He will always raise me up…

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13 Comments

  1. I’m not a doctor, but I am an experienced caregiver. Your Mom is almost certainly slipping into dementia. This doesn’t have to mean Alzheimer’s Disease, but in some ways dementia is dementia. The clock face problem is a clue. The unreasonable fear is an even bigger clue. Any other instances of “confusion” are clues.

    My own mother lived with my wife Marge and me for nearly three years while dementia took its toll on her. For a long time we refused to “see” what we were seeing every day. The tendency of adult children caring for parents is always, always to hang on too long.

    The truth of the matter is probably that you and your Mom have reached the point where you will be making more and more of your Mom’s decision. Some people call this “parenting a parent.”

    Marge and I had our eyes opened about dementia by a book entitled The 36-Hour Day. In reading the book, we found that we were on a well-traveled road. There was comfort and strength to be gained from that insight alone.

    Never forget that you are your Mom’s protector now. When you make decisions for her (even decisions she doesn’t like) you are doing it out of love and the sorrowful recognition that she no longer always knows what is best for her.

    Pete

  2. LONNIE,What an incredible song & video. What an incredible daughter you are to your mother, you know & i know you will be rewarded one day. My parents are both failing, my mother has neoropatyh(?) in her feet, then SHANES accident , she just mostly stays in bed. My wonderful husband goes & checks on them every morning, i clean their house, needlees to say slacking alot lady.My father is on real strong chemo for bone cancer. So i somewhat understand your challenges, but you are sure doing them alot better than i am ! Where do you get the energy??? I am always praying for you & your family, hoping you can find away to get your rest.I say turn that song on close your eyes & listen to it over & over. What relaxing & comforting words. LOVE , BIG HUGS , PEACE TO YOU & YOUR FAMILY , LOVE SANDY SHANES MOM .ps havnt spurged on any jewelry yet lol .

  3. Sandy: Thank you for your constant encouragement. Sounds like you also have your hands full. My mom has the diabetic neuropathy also, and restless legs syndrome. I have been meaning to ask you about your dad. Tell me more about his condition when you are able-how long it has been going on, and what they are saying about it.
    I love Josh Groban!!! Isn’t that the greatest song? I agree-close your eyes, turn it on, and take a deep breath, trusting God for strength.
    How are things going with you? Have you talked to Austy? Will you get to often?
    Good job on the jewelry! LOL! 🙂 Go to Sorrelli online, and check out their pictures, to get an idea of how beautiful some of it is. Or maybe not…(Grin.)
    I love you lady! Lonnette

  4. Pete: What a thoughtful and lovely post! Thank you so very much for both your wisdom, and your knowledgeable assessment. It always makes me feel better to hear from someone who has been on this road. I think the issues of caring for an elderly, sick parent are heartbreaking almost daily. Though there are times when we forget it all, and just laugh! We DO laugh a lot, thank the Lord! We always picture my dad looking at us from heaven, and having a good chuckle about “Lucy and Ethel.” Thank you so much for the book suggestion. I will get that one as soon as possible.
    Yes, the decisions are getting more difficult, and at times there is a tug of war. I try to give her all the independence I can, while still watching over her as closely as I can. At times, I find it most overwhelming, and I also find that I am very isolated in my understanding of what is happening to her. Seems like I keep trying to convey it to others (family, doctors, etc.), but many times they just don’t get it, and I feel like I am screaming into a howling wind.
    Thanks again for your comments! Lonnette

  5. Lonnette,

    My dear, sweet, tired friend, I think of you often. I recall the years I took care of my mom every time I read your posts. All so familiar.

    I miss my mom so much I can hardly stand it some days. As I’ve told you before, she was not an easy mom or friend, but we found a place of acceptance and friendship in her later years. I know if she were still here with me, she would hold me when I cry myself to sleep, searching my way through Owen’s loss. The two of them were oil-and-water AND kindred souls. Hard to believe they could be both, but it’s true.

    I know your fatigue. I know those visits with your mom to the doctor’s office, and I know your hope and your disappointments at the outcomes.

    On occasion, when I was most desperate, I would tell my mom how much I NEEDED HER. She would then rise to the occasion – weak as she was. Her spirit rose high enough for me to stand on her shoulders for just a moment, and I found rest enough to go the distance that was sure to greet me with the next day’s sunrise.

    My mom’s favorite old hymns have sustained me through many hard times. I wish I could find my old hymnals. I think I left them in the bench of my last piano (which I left at our last house in Bellingham, WA). That piano actually belonged to my sister-in-law, and since it was her house that we were renting, and our departure was premature, we either sold, gave away, or simply left, many of our favorite belongings. Stuff is stuff, to be sure, but I miss my hymnals.

    Thank you for posting this song. I burst into tears in the first few notes, and have only just recovered enough to write. YOU, Lonette, raise me up, along with my god, my son, my mom, my dad, and all the others who have gone before me.

    I’m sending you my prayers for a restful night, one in which you may dream of the peace that is so evidently evading you at this very moment. Breathe deeply, relax your toes, and work your way up to your head, and those ever-present thoughts of “what’s next?” Let go, and let…

    Linda

  6. I ran across your blog just now while searching for possible information about how to get my mom with dementia (now living since November in an assisted living cottage) to remember to use her walker. She’s starting to fall more often and I fear she’ll break something. I see her every day and talk to her about using her walker to go to the bathroom, but after she takes a nap, any memory of my admonitions are gone.

    I completely understand your exhaustion with caring for your mom. I began caring for my mom in June (a neighbor had been doing her best until then) when my husband retired 3 years early so we could move up to north Idaho from Wyoming (there was no way my mom would move to where we were living). It first occurred to me when we drove up for Mother’s Day how bad her dementia was because twice during our visit she asked me who I was (and I’m an only child). All during the summer and fall she told me that I certainly had a family resemblance, but I wasn’t her daughter (I almost thought I’d been adopted, but then recalled all of the horror stories of her pregnancy she liked to tell me while I was growing up). I agree with an earlier commenter about your reading The 36-Hour Day. I read it. Mom didn’t want to go into assisted living, but I began talking to her about it, then took her to look at a facility. I think she realized how difficult caring for her (and her 9 cats and old lame dog) was for me. Her doctor told me that I would know when it was time. I smirked inside, “yeah, right,” doubting that something would go “ping” in my brain to say, “Now is the time for her to be cared for by others.” She began having hallucinations of people (and my deceased dad) crowding her house. Although I arrived every day to make her supper and sandwiches and fruit for her lunch the next day, and gave her her medicine, she would call me often. She was put on an anti-psychotic for the hallucinations. She called at 5:30 in the morning, begging me to come and protect her (very confused and scared). The next night she called at 3 a.m. to ask how I was doing. And the last night I left her alone in her home, she called the sheriff’s department to tell them she couldn’t find me. I received a call from her house at 4 a.m. . . . from a deputy sheriff. I began staying with Mom 24 hours a day (and on that first day, my brain went “ping” and “now it is time to get help for Mom.”) 5 weeks later, her name came to the top of the waiting list for assisted living. It was during that 5 weeks that I discovered that at night Mom became afraid of the house that she and my dad had built with their own hands and which she’d lived in for 50 years. She felt it was evil, that it wasn’t her house, but somewhere unfamiliar to which I’d moved her. And more incidents than we have time for now.

    Although there are some things about assisted living she doesn’t like, she no longer lives in fear. I still have worries and guilt, which I compensate for by visiting her every day, helping her brush her teeth, arrange her for her nap, hold her hand. She doesn’t really know where she is and sometimes thinks the dog needs letting in (he went to a good home and my husband and I take turns feeding and caring for the cats at her place). But she doesn’t view me has her antagonist (as sometimes she did during the summer and fall – she’s turned her attention to the attendants for that.) I don’t cry every day any longer – just every few days as I allow myself to remember some sweet memory from our early times together. When you used the word “horrified” I knew exactly how you feel. I can’t believe this has happened to my 82 year old mom — her mom lived to be 97 and had her wits about her.

    So, I wish you decisiveness (which I never thought I’d discover in myself – Mom could always dominate me). And I wish you the means and ability to find a good facility for her when the time comes. And I wish you the ability to begin “letting go” as a new friend, whose mom lives with my mom, described it when we allow others to take the responsibility that we believe must be ours.

    P.S. the book also says that it’s easier to have our parents move into assisted living while they still have the ability to adjust to a new environment.

    Karen

  7. Karen: Thank you so much for your thoughts on all of this. I am so sorry for the decline of your mom, but want to say what a wonderful, caring daughter you are. I can sense your absolute love for her in every word. It seems that your choice to make the transition when you did, was a timely one.
    In talking to my counselor this week, she agreed with Pete’s comments here, that we tend to almost always wait too long.
    I have been through an agonizing weekend of tears and pain, thinking about all of this, and even trying to find some immediate ways to ease my stress in caring for her. I am screaming for help now, as I can no longer do this on my own. My husband has agreed to escort us on our days out, in order to help me get her in and out of places. Then we can shop, and he will pick us up. She does well with a buggy, but she will not use a walker, and she is so off balance that I can hardly hold her up safely anymore. She is very stubborn though, and she will not like the change probably, but I have told him that I can no longer manage all this on my own. He has also agreed to help me with the errands, or get someone to help with some of those. As you know, I have to be with her at doctor visits, and so many other things, but any help at all at this point would be wonderful. My heart physically aches, and my emotions are all over the place.
    I hope you will stay in touch from time to time, as I feel we have a great deal in common, and since you are a little farther down the road, your advice would be so helpful. Thank you for commenting, and for being so understanding.

  8. I’ll address one issue tonight Sometimes it’s too much to try to absorb more than one bit of advice at a time. So, let’s concentrate on getting your mom to use her walker. My mom wouldn’t use hers, either. She used a cane, which I felt was dangerous for her. She was actually afraid of the walker and got it confused with the motorized chairs the grocery stores have. Your mom is afraid of not being able to handle the walker, so it’s easier to just say “No.”

    I put the walker in the car without telling Mom and we went to the store. I took out the walker. “I’m not going to use that,” said Mom. “Okay,” I replied, “I’ll just push it while you push the cart and when you get tired, you can sit in it.” Her walker has a seat. She has a bad hip, so she tired pretty fast. There was the walker for her to sit on. She liked that. Maybe it took a few patient tries on my part, but I eventually had her pushing the walker while I pushed the cart. Then I’d quickly put the brakes on the walker when she wanted to rest (she still can’t remember to put the breaks on). When she pushed the walker, I’d put her purse on the seat, so she could see it (fear of losing her big purse was always on her mind). When she’d sit down, I’d put the purse on her lap to hold on to. I’d go get a few things for the cart while she waited.

    I also took the walker to a doctor’s appointment, took it out in the parking lot, put Mom behind it and told her to push it to the sidewalk. She started getting used to the idea that she could stop and sit down when she was tired. Note: Try to get your mom to stand as close to it as she can while pushing, not a couple of steps back so that she’s bending over the push handles. You should practice yourself on it, so you’ll understand it. Mom never would use the walker in her home.

    As to my issue of Mom not using her walker at assisted living, today the facility nurse had the attendant put a little monitor next to Mom, with the little string attached to her clothing. When she gets out of bed or gets up from her chair, the string will separate, and the monitor will go off. And, hopefully, an attendant will quickly come into her room to make sure she uses her walker.

    Anyway, take one day at a time. Tell yourself that the next day might be better. And when you have time, consider whether your relationship with your husband is under a strain because of the stress you’re under with your mom. Even your mom would tell you, if she could, that your marriage must come first.

    Karen

  9. Karen: I’m sorry for taking so long to get back to you. I love your suggestions! Please read my post titled “Admitting I Need Help” and you will see what I went through recently trying to find a stroller at the mall, (since she wouldn’t use her walker.)
    She did agree after that experience to use the walker in the mall stores (where there are not the traditional shopping carts). That’s progress, and I will continue to take to heart your suggestions as well. This is a long journey, and I need all the help that I can get, and it is appreciated so very much. Do you have any suggestions for errands-how to make them less time consuming? Seems like that’s all I ever do, but my husband has agreed to let one of his employees at the office, who does their errands, to help take some of the load off me. I just can’t do it all alone anymore! Thanks so very much for some great advice. Shout out to me anytime! Hugs-Lonnette

  10. (I get mad because life is so
    difficult right now, and I feel on
    the verge of collapse.) this statement has his home with me, I’ve been taking care of my Mom for 10 Months now, and watching her decline before my eyes is every hard. She has no right now
    memory memory, and constantly
    repeating myself is straining.
    I went away for the Holidays and when I got home my sciatia blew out and it has affected my leg and Im unable to drive or walk for any length of time at all. I just feel so helpless at times, all my children live out of state and my sister is helping when she can. If it wern’t for my chruch family I would be in big trouble. Thank God for Reading you post. Thanks for letting me vent.

  11. Hi Lonnette,

    I couldn’t locate the subject “Admitting I Need Help,” but got sidetracked on “Donovan.” My 36-year-old son is named Donovan, and never had a nickname. He’s always liked his name. I’d told Mom that if I had a boy, I’d name him Michael because that’s what she would have named a boy if she’d had one. “Oh, I don’t care for that name, anymore,” she said. “Why don’t you call him Donovan.” I had a couple of Donovan albums, but never considered that as a first name. I’m not certain Mom connected that name with the singer, because back in the 50’s she’d entered a “Name the Race Horse” contest in a magazine, and had entered Donovan’s Pride as the name. Why do we remember such oddities?

    I don’t have much advice regarding running errands for your mom. I would do the grocery shopping for Mom on my way to her house. She hadn’t been eating properly when we moved up from Wyoming, so I began making her meals. But I quickly learned that my cooking in her kitchen was rife with conflict between us – and took too much time. So, I just bought Marie Callender frozen meals. I know you can’t feed those meals to a diabetic. Does your mom fix her own meals, or do you have to prepare her food? Are there frozen meals for diabetics?

    You seem to be doing more things with your mom than I did during those months of caring for Mom in her home. We’d just sit on the porch in the glider. A lot of doctor’s appointments, yes, but then we’d come home because it exhausted Mom. So, my question is this: Taking your mom shopping and on picnics, etc. – are these outings she really enjoys and are necessary for her happiness, or would she be just as happy spending an hour with you on her porch? Can you cut back on your taking her out to lower your stress? I read about your taking her to her doctor at around 1:30 and not getting back to your home until after 10 p.m. what with supper and shopping. Was that as exhausting for her as for you?

    I will try to read more of your writings when I have time. Besides spending each afternoon with Mom, I’m still selling used and rare books on eBay, as I have for 10 years. Fortunately, my husband Jay writes the descriptions now that he’s retired and takes the photos. I enjoyed your bit about baths and tea. I agree that it’s very necessary to do something pleasant each day. I take a Dove ice cream bar to bed with me after my bath.

    Karen

  12. Hi Karen: “Admitting I Need Help” was the February 7, 2008 entry, so it’s not very far from the latest post. As to shopping, yes, my mom does need (and very much want) that one day for errands and shopping. Generally we go one place, then to supper, and then one other place. (Sometimes it doesn’t work that way, depending on what she needs. But now that my husband has agreed to give me some help (through his office people) for some of the errands, maybe it will get better for us. Our goal is to have a pleasant evening out, as she does not driveanymore, and goes stir crazy from being confined to the house, as I know I would also. Other times I just go and watch tv with her, or bring her to my house, as I plan to do on Valentine’s. Tomorrow we go to hear the results of a brain MRI and a liver scan. The balance problem is the reason he is doing the brain MRI. I know that confusion is not something you see on a scan, but at least he’s doing something. You may have to take a couple of days to read my post, “Admitting I Need Help” as it’s rather long, but I think you will see we are making some improvements. Thanks so much for your advice, and I would welcome hearing from you anytime about what has worked, or is working with you and your mom. Hugs-Lonnette

  13. I did finally find the shopping trip and stroller story. Your mom seems to enjoy shopping. As for your toilet, there is a high toilet seat that you can simply place on your toilet – it has down-ward vertical sides (I think) for stabilization. My neighbor used one when her mom lived with her. Look for it on the Internet and maybe it will point you to a nearby outlet.

    Karen


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