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Welcome to Elizabeth's World: A Family Caregiver's Journey with Home Care

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by Elizabeth Shean

On Sunday at 11:17 p.m., my home’s security alarm began shrieking at top volume. The piercing blare sent a shot of adrenaline through my core and woke me from a sound sleep. What on earth is going on? I wondered in my groggy state. And why is Mom shouting my name at the top of her lungs?

Propelled by the adrenaline, I raced from my upstairs bedroom toward the stairway to get downstairs and disarm the alarm. The scene took another surreal turn as I discovered Mom seated on the top step - a place she should not be, since she is forbidden from climbing stairs due to weak legs. Looking anguished and confused, she said, “I got up to go to the bathroom and for some reason I pulled the front door open. The alarm is going off. And also, I fell.”

My heart beat even faster as my brain tried to make sense of this new information. I instructed Mom to stay seated while I loped down the steps toward the alarm keypad. The monitoring company was just ringing me, and I gave the code word to turn the alarm off. Blessed silence returned.

I walked back up the steps to Mom, who was struggling to stand up. “Please just stay there for a moment, Mom,” I implored as I sat down next to her. I wrapped my arms around her shoulders and pulled her head toward me, where I kissed her soft, graying hair over and over, relieved she appeared to be all right. “Are you hurt?”

Very nearly in tears, Mom kept apologizing. “I’m not hurt. I’m so sorry. I don’t know why I went to the front door instead of the bathroom,” she lamented. “I’m so sorry I had to wake you, but I knew the alarm was going to go off. I knew you’d be upset.”

I wasn’t upset, but I was thinking ahead to next week. I’ll be gone for four days (and nights) to attend a conference. Will it be safe to leave Mom alone all night? I wondered. Or should I schedule a caregiver to stay with her?

Welcome to my world.

And welcome to my blog. Over the coming weeks and months, I’ll be chronicling life with my mother, who is 83 years old and has dementia. Let me tell you a bit about how we got here.

In 2013, due to a complicated series of events, my late husband and I packed up our belongings and moved from Albuquerque to Houston. Mom had been living in her own house, a couple of blocks away from us in Albuquerque. But she couldn’t drive anymore, and there were no other relatives in that city to care for her. So we decided Mom should move in with us.

The transition hasn’t been easy. Mom’s loss of independence has been stressful for her, despite what she describes as a “beautiful” living situation in our large, two-story home. For me, the loss of privacy has been depressing, since I like to keep to myself. But somehow we manage.

Luckily, we had the foresight to engage a Home Instead Senior Care® CAREGiverSM, Anita, to help with Mom’s care. Anita is a lifesaver. Her assistance means I don’t have to bathe Mom, which might be a little embarrassing for both of us. Anita also does all of her laundry, cleans the downstairs and helps Mom with tasks like organizing her closet and filing cabinet. Mom loves Anita.

The name of this blog is “To Us, It’s Personal.” That’s the motto of Home Instead®, and it certainly describes my caregiving journey with my mom and Anita. I hope you’ll take this voyage with us as I chronicle it in these blog posts - and by all means share your own thoughts and reflections below. We’re all in this together.

Comments

Posted by Cyndie Henry (September 15, 2016)

I have been my Mom's sole caregiver for the past 5 years. Our journey started when I came home to care for my Father who had lung cancer and I noticed that something wasn't quite right with my Mom. After a few trips to Doctors we found out that she had Alzhiemer's.... Before my Dad died I promised him I would stay with her and keep her home so he wouldn't worry about her. Last Sunday on 9/11 my Mom at age 90 lost her battle with this dreaded curse and is now at peace. I can only say that as hard as the journey was I am glad I was with her, that she was able to stay home and never see the inside of any institution and I would do it again in a heart beat. The challenges are many but the rewards are great... Good luck on your journey.....God Bless....

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Posted by Elizabeth Shean (September 19, 2016)

I'm so sorry for your very recent loss. I can't imagine how hard it must be to lose one's mother, and yet I do think about this because I know that's where my caregiving road is leading. I appreciate your kind words of support and send you blessings and peace.

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Posted by Theresa (September 27, 2016)

I have cared for mom when she was diagnose with lymphoma cancer, February 2006. I walked through the agony of chemo and radiation treatment with her. She would be up at 2, 3, 4 am, I would be beside her on the bad rubbing her back consoling her. She is in remission now, but I keep vigil eye on her. Mom was regaining strength when she had stroke in August 2009. The stroke weakened her left side (to this day). I helped her daily with simple chores as dressing, bathing, etc. I was there for all her needs. I got tired, flustered at family who volunteer to help but never appeared. Mom had a difficult time adjusting to her lack of muscles and strength. We would talk and encourage each other. Time went slow. In September 2014 mom had a heart failure I along with doctors convinced her to have the heart monitor implant. Oh, by the way...Mom is 93 years young. Why am I writing my thoughts! I love my mom very much, but I need an outlet. I've been investigating home help services. How highly do you recommend Home instead company?

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Posted by Elizabeth Shean (September 27, 2016)

Theresa, I'm in awe of your strength! Taking care of your mom for 10 years earns you a special place in heaven. Your mom is very lucky to have you! In answer to your question, I can honestly say I've been very happy with the care provided by our Home Instead CAREGiver. In fact, everyone in the local office has been a delight to work with. I can highly recommend Home Instead. Thank you for reading the blog and sharing your thoughts - and blessings to you!

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Posted by Michelle Szot (September 29, 2016)

How blessed all of our mothers are that they have daughters. My mother is 89 and has advanced dementia. We have good days and bad days. My 2 sisters live in the same town and they are a life saver. One does all the medication-goes there 2 times a day to make sure she takes her meds. Another does the cleaning every week. My self an legally responsible for mom, take care of all house hold needs and bills etc. @ of share the doc appnts. I do not live in her town but am an hour away and still employed. Every Thursday eve after work I make her dinner and bring it to her-do her pills and hang out do laundry. Every Friday I call it my mommy day-I pick her up from her hair appnt and we go to lunch-shop-pretty much what ever she wants. As hard as it is some days-I too promised my mother when she was in sound mind that I would never put her in a nursing home because her wishes are to die at home. I too may need professional help so it's good to know that the at home care is good. God bless you all and your mommy's. We get one chance in life to matter to them. ")

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Posted by Jerry Horn (September 29, 2016)

It is hard for me not to be somewhat envious of those of you who are still able to effectively communicate with your loved one. My wife has early-onset Frontotemporal Dementia with Parkinsonism and Primary Progressive Aphasia. Unlike many of you, I am unable to have intelligent conversations with my wife 85%-95% of the time. I am her full-time caregiver, and she is not able to be alone. If it were not for some great adult day care centers in our area, I would feel very trapped. I know that caregiving for someone with dementia is never easy, please take comfort in that you are still able to have two-way conversations with your Mother.

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Posted by sandy (September 29, 2016)

I am both encouraged and wearied by everyones caregiving stories. While my dad is my moms primary caregiver, he is losing his eyesight so needs the assistance my sister and I give each week. Mom, age 88, was diagnosed with lewy body dementia just over a year ago. The disease progression has been gradual, yet obvious. I feel we are early into a long journey. So far dad has not been open to the idea of bringing in any care taking aside from my sister and me. It weighs on my mind heavy. I take comfort and strength from my relationship with Jesus who is intimately acquainted with Mom and knows all the days ordained for her.

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Posted by Iris (September 29, 2016)

I'm the only caregiver of my husband who the Doctors diagnose him with Alzheimers. He has a past medical condition of Post Stress Trauma Disorder. I have a full time job as a nurse. He used to assisst an Adult Care Program 3 days a week payed by VA. The Program told me today that he won't be able to go because some approval from the goverment. Now the worries begin: how Im going to handle this? What about his safety? since we do not qualify for Medicaid or any other programs and savings are running out....,

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Posted by Steve Ayres (September 29, 2016)

My husband and I brought my then 78 year old mother from East Tennessee to Southern California to live with us two years ago. This was after the unexpected passing of my father. Mom was diagnosed with Alzheimer's/Dementia sometime before all this. She also has Essential Tremors which are almost as much a hendrance as anything else. She is now 80, and steadily deteriorating on both fronts. She frequently gets lost going from her room to the bathroom, which is next to her room. Her confusion about living in California rather than Tennessee has escalated, and she frequently does not remember where she sleeps, asking me about that while we are sitting in her bedroom. The tremors have increased to the point that she usually needs assistance to eat, but can still manage most days getting herself dressed. My husband, Tony, is home with her 24/7, which is a godsend. He disburses her meds, brings her breakfast and lunch, and checks on her periodically through the day as well as sitting with her to converse. I do my best to handle these responsibilities on the weekends. The last two times she was hospitalized for UTI we brought in outside help for her in the morning and the evening. This has been tapered off due to the expense, and her improvement in dresssing herself and overall increase in her stability and balance. I am away from home approximately 12 hours daily due to length of commute. This leaves me very little time in the evenings to spend with both Tony and Mom. I often feel like Soloman having to allocate who gets how much time, and trying to balance to both. How do you get past the frustration and guilt with not being able to do more? How do you keep from being so angry you can spit because siblings are 1,000 miles and more across the country and can provide no physical help at all? How do you decide which "battles" to confront as far as attempting to correct problems (incentence, not drinking enough water) with a person who does not remember things from moment to moment? Overarching all these things, how do you live with the fact that this is no longer the mother who raised you, who used to take great pride in her appearance, and who kept up with family birthdays, anniversaries and other important dates? In short, how do you survive work, home, finances, and caregiving and remain sane?

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Posted by Steve Ayres (September 29, 2016)

My husband and I brought my then 78 year old mother from East Tennessee to Southern California to live with us two years ago. This was after the unexpected passing of my father. Mom was diagnosed with Alzheimer's/Dementia sometime before all this. She also has Essential Tremors which are almost as much a hendrance as anything else. She is now 80, and steadily deteriorating on both fronts. She frequently gets lost going from her room to the bathroom, which is next to her room. Her confusion about living in California rather than Tennessee has escalated, and she frequently does not remember where she sleeps, asking me about that while we are sitting in her bedroom. The tremors have increased to the point that she usually needs assistance to eat, but can still manage most days getting herself dressed. My husband, Tony, is home with her 24/7, which is a godsend. He disburses her meds, brings her breakfast and lunch, and checks on her periodically through the day as well as sitting with her to converse. I do my best to handle these responsibilities on the weekends. The last two times she was hospitalized for UTI we brought in outside help for her in the morning and the evening. This has been tapered off due to the expense, and her improvement in dresssing herself and overall increase in her stability and balance. I am away from home approximately 12 hours daily due to length of commute. This leaves me very little time in the evenings to spend with both Tony and Mom. I often feel like Soloman having to allocate who gets how much time, and trying to balance to both. How do you get past the frustration and guilt with not being able to do more? How do you keep from being so angry you can spit because siblings are 1,000 miles and more across the country and can provide no physical help at all? How do you decide which "battles" to confront as far as attempting to correct problems (incentence, not drinking enough water) with a person who does not remember things from moment to moment? Overarching all these things, how do you live with the fact that this is no longer the mother who raised you, who used to take great pride in her appearance, and who kept up with family birthdays, anniversaries and other important dates? In short, how do you survive work, home, finances, and caregiving and remain sane?

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Posted by Aidan Licari (September 29, 2016)

I am just "beginning" my journey with my wife of 82 who shows signs of dementia (I am in the process of her being seen by a neurologist). I am 83 and have been in the field of education for all my life...I love teaching but now this has ben "taken away" from me due to my wife needing constant care which I am presently providing.. My step daughter(who does not live with us) has been a God sent in helping to care for her mother but her negative attitude negates all the good she does (have you ever seen "One Flew Ove the Cukoo's Nest?--Nurse Rachet aka in this comment as NR)...NR feels she can get my wife, Ruthie, to take her meds if she FORCES them on her; I, on the other hand feel that "sweet talking" to her accomplishes the goal of Ruthie aka R taking her meds. So what I am really up against is "taking care of two ill women!" One of my most frustrating experiences is lack of adult conversation. I feel that, although I can handle things right now I am going to need some real help. R, however, would not hear of that so I lie awake at night trying to figure out where do go from here. I am very grateful for the blog/comments printed here and will keep y'all in prayer (there! I've given away my geographical location to y'all!! :) God bless y'all!

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Posted by Lee Mason (September 29, 2016)

I have just finished reading, Creating Moments of Joy and it has been the most helpful book I have ever read on caring for loved ones with dementia. I read the 36 Hour Day, and it was helpful, but Creating Moments of Joy changed my total attitude about the time I have left with my 91 year old mother who has Alzheimer's. My mother is receiving care at a lovely memory care facility for 26 persons only. I chose this care because I wanted our remaining time together to be free from daily angst and filled with "moments of joy." When my father was caring for my mother, she refused food, medication, bathing, and weighed 85-90lbs before she moved nearer me. I knew that she would not listen to me either or anyone if she were living in our home. We found a lovely Memory Care Facility that I would never call an institution. My father wanted my brothers and me to care for my mother at home, but due to distance and work obligations, we knew this was impossible. I searched, visiting in 3 memory care facilities near our home before deciding which would be best. My mother now weighs 135 lbs and has settled in nicely. She is not isolated, but also not overwhelmed. I am able to visit almost daily. Because she is there, our relationship is positive and my goal is always to have moments of joy with her. I am hopeful my father, who died Oct 2014 is looking down and proud to see that Mom is happy, safe, and content (for the most part-and you all know what I mean) . Do I feel guilty at times that Mom is not living with me? Yes, but I know, though a difficult decision, it was the best for her and for me. We have many moments of joy together on my visits. At one time we had caregiver services from Home Instead with her in the facility who were my eyes and ears. Some were great, others were not a good match with my mother, but overall, the local Home Instead was always responsive to our needs and concerns. Please read, Creating Moments of Joy. It will change your life.

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Posted by deborah halpin (September 29, 2016)

I went from wife to caregiver about 3 yrs ago. We only have social security , so we struggle for money. It is a very tough road. Fortunately my husband is a really nice guy but life has really changed.

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Posted by Lana Stevens (September 29, 2016)

Oh, my! What a gift & eye opener this is! Keep it going forever.

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Posted by Linda Grant (September 29, 2016)

I have been my mother's caregiver for 11 years, she was diagnosed with Dementia and has short term memory loss, hearing loss, and 94 years old! She is the best mother anyone could have asked for and is such an inspiration to our family. Unfortunately, sometimes family members have their own agendas and I find myself going at this practically solo😢. I have been encouraged by the information shared by others and the love I have for my mom. Is our journey difficult, absolutely!! My mother was a very independent, hardworking, single mom as well as a very loving positive mother. Now she is dependent and very sad about losing her independence. We take one day at a time and cherish every second we have to enjoy each other's company even though she has limitations. I have been blessed in many ways for the sacrificexI have made for the sake of my mother staying in her own home. To those who have made that same sacrifice, in the end your conscience will be clear and you will be at peace along with your loved one.

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Posted by Karen (September 29, 2016)

Back in 8/2013 my father was diagnosed with a compression fracture of the spine. 4-6 weeks recovery so they said. They were wrong, for 3 years my mother,my husband and I took care of him. In 4/2015 my mother was diagnosed with multiple myeloma. My husband and I took care of both of them. In December of 2015, we noticed that my mother all of sudden was forgetting to give my dad his pills and to change him at lunch. I asked the doctors if the chemo was the cause of her memory issues. Well she could have chemo brain. Jump ahead10 months, no chemo and her memory is worse. In the meantime I was still caring for my father, showering ,diapers, meds, food...the works. In may he fell, fractured his hip, long and short of it, he passed away on august 14, 2016. I can't tell you how hard it was to have to tell mom over and over again that dad was gone. In the meantime I applied for medical assistance for mom,but with the little bit of life insurance my dad had, mom is over the financial eligibility by a few thousand dollars. This money will run out in about two months. I applied for the grant for home instead, I hope she qualifies. I go to work everyday for a break, since mom and I are no longer mom and daughter,but more like I'm the mom and she's an infant. I need help! I'm paying for home care but I can only afford 3 hours a day, 3 days a week. My point is, we are all trying to keep our loved ones out of nursing homes, but its so difficult to get the financial help we need to pay for someone to care for them while we work.

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Posted by Sunny (September 29, 2016)

It must be so hard for you all! I love my parents and wanted to be able to bless and help them. However, my mother really is not a "people person," thus refused to move closer to any family member, though at least 3 of their 5 adult "children" offered. Two of us were willing to let them live with us for free. It was hard, knowing she did not feed Dad well, and threw fits when he could not get to the bathroom in time. (He has had at least 2 strokes and 2 heart attacks, has diabetes, and high blood pressure.) Neither of them could get him up, once he fell. He was in and out of the hospital, and finally a nursing home. He is there full time, now. So far away! But, at least he is getting the care he needs finally. Mom, too, has gone to the hospital, and then to the nursing home on and off. She never tells us what is going on. It is very frustrating, and painful. I am a widow with children, and cannot afford to drive to their state at this time. It is hard. At least I would like to see my dad, even if my mother does not want to see us. I love them both. They are my parents.

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Posted by Meg Coogan-Blake (September 29, 2016)

Please let us know if you get any answers to questions that plague us all. My thoughts are with you.

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Posted by Carla Mathis (September 30, 2016)

These stories touch my heart. I have been taking care of my sweet mother for the past 9 years. She is now in late stage Alzheimer's. Bedridden with contracture & full care. She is essentially my baby now. It has been a long hard journey with a rainbow of emotions. We have learned to laugh when we can & cherish every day. She can no longer speak. She understands us, but can only say gargled words back. Music is a large part of our day along with lots of pampering. I have 2 amazing caregivers that split the week while I am at work. I take care if her nights & weekends. My sister stays 2 nights a week to give me some rest. It is amazing what the body & mind can do when you love someone endlessly. God gives me strength to continue this battle with this vicious disease. It has taken my sweet Mimi little by little, but to see her sparkling blue eyes and the occaisional giggle ignites me. She has been at home from the beginning 9 years ago & will be home till God takes her home. I pray for all families that have loved ones with this disease. My advice to you is pray for patience, show nothing but love & kindness. There are very difficult times and times you will question if you can do this. You can with prayer & get the help you need to balance your life. Don't let this disease destroy your family. Look at it as a battle that you will fight till the end. God Bless.

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Posted by Elizabeth Shean (September 30, 2016)

I wanted to pop in to thank you all so much for reading and taking time to comment. I feel the beginnings of a real community forming here. And I also want to tell each of you how much I admire you for taking on the caregiving role: for a spouse, for a parent, for anyone. You each deserve recognition for your selflessness. I certainly hope to use my voice to represent your own in a spirit of camaraderie. Together, we can do this! Sending you each a hug filled with love.

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Posted by sue grethel (October 07, 2016)

Have you contacted your congressman. Especially in an election year, he/she might be willing to help. Not being there for our vets is a disgrace. Prayers

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