Taking Care of My Dad, - An Adult Daughter Takes Care of Her Elderly Father With Alzheimer's Disease

My dad and I on a "escape from the hospital trip to the park" during an extended hospital stay in January of 2010.  Twila Reed Park, Anaheim, California.
My dad and I on a "escape from the hospital trip to the park" during an extended hospital stay in January of 2010. Twila Reed Park, Anaheim, California. | Source

About This Hub

My father was living alone in late 2006, when a long standing problem with his knee had reached a critical point, leaving him basically unable to get around to take care of himself. With no one else available to take care of him, a decision was made that I, along with my eleven year old daughter and my twelve year old son, would temporarily move up to Orange County, from our home in San Diego, to care for him before and after his surgery. With my husband's naval career winding down, the timing would perfectly coincide with our plans for after my husband's retirement to move back to the the small town outside of Memphis, where we had been previously stationed. Of course, you know what they say about the best laid plans of mice and men don't you?

It was a couple of days after his surgery, he was still in the hospital, and I was at home that afternoon, while my former step-mother was visiting the hospital with my older daughter, that I received the phone call that would change everything. That was the day that I first heard the words Alzheimer's disease in connection with my dad...

It has been three and a half years since I received that phone call, and many things have changed; my return home, seems to have become more permanent, and our retirement plans have pretty much gone out the window. My two older children, who were part of the family discussion and decision making process when we had to make the decision to stay, are now only two and three years respectively from graduating from high school and pursuing their own dreams, and my newborn is now a thriving and rambunctious toddler. My dad has good days and bad days. In the last three years, as the disease has progressed, and more and more our relationship is reversed, I am torn between grief, over losing the father that I have known all of my life, and gratefulness that I and my children have this time with him, because I know that our days are precious and few.

What hasn't changed is how much I love my father.

In the last three years, as I have taken on the role of my father's caregiver, I have learned much about myself, about the strength of the bonds between a father and daughter, and about what being a family caregiver actually means; because although I wouldn't change things, even I didn't realize in the beginning, the extent to which caring for my dad would monopolize my life, nor did I realize the enormity of the sacrifices I was asking of my family.


My Dad
My Dad | Source

Home Is Where Your Heart Is

December 21, 2010

Orange County, California

It was after nine-thirty in the evening, dinner was long over, the dishes were done, my three year old daughter, was bathed and in bed. My fifteen year old daughter, reminding me of my younger self, was curled up in her room with a book, while my sixteen year old son, who despite my warning that he would catch a cold and be sick for Christmas, had spent the afternoon with his friends playing football in the rain, had been asleep for nearly an hour. With my father settled comfortably in his recliner in the living room, sipping his after dinner tea and watching television and the rest of the house quiet, I had slipped off, as I do most nights, to spend some time writing. I had only just settled in and gotten comfortable, when my husband Michael, with an apologetic look on his face, poked his head into my makeshift office in the back of the garage.

"Uh, babe, your dad's looking for you," The way that he pauses, as though carefully choosing his next words, has alerted me to the fact that there is a something else, a something else that he doesn't particularly want to tell me and so I stop what I am doing to focus my total attention on him. After a moment of consideration, he has apparently concluded that there is just no other way and decides to just blurt it out, "He wants to know when he can go home."

"He is home," I answer, stating the obvious.

"I know that," Michael replies, his tone now sounding a little annoyed at me for telling him something he so obviously knew, "but as I was coming through the living room, he stopped me to ask when he was going home. I told him that he was at home, and that this is his house, but he didn't believe me and started to ask where you were...." shrugging his shoulders slightly, as his voice trails off, he gives me the universally understood upward palms gesture, signaling that he doesn't know what else to say.

For a couple of minutes neither of says anything at all.

A much needed winter storm is pounding a seriously drought weary Southern California, the sound of the torrential rain hitting the roof of the garage echoes loudly in the in the silent space between us. Michael, looking as helpless as I often feel, waits for me to do or say something that will remove this weight from his shoulders. I begin to feel a bit sorry for him. My poor husband, he has sacrificed an awful lot so that I can be here, we both have, but this isn't his father, and truthfully, when he proposed to me all those years ago, neither of us knew that he was signing up for this.

For what isn't the first time, and most likely will not be the last, I count my blessings, and wonder secretly, if I would be as capable of showing such selflessness and compassion if our roles were reversed.

Slowly, I draw in one big breath, as I steel myself against whatever might come next and then I release it just as slowly. "Alright," I sigh, as my plans for the evening are evaporating into thin air, "I'll go talk to him."

I brush by Michael as I make my way out of the garage and he flashes me a small smile of what is either gratitude, or relief, but I am unsure of which.

My father, sitting in his recliner in the living room, exactly where I had left him just a short time before, doesn't acknowledge my presence as I re-enter the house. Thinking that he is engrossed in whatever he is watching on the television, I sit down in the overstuffed chair beside his, and wait for a commercial. When the commercial comes, and he still hasn't said anything, I say, in a voice that I hope sounds more carefree than I am currently feeling,

"Hey Daddy, what's going on?"

As my voice interrupts his private revere, he turns to face me. “I was just wondering," he says, "when I am going home?"

"Daddy, you are home." I reply, hating myself for sounding as if I am explaining some new concept to my three year old.

"You are at home, and this is your house." I repeat.

Trying to gauge the seriousness of this latest episode, I watch closely as my father attempts to match my words to his surroundings, and seeing for myself that he clearly does not recognize his home, I feel a familiar sad ache, as a new crack begins to spread across my heart. When he is sure that he has given my words, and his surroundings a fair evaluation, he smiles and turns his attention back to me. In a teasing tone, so familiar to my childhood memories, he says,

"I think you're trying to trick me."

Swallowing hard to push down the surge of emotion that is rising up inside of me, I silently remind myself to keep the focus on him.

"No Daddy, I would never try to trick you, you are at home, and this is your house."He thinks about this for a moment, and then challenges my answer,

"If this is my house, why are all these people in my space? Why are you here? "He smiles again, this time somewhat smugly, as though he thinks that he has bested me, and I will not be able to answer him.

"Daddy," I begin again to explain, "You are at home, and this is your house, but I live here with you, and so do your grandchildren, and so does Michael,"

"You live here...." he says in a quiet voice, that is more to himself than to me, and then, for a little while, as if he is mulling over this possibility, he is quiet again."Did you live here last year? He demands suddenly.

"Yes." I answer, the word barely escaping my lips, before he is firing questions at me in the rapid succession of a prosecuting attorney in the midst of grilling a hostile witness, "The year before that?" "Yes." I repeat. "How about the year before that?" "Yes." I reply again. “What about the year before that one?" "No, Daddy, the year before that, I was still living in San Diego." This change in my response causes him to cease with the interrogation tactics, and as he considers my reply, there is silence between us once more.

As that quiet deepens, I sit tense and rigid on the edge of the chair, attempting to appear as though I am waiting for him to speak, with a patience that I do not feel. I steal a glance at his face, and squash the urge to run my fingers through his snow white hair, in the same reassuring manner that I have often done with my children. A second glance and I see the thought process as it runs through him. Knowing how important it is for him, that I respect this, I fight off the temptation to jump in and supply the answers. As the silence lingers, I have abandoned the furtive glances that I had been casting in his direction, and I have begun to study the familiar lines and contours of his face, hoping for some sort of cue from him. (I have learned over time, that in these types of circumstances it is best to follow his lead.) With no cue forthcoming, I eventually drift off to my own thoughts,

Inside my head, my thoughts are not much more than a tangled mess of emotion, which I try, and then fail, to unknot. Caught like a fruit fly in my thought web, I lose track of time, and am brought back to the here and now, by the feeling of someone's eyes watching me. I turn and meet my father's familiar hazel eyes. Suddenly, it is 1981,and a fifteen year old me is in the familiar position of being trapped, like a deer in the headlights, in the patient, if not irritated, gaze of my father, who is waiting for my explanation of whatever it is that I have done this time, Realizing that this is the cue that I have been waiting for, I begin again.

"Daddy, this is your house, the house that you and mom bought in July of 1962. "Out there," I tell him, as I point like a tour guide toward the den, "is the fireplace that mom designed, and that the contractor couldn't get right until Jimmy Turner, who was just sixteen, brought his rock cutter over, and cut the bricks the right way. This is the house that I grew up in, and I live here, because you had a knee operation in 2008, and you couldn't get around very well, you needed someone here with you," I purposely gloss over the diagnosis of Alzheimer's related dementia, because I know that he will not believe it or me right now anyway, and continue to explain, "so Joey and Jordan and I moved back here to take care of you, and when Michael finished up his last tour, he came too. Jami was born in May of 2007, and now we all live here together, you, and me, and Michael, and the kids, and it is very crowded."

"If this is my house," he counters, "then where is my bedroom?" "Down the hall, last door on the right," I tell him.

He considers this for a second or two, and I think that I am finally getting through to him.

"What time is it?" he asks.

I look at the clock, "ten thirty-five," I answer.

"It's past my bedtime, no wonder I'm so tired." and as he has completely changed the subject, I start to believe that we've cleared tonight's hurdle.

"Do you want me to help you to your bedroom?" I offer.

His tone bristles, "You don't think that I can get there on my own?" I know that I have misstepped, he is on the offensive now, and I am treading on shaky ground. I look him straight in the eye, and choose my words carefully,

"Oh yes, Dad, I know that you can, but it isn't safe for you to walk without your cane," I remind him, "and you cannot carry your cane and your tea."

He grumbles like a stubborn child, who is half asleep but still insisting that they aren't tired, "I'm not ready yet." When he makes no further remark about his ability to make it to the bedroom on his own, I know that I have dodged a bullet, and I breathe a sigh of relief.

“I don't think I can get used to living here," he says.

"Daddy, you have lived her for nearly fifty years." I say, and so we begin all over again. I tell him the name of the street, I tell him who his neighbors are, I remind him of little things, like the time my sister put the neighbor boy in the dryer, and the big things, like the morning that the den he built, nearly burnt down, because a burning log rolled out of the fireplace and caught the carpet on fire. After about fifteen or twenty minutes of this, he decides that he doesn't care if this is his house or not, he is tired and he wants to go to bed. As I walk him down the hall, he still believes that I am trying to trick him. When we reach his room, I turn on the light, and turn down his bed. I am suddenly struck by the thought of how many times he has done this for me, and how many times I in turn have done this for my children. Taking one last shot at convincing him, I point out that both his dresser and his bed are in his room, so this must be his house.

"Well that's my dresser and my bed anyway." He agrees.

"It's okay Daddy," I tell him, "when you wake up in the morning, you will see that you are at home, and by noon tomorrow, I will have done something that you don't like, and all I will hear for the rest of the day is This is still my house young lady, and don't you forget it."

He smiles at me then, but I know that he still doesn't believe me. I can't really blame him, I am not sure if I believe me either.

"Good night Daddy, I love you." I say as he climbs into his bed. "I love you too." He replies, as I close his bedroom door.

Alone, I find that I am suddenly longing for my father to come and walk me back down the hall, to feel the soothing warmth of reassurance of his much larger hand curled around my tiny fingers, to have him chase away the monsters and the ghosts that are lurking in the shadows and make my world right again.

"There is irony in this," I am thinking, as I brush away the one or two pent up tears I have allowed to trail slowly down my cheek, and alone I begin back down a hallway that seems somehow longer than it had only moments before.

More by this Author


Comments 52 comments

Poohgranma profile image

Poohgranma 5 years ago from On the edge

A bittersweet tale of your devotion. I applaud you for caring for your Father and I know it isn't easy on any of the family. Please remember that caretakers need regular breaks and a support system of their own. Otherwise you won't be good for anything to anyone.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

Thank you Poohgranma, and I do try to remember...


ghomefitness profile image

ghomefitness 5 years ago from Chicago,IL

God bless you, we are going through this as well with my dad. He is still in the early stages but has Parkinson's as well. My mom is the primary care giver but it is getting a bit much. We will have to make some decisions soon to help her. My brother, sister and I all live close so we stop in a lot. I think we are soon going to have start scheduling visits to help.


stars439 profile image

stars439 5 years ago from Louisiana, The Magnolia and Pelican State.

Dear K Burns Darling : My heart goes out to you. My mother had Alzeimers. Just do the best you can, and allways remember the good things and the love. God Bless You.


b. Malin profile image

b. Malin 5 years ago

K. Burns Darling, so many of us can relate to what you are going through...My husband and I took care of his mother, for five years, until she passed, and all this is so familiar. I'm so glad you joined Hub Pages, it will help you, and your stories (rich and rewarding) will help others.

Thanks for becoming a follower of mine, after reading your profile and this Hub, I am becoming a follower of yours too!


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

b. Malin - Thank you for following me.

There are so many of us who are now under the umbrella of "Family Caretaker" and the numbers just keep rising. Bless you and your husband for taking care of your mother-in-law, it isn't an easy job, but I still believe that it is better for them if they can remain with family.


thisismylife9123 profile image

thisismylife9123 5 years ago from Salt lake city, UT

Dear K. burns,

My heart cries with you. I have an aunt has Down's syndrome and it's difficult. I understand your pain. God bless you and your loving heart.


The Minstrel profile image

The Minstrel 5 years ago from Hawaii

Thank you for your words. My father also has Alzheimers. It was healing to read your words.


North Wind profile image

North Wind 5 years ago from The World (for now)

I think this is a great idea to journal your time with your father from now on. It will help you a lot believe me.Try to take one moment at a time - it helps to prevent you from feeling overwhelmed. You are like his mother now and you will see sides of him he was afraid to show you before. Like you said - he was always the one to chase the monsters away - he hid the fact that he was afraid of them too.

Not many people are brave enough to face the stranger in front of them who used to be their parent. It is a far easier thing to release them to the care of others. I think that what you are doing for him is one of the greatest and bravest deeds on earth. You are actually becoming a mother to your father.It is not recognized as it but I know it to be true.


Loveslove profile image

Loveslove 5 years ago from England

Hi there...What a heartwrenching story, it made me cry,cry for you and your family ,for al the families who are going through a similar situation and for myself.

My mum is 91 and so far has been able to live alone in a sheltered complex with my brother close by.I visit often even though it means a four hour drive or a train journey.I notice changes in mum everytime I visit,she is in the very early stages of dementia and its distressing at times. My heart goes out to you X


DIYweddingplanner profile image

DIYweddingplanner 5 years ago from South Carolina, USA

Oh my goodness! I cried for both of us. I remember having those same conversations with my dad. Even as awful as that time was, I miss him every day.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

Loveslove - Thank you for your kind words and your well wishes. I am so sorry about your mum, it is a very difficult thing to watch our loved ones, especially our parents, as they go through this. I have learned in the past couple of years to not take my time with my father for granted... because I know that what time we have is precious and fleeting, I have found that I am a more attentive daughter, I listen better, I stop to sit with him when he wants to talk no matter how busy I am, and I no longer silently count the minutes that doing so is keeping me from doing something or other that I should be doing, I tell him every day how important he is to me, and how much I love him, because I know that one day he won't be able to understand what I am telling him. So in someways I think that there is a blessing that came along with the disease.

I wish happiness and time to you and your mum, make the best of the time you have with her, because it is something that you cannot ever get back..


Elearn4Life profile image

Elearn4Life 5 years ago

Very touching hub.You are now your heros shero.Blessings and peace to you and your family.I turned your comment on eldercare into a hub,hope you enjoy.

http://hubpages.com/health/How-To-Care-For-The-Eld...


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

Elearn4Life - Glad that I could help! Also glad that you stopped by, and that you enjoyed this piece. I am working on some future pieces about my dad, but am a little behind due to his recent stay in the hospital....


thebluestar profile image

thebluestar 5 years ago from Northern Ireland

Ahh dear sweet girl, it is a very sad fact that so many of us have just a little more than a brush with Alzheimer's disease. The most degrading and upsetting of all mental illness. You have a great selfless heart and a girl to be proud of. My father lived with me for the last 12 years of his life and I thank God that his memory was still in tact until the very end, although he had brief moment of wondering. I am a community carer and attend people every day whose life is overshadowed by this terrible affliction. It takes a special person to have the patience to cope with Alzheimers, and you will grow stronger for having to cope. Sending you hugs. x


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@bluestar - Thank you so much for your kind words and for the hugs, they are very much appreciated. Alzheimer's is the most awful and horrible disease, and I wouldn't wish it on my worst enemy, but you are right about the growing stronger part. In many ways I have gained much since my dad's diagnosis, and I am grateful for that. Thank you again for your kindness!


duffsmom profile image

duffsmom 5 years ago from Pacific Northwest, USA

Bravo!!! Unfortunately there are few who would give up so much to care for an ailing parent. I admire you. I lost my parents when I was a girl and so the cycle did not go full circle for me. I wonder how my children will deal. You are amazing--never forget that. Your father is a very lucky man, and raised a good woman. Now I have to go redo my mascara! :-)


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@duffsmom - Thank you for taking the time to read this, I am humbled by your kindness. People say that I am doing something extraordinary, but to me it is just the right thing to do, if I were to put him in someone else's care and anything were to happen to him, then I would never forgive myself. My mother passed away when I was 11 and my little sister was 9, the three of us were adrift with out her, and my dad was still young enough to have gone on and had another family. My grandparents offered to take us, but he dug in and without having a clue as to what he was doing, he commited himself to raising us. He always took care of me, and so, I will always, as long as I am able to, take care of him. Thank you again for your support, it is much appreciated.


epigramman profile image

epigramman 5 years ago

...well my mum and dad were my two best friends - now they are my cats (my only family) Little Miss Tiffy (the diva in the picture) and Mister Gabriel ......better to have loved than not loved at all they say .... but yes I took care of my mum in the last years of her life - there was a gap - my dad passed away in 1992 and my mum lived until 2004 - no regrets, I did my best - I think near the end my mum just wanted to let go - but instead of seeing her in a 'home' - we shared an apartment and she had a wonderful quality of life right until the end.

So naturally as you can imagine I relate to your story very well with love, respect and admiration for you and your family.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@epigramman - Thank you dear epi..Although this is harder than I ever imagined it would be, I have no regrets either. My dad has been my rock throughout my life, he was the one who sacrificed it all to raise my sister and I by himself after my mom passed, I will always take care of him, as long as there is breathe in my body and I am able. I am so glad for you that you got to spend that time with your mom...if there is one thing that I have learned it is that these moments are precious and few and that they can never be gotten back. Thank you as always for you support!


Amy Becherer profile image

Amy Becherer 5 years ago from St. Louis, MO

Your dad sounds like a rock even now. He still has the ability to speak well for himself even if he doesn't remember the details. My BFF is taking care of her mom now, who has a form of dementia. She has completely lucid times and other times my BFF, Laura, will tell me something that tells me her mother feels afraid. It must be terrifiying to have lived alone and then be surrounded by people you may or may not recognize. It's such an unfair disease, most certainly for the victim, but what agony for the family to watch. Although, K., you feel you are only doing what's right, you are a hero. Despite the love most feel for their parents, your's is a difficult path, full of unknowns and I am sure, would be no one's choice. Your courage, fortitude and love is a testiment to the fine father you now care for. Somehow, somewhere, sometime, he will know and be very proud of you. You are an angel.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

Amy - Yes, even though he is more dependent on me than I am on him these days, he is still my rock. We have been lucky thus far, the Aricept has made a huge difference and I am eternally grateful for that as it has given us extra time. Even as he receeds farther into the mists, he is still teaching me things everyday, I have learned to take things a little more slowly, that sometimes housework can be left for tomorrow because he feels like talking and it is more important for me to listen, than to make sure that the dishes are done. Every day that he wakes up and knows my name is a gift, and I 've learned to treat it as one. Thank you for reading this, your time is appreciated, as are your kind words, and thank you for the follow as well.


SusieQ42 5 years ago

Thank you. I've been in the caretaker position and it's not easy. Just keep praying! God bless.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@SusiwQ42 - You are welcome! No, it isn't easy, but it is the right thing for me and for my dad, and with God's help, and the wonderful support system I have in my family, we will get through it together. Thank your for the time you have spent reading my work and for the support and the follow, all of which are greatly appreciated!


Fay Paxton 5 years ago

I relate so completely to your beautiful story. I commend you for the care and devotion you gave you father. But please remember to take care of yourself. Bless you!

voted up/awesome and beautiful


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@Fay-Thank you Fay for your time in reading this hub,for your kind words, and for your concern, they are all greatly appreciated. I do try to remember to take time for me, but it isn't always easy!


resspenser profile image

resspenser 5 years ago from South Carolina

Magnificent! Voted up and awesome.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@resspenser - Thank you so much for the generosity of your time and for your kindness! They are so greatly appreciated!


nybride710 profile image

nybride710 5 years ago from Minnesota

I came to check out your Hubs after your comment on mine and discovered that your father and my stepfather died one day apart. My mom's husband of 26 years died on August 21, 2011. I enjoyed the wealth of information and insight you have.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@nybride710 - I am sorry for your loss, and I feel for you during this difficult time. It is such a hard path to go down, this reversal of roles, but in the end, the good out weight the bad, those extra moments that I knew then were so precious and few are worth more to me now than any physical object could ever be. Thank you for the generosity of your time,and for your comments, they are welcomed and deeply appreciated.

Kristen


Trinity M profile image

Trinity M 5 years ago

K. Burns Darling I commend you. What a touching and beautiful account of a very difficult time for you and your family. I’m looking after my 87 year old mother-in-law and my 78 year old father at the moment and I can understand how difficult and trying it can get at times. Stay strong and always remember what goes around comes around; you will be repaid in blessings many times over.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@Trinity M - Thank you for the generosity of your time and for your kind words they are both deeply appreciated. We unfortunately lost my father this past August, he was here in his home, surrounded by the love of his family, and when God called, he was ready to go, he was at peace, and he was smiling. Though our last journey together was a long and difficult one, I wouldn't change a moment of it, along with the bad, there also came the good,in the form of precious moments and treasured memories that otherwise would have never been. As you probably already know, being the care giver for a loved one is an incredibly difficult task, but it is worth every moment. Thanks again.

Kristen


gottaloveit profile image

gottaloveit 5 years ago from MD

You made me cry; your conversation with your dad about being home just happened in our own home this morning. Mom didn't know where she was and I assured her that she'd always be at home and with someone who loved her. Bless you for writing the way you do.


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California Author

@gottaloveit - I am sorry for making you cry, I just re-read this for the first time in awhile, and got pricked my heart on the memory, that was just a little less than a year ago, and we just lost my dad a little less than two months ago. One thing that I did find that helped when my dad became confused about where he was, was to have a single familiar landmark, for us, it was that fireplace. My mother designed that fireplace for a room addition that they added to the house in 1976, and I realized early on that even when he was confused about where he was, he recognized the fireplace, (one time getting very mad at me for "stealing" his fireplace and moving to my house), so when he would start to wonder about where he was, I would tell him, "Look out there Daddy, do you see the fireplace? Anytime you get confused about where you are, you look for the fireplace, and you will know that you are at home, and that I will always make sure that you are in your home." Maybe if you can determine a landmark that your mom will always recognize, she can use it as her landmark, to help with the anxiety? Thank you so much for the generosity of your time, and your gracious comments, they are both welcomed and appreciated.

Kristen


SirDent 4 years ago

This is all to familiar to me. My wife, son and I moved in with my mother in law after she became too ill to care for herself. It was back in 2008. She had Alzheimers and Parkinson Syndrome both. She eventually was bed-fast and that is where she passed away. I recall the many times she wanted to "GO HOME" and the times she did not recognize her own daughter.

You are a strong woman and your whole family is to be commended. May the Lord of Hosts bless and keep you.


K. Burns Darling profile image

K. Burns Darling 4 years ago from Orange County, California Author

@SirDent - In a lot of ways it was a win-win situation; My dad really hated being confined in a hospital, (following a minor surgery when I was a teenager, he once checked himself out, taking a cab home in his bathrobe), so he got to stay where he wanted to be, and my children, my husband and I were blessed with additional time with him that we otherwise would not have had. My dad passed away this past August, he was at home, surrounded by the love of the people he loved most, he was smiling, and he was at peace. The last leg of our journey together was a long and difficult one, but if I had to do it all over again, even knowing all that I know now, I wouldn't change it. Thank you so much for the generosity of your time, and for your comments, they are both welcomed and deeply appreciated.

Kristen


MobyWho profile image

MobyWho 4 years ago from Burlington VT

"I know that I have misstepped, he is on the offensive now, and I am treading on shaky ground." Your simple sentence has given me a degree of peace. Every so often I see an uncharacteristic rage erupt over nothing. My fist reaction was to withdraw and say nothing...for hours. Later, I reminded myself he is sick. That allowed me to calm down and accept "what is, is" - and has encouraged me to return to Al-Anon, a group that helped me through my first marriage to an alcoholic. Your Hub has given me hope! Many thanks.


K. Burns Darling profile image

K. Burns Darling 4 years ago from Orange County, California Author

@MobyWho - Thank you for the generosity of your time, your comments and your kindness, all are very welcome and deeply appreciated. It is so common with those patients who are suffering with dementia, either because they are not feeling well, or in many cases, as I suspect was the case with my Dad, they know that there is something amiss, but they are confused by their own confusion, and so it is a tremendously helpful to remind oneself that it is the disease and not our loved one who is at fault. Thanks again,

Kristen


Alta5656 profile image

Alta5656 4 years ago from Davao City, Philippines

I can very much relate with your hub.. My mother, too, has dementia. Once she asked me and my sis-n-law, "Do you happen to know the name of my boyfriend?" Of course she's referring to my father whom she bore 8 children with. And when we asked her in return, "How many children do you have?" She replied: "Heaven forbids! I don't have children!" Well.. don't you think she's cute? Kidding aside, voted your hub up.


K. Burns Darling profile image

K. Burns Darling 4 years ago from Orange County, California Author

@Alta5656 - We had many of those moments with my dad; he once couldn't remember my mother's name, but was sure that he must have dated her at one time....at the same time he knew that I was his daughter, and he knew my mother's father's name when we showed him a picture of he and my mother with my mother's parents..... Thank you so much for the gift of your time, and for your comments, they are both welcomed and deeply appreciated.

Kristen


Cshasong 4 years ago

I must have been supposed to find your hub. Here is another common link. I have been caring for my mom in my home for the last 16 mo. You describe a scene similar to what we go through each day. Mom is so fiercely independent, yet can't remember who the man in the picture is. My dad, her husband of 55 years. Sometimes she's funny, sometimes she's mean. Your story gives me strength because I don't have little ones to care for at the same time. Kudos to you for all you did for your father.


K. Burns Darling profile image

K. Burns Darling 4 years ago from Orange County, California Author

@Cshasong - Taking care of my dad was difficult, but at the same time it was a privilege and an honor, and there were many moments that would have been otherwise missed had we not been here with him, moments that are now the precious memories that he left behind. I know that taking care of an aging parent, especially one who is suffering from Alzheimer's disease or from dementia can at the least be incredibly trying, but I also know the priceless rewards that come in the little moments that make it all worthwhile. Be patient, Breathe deeply, and hang in there, it is truly worth it.

Kristen


Eiddwen profile image

Eiddwen 4 years ago from Wales

A heart rending share which will help many on their way ;It is hard to share at times but you have and this alone says so much about you.

Take care my friend and enjoy your day.

Eddy.


Eiddwen profile image

Eiddwen 4 years ago from Wales

A heart rending share which will help many on their way ;It is hard to share at times but you have and this alone says so much about you.

Take care my friend and enjoy your day.

Eddy.


K. Burns Darling profile image

K. Burns Darling 4 years ago from Orange County, California Author

@Eiddwen - Thank you Eddy, as always for the gift of your time and for your generous comments, they are always welcomed and so very appreciated. It was most definitely a difficult chapter of my life to share, but also a healing experience.

Thank You Again,

Kristen


onni18 4 years ago

Kristen, I went through a similar situation with my dad who passed in January. I took care of him for over a year while he had lung cancer and dementia....it was the most difficult thing I've ever had to do....and though my husband was supportive, I had no other family around during the experience. It was me and 4 other CNAs that took care of my dad in his home until he passed.....my question for you is (if you don't mind me asking), how did you rebuild your life after? I had to quit my job to care for my dad, and to some degree I feel even more isolated than I did then....how did you just "pick up" and return to normal? I don't remember how to just return to the life I had before his illness.....I got into nursing school this year, but I decided to forgo it because honestly, I think revisiting that level of direct patient care would just be far too painful for me....like you, I'm grateful for the rare precious moments I had with my father, but I feel as though I lost so much of my own life and sense of feeling young and optimistic....I'm only 35 but I feel like that year of caring for my dad sent me straight to my 50's! Do you have any advice for me? How did you re-enter the world after having been removed for it for so long? Thankyou for anything you are willing to share....


K. Burns Darling profile image

K. Burns Darling 4 years ago from Orange County, California Author

@onni18 - I wish that I had an answer for you, but I don't really. I also quit my job, and through out the five years that I was his primary caregiver, I lost touch with many of my friends and more distant family members. The things that I built my life on prior to my dad's illness, most of which revolved around the activities of my children, (team sports, programs, PTA and volunteer work, also took a back seat to the care of my father and my new baby. I wish that I could say that I have been able to "pick-up" and return to normal, but the truth of the matter is that since my father's passing a little over a year ago, I have been struggling with a crushing bout of depression that has only been intensified by my fight to re-connect with a life and a world that I don't feel connect to. Daddy's illness and his care were very difficult, and in many ways I feel as you said, "aged" beyond my years, but for me, it isn't necessarily a physical thing, but a mental or emotional one. I just see everything so differntly than I used to. Still, it is starting to improve, and especially lately, I am beginning to have days where I feel almost normal again. I guess that the best advice I can give you is to be patient with yourself, and be kind to yourself, remember that you are still grieving for the loss of your father, and that in and of itself is a process that will only get better with time.

Thank you for the gift of your time, and for your comments here, they are both welcomed and deeply appreciated.

Kristen


dementiacaregiver profile image

dementiacaregiver 3 years ago

Wow! I'm not what you call an emotional person, but the way you touched me with this article is amazing. I too left my home to care for my dad, with Alzheimer's. I have so much respect for you and your family.


Nell Rose profile image

Nell Rose 2 years ago from England

This was so touching, and brought tears to my eyes. You explained it wonderfully, and with so much feeling. I do understand what you are going through, my mum didn't have Alzheimers but she had a benign brain tumor that steadily grew bigger and made her totally forgetful. It was awful trying to see into her eyes and recognise the mum I always had, its so sad to see those memories disappear, nell


K. Burns Darling profile image

K. Burns Darling 2 years ago from Orange County, California Author

It was a very difficult and trying time, and Alzheimer's or any other disease that robs one of their memory and personality is the absolute worst of all diseases. Thank you so much for your kind words and thoughts, they are deeply appreciated.


liesl5858 profile image

liesl5858 16 months ago from United Kingdom

Hi! K. Burns Darling, I applaud you for taking care of your Dad who had Alzheimers Disease. I have looked after and I am still looking after elderly people with Alzheimers or Dementia and it is not an easy task. It is more mental than physical and it really drains you mentally and even physically. Sometimes it is difficult to get into their world or the real world. But you have done your best for your Dad and that is what matters. God bless you and your family. At least you did not put your father in a care home or nursing home. I am not saying that rest homes or nursing homes are not good but it is rewarding though hard to look after your own parents. I am sure your father had a very good care from you and your family. Well done.


GoldenRod LM profile image

GoldenRod LM 16 months ago from Superior, Arizona USA

I experienced the shrugging shoulders when you tell dad, "You are home." That is when you know something is very wrong, and it strikes at your heart like nothing else. They shrug their shoulders at other obvious things, and you know that memory is going. When he says, "Where's Poopsy?" That was his endearing name for his wife, and you say, "She died 13 years ago." "Oh," he says, and shrugs his shoulders. He protected you and cared for you for many years. Now it is time to step up. Same body, different mind. It happens. Thanks for the hub.

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