Five weeks after Dad died, Mom moved to New Mexico to be near me. Through serendipity and the kindness of a stranger, we were able to find her a patio home just four blocks from our house. I'm grateful for how things have worked out, because while Mom lives 'independently,' the truth is she needs help with everything but her activities of daily living. From bill paying to house cleaning, I'll be doing it -- so it's nice that I can simply walk over to her place to help out.
The big questions now are: Where do we go from here? And what have I learned from my experience with Dad?
I'll take the latter question first.
If I had it all to do over again with Dad, would I do it? Yes. But I have to admit I would think much longer and much more seriously about ever moving a parent into my home in the future. If I had lived my whole life in close proximity to my parents and, hence, had a very close, personal relationship with them, maybe I would feel differently. As it was, I found it very stressful to give up my privacy by having another person – even my own parent – living in my home.
I also grossly underestimated the time investment in caring for someone at home. It truly requires every minute of every day. Well-meaning friends encouraged Lee and me to be sure to "make time for yourselves," but the reality is much different. Dad was always aware enough to realize when he was being babysat, and that caused hurt feelings and acrimony. The path of least resistance (i.e.: simply staying home most of the time) proved easier on everyone. But for a couple used to jaunting off frequently for 3-day weekends, being housebound felt mentally claustrophobic to Lee and me.
On the plus side, I learned there's nothing like sharing your home with a parent to add indescribable depth to your relationship. I discovered things about Dad that I never knew before – tidbits from his childhood that had never previously surfaced. I learned the name of the cafe my grandparents owned when Dad was a teenager. I heard stories about why Dad's uncle was disowned by his family in Norway, and how Dad was nearly killed in a car accident as a teenager. When Dad came to live with Lee and me, my sister told me, "You'll get the best part of Dad," and she was right.
I also discovered my beloved husband possesses depths of character I never suspected. Despite asking that he never be required to provide personal care to Dad in his final days, when the need arose, Lee was there – willingly, lovingly, and uncomplainingly. I love him more than ever before. An experience that could have wrenched us apart instead pulled us tight.
And as to the other question: Where do we go from here?
My sister, who lives about an hour away from where Mom used to live, recently told me, "It all seems so strange now. The house is sold, Mom's not here anymore, and Dad's gone. It's a lot of loss in a very short period of time."
She's right. And, for me, another loss is this blog. After all, it's titled "Dad has Dementia: Elizabeth's Home-Care Journal." And now, Dad is gone, and I'm no longer doing home care. So, the blog must end.
I want to thank everyone for reading and commenting over these past 36 weeks. Sharing your stories has buoyed me in ways you'll never know. I'll miss sharing my thoughts and feelings with you on a weekly basis.
But don't count me out yet. You may well find me back here on Caring.com in the future – whether blogging or doing something else. So let's not say 'goodbye' yet. Let's just say 'see you later.'
It's really touching on a personal level. I was so touched reading about her nice husband and also finding out things about Dad. I think my dad has dementia and I want to be there for him.
Elizabeth, Where to start? I found your blog by typing into google something like when do I move my dad from another state into my home. I don't recall exactly what I typed. What I will remember is reading all of your blogs. I laughed, I cried, and I worried a little more. But forever and always I will remember your words. You have helped me in ways I can never explain. I still don't know when the time will be right but what I know is that when the time comes, I have knowledge of what it's like from a real person that was courageous enough to share her feelings. God bless you and thank you from the very bottom of my heart.
Our story is very similar to yours with the exception of two very elderly parents ill at the same time, ages 93 and 94. Dad entered a facility two years ago as Mom could no longer physically care for him. She was determined to stay in their home regardless of her frailty. Her mind was terrific. She needed reassurance constantly without being aware of it. Dad adjusted remarkably well to the Home. However handling Dr. appts. or hospitalizations for both of them was mind boggling. Our one sister had the brunt of it, while my sister and I filled in as often as we could, say every other month or so, traveling from one state to their home. We were fortunate that two of them were in the Health System and were aware of all that is involved. There are 4 remaining siblings, help was minimal. Their care placed tremendous strain and demands on us. We lost Mom this past July. Because of her determination to be up, out and about, she suffered a fall which brought about the end. As I wrote to my youngest sister, as difficult as all of this caregiving was, she had the gave the gift of making Mom and Dad's later years feeling loved and cared for.. I would write the same to you. You did not turn away, but faced each day the best you could. I often said our story would have made a great sitcom.
All the best to Elizabeth and Lee. Caregivers realize that they are not alone in their care-giving role and circumstance when they followed Elizabeth's weekly blog. Elizabeth's blog resonates with caregivers who have, / or are walking the same line described in her detailed account of the highs and lows, joys and sorrows, gains and loss, of being a caregiver for her father during his dementia, and later her mother. So often we feel isolated in our despair, exhaustion, frustration, and loss. It is such a helpless feeling not to be able to curb the pain of our ailing loved ones, or to make their last months both soothing and comforting. Thank you for sharing your very personal experience in relatively unvarnished words. How fortunate for your parents to have such a wonderful daughter. Elizabeth, you have been blessed with an amazing husband. Both you and Lee are angels.
Elizabeth, I was just rereading some of your blog and thought of something. How about coming back and letting us know how the last year has been. What has happened with your mom, how are you and Lee coping with the freer time? You could call is Dad HAD dementia, now Mom is Living Here... or something along those lines. We really would like to hear from you.
I am so greatful that I happened upon this blog. I am basically in the same position as you were. It helps to know that it's possible to get thru this without having a nervous breakdown. I don't mind the cares but I am having a hard time with the aggression. However....if you made it thru....I can too. I will just have to toughen up and realize "this too will pass".
While little can be done to improve dementia in those who suffer, family members who find emotional distress in the hardship of Alzheimer Disease can call for therapy to find better methods of coping.
I lost my mom to cancer almost 2 months ago. This is not the same as dementia and, while she had trouble communicating at the end, her mind was very much there. Some things are different but some things very much the same as I had an afternoon of melancholy contemplation today. I expected more of hospice (they resorted quickly to agitation and increased drugs when she wanted to get up when the truth, we later discovered, was the tumor in her caused her pain and she was more comfortable in a different possition). Thank God we knew her well enough to discover than but I wish we had figured it out sooner. It was very comforting to hear someone else's comments on what grief looks like. I had no idea she had cancer when she moved into my home but I am grateful and hold dear to the depth of our relationship that grew. Her dog has now become a member of my pack. The birdfeeder outside her window is empty because the chirping annoyed her. The coral bells she bought on our trip to her favorite greenhouse last spring came back this year. Most mornings, I still open the door to her bedroom and open the blinds for her. Most nights, I close those blinds, read a chapter in her Bible and any notes she had on that passage and I close her bedroom door. The stories aren't exactly the same but, enough similarity that it has given be comfort nearly a year later.
It is so hard, I know, I am caring for my elderly Dad too, who has mid stage dementia/alzheimer's. We are lucky enough to have him atn home with us, and the thing I initially found hardest was not knowing what to expect, what was going to happen next, and a friend of my husbnads put me onto a wonderful resource, a free bonus ebook all about dealing with Alzheimers, and Dr Lmont who wrote it give loads of practical advice on how to keep Dads mind as sharp as possible as long as possible. It was really easy to read and understand too, and has given us a huge insight into how things are going to progress. <a href="http://brainandmemoryfoundation.org/">Seven Second Memory ebook</a>
Thank you for sharing your time with your Dad. I am going thru it with my Mom now, our stories are so much alike.
LauraL, thank you for responding to Sunnieyes. You should be able to reach me at eshean@caring.com. If that doesn't work, let me know. My thoughts are with you and all caregivers.
Sunnieyes, here you go: http://www.caring.com/blogs/dad-has-dementia/2010
I couldn't reach you by the email provided. I just found your blog on "Dad has dementia". I would like to read from the start. Is it possible to find it. I'm hoping to find them for my boy friend who takes care of his mom the last 9 years, he is 48 right now is about to go crazy. He wants to get a big house so we can all live together and I would live almost free by helping him watch his mom 3 - 4 days a week. I work pt as a school teacher the rest of the week. We would also have a caretaker come in for when we both want to get away. She has cancer but getting around very well, takes her own baths etc. Any advice would really help. I just hope I will be doing the right. Just a little background is we have been seeing each other for 3 years now, never fight. I'm 18 years older then him. When we met it was instant attraction. Oh by the way I look and act like I'm 20 years younger. Thank you for listening, My best to you, Barbara Gene Seattle Wa.
I stumbled across your blog while researching dementia symptoms and just spent a couple hours reading through all your posts. I moved my father in with me 2 years ago, and have been blogging myself about the experience for the last year (http://midlifemidcape.wordpress.com). I feel like I've just read the last two years of my life story in time-lapse format - the experience and emotions seem just that similar. Thanks for sharing, and I hope you and your husband have time to enjoy your lives together again.
Thank you, @JerryH. Nothing means more to me than the support of my siblings!
Beth- Thanks so much for doing this blog. It was great reading it if only because there was so much there I had forgotten. Everything was such a blur those last few weeks and months. You have no idea how often I wished that I could have done more to help you, but distance can be a curse and a blessing. I do miss the old guy, it seems so strange that he is gone. The only other thing that I want to say to you concerning both the blog and the way you have dealt with Mom & Dad is: Sis, you done good! Hope to see you soon.
Congratulations, Elizabeth, on the nomination for online journalism award for this blog. I knew that when I read the blog each week that I was reading the work of a fine writer. I certainly hope that you win the award.You have my respect and admiration.
Elizabeth Many good wishes to you. I have identified with you in so many ways and your candid thoughts and comments have helped me tremendously. My father, who lives with me for over two years now, continues in his decline. But knowing him better and being his friend and companion has been so special to me. It is very difficult at times as you know. I will miss you so very much.
Thank you all so much for sharing your kind words and support. I wish you all the best. I think you'll be hearing from me on Caring.com soon. Maybe a new blog for the new year? Meanwhile, know that I will keep each of you in my thoughts as you carry on with your caregiving duties day after day. I'm sending love and positive energy into the universe for you all.
Hi Elizabeth, I too have read all of your blogs, I do not think I left any comment before, However, Now I must say we all will miss you if you do not blog. I wish to suggest that you prepare a garden over at your Mother's new home area if you can. It would provide a small bit of continuity, seeing as your Dad loved to garden. Being in New Mexico the weather will work better for the tomatos and all else that he liked to nourish. You and your Mom will continue to reap the benfits of having a garden tending it and eating from it. And it will nourish you. Perhaps if you do not use Caring.com, how about we all find you on Face Book, it would be good for you to keep the hundreds of friends you have made along the way , who care and pray for you and your family, and Lee, included.
Thank you, Elizabeth. Sharing your journey with us was personal and priceless. I too am sad that your blog is ending but see that it is time for you to move on. Perhaps we will hear from you in the future. In the mean time God Bless.
Thank you for allowing us to accompany you on this long and difficult journey. Your insights into your parents' behavior has helped me so much in dealing with my own parents. I hope now you get some of your life with your husband back, and it becomes easier to deal with your mother. ((Hugs)) and best wishes!
Thank you for sharing your journey Elizabeth. If you are up to it, please consider blogging on other subjects; your Mother, or anything else you feel like. You have wonderful insight and you are a talented writer. Please keep us posted on any future blogs--any subject, I want to read them!
I too will be facing this battle. While I care for patients daily, caring for someone in my home will be different and more challenging to say the least. This 35 week odyssey was just the ticket to shore up my confidence and dig my big girl panties out for the adventure ahead. Thank you.
Elizabeth -- I just spent the last two hours reading your entire blog. It is wonderful and brought tears to my eyes. My mother has Alzheimer's and her spouse (not my dad) and my sister put her in a home as soon as they could so he could play and forget about her. Ironically Mom has blossomed and thrived. I find it amazing I found your blog on your last week. Nevertheless, I am so glad I found it. Your parents are/were blessed to have you has their daughter. I am sure your father is thinking that while he is smiling down at you at this moment. Take care.
Elizabeth, where in Northern New Mexico are you? I'm in Santa Fe.
Thank you Elizabeth...but don't end your blog, I would like to hear how your dealings with Mom are...I have a similar situation with my Mom and your insights are so helpful. Best of all to both of you. DV
Elizabeth, thank you so much for sharing a piece of yourself with us on your journey. It has helped me tremendously in my journey with my mom and dad. We just got Mom out of the hospital after yet another stroke and Dad is the Ruler of Egypt (King of Denial). Mom got out last Friday and the very next day he wanted to take her to family reunion.He just does not understand that she does not need to be dragged all over the place. She does like daycare and they said they would try to take her back next week but she does best in her own home. I will certainly miss your blogs but I want you to take time for yourself and also enjoy that wonderful man of yours. As someone else posted - he is definitely a keeper - and men like him are so rare these days. Love your mom and know that "this, too, shall pass." God bless you and yours.
Elizabeth, I'll miss your blog every week. I always looked forward to reading the next week. Take care of yourself - don't forget to do that. It is so important. We've gone as long as we can and are finally getting a break next month. Can't wait! Best of luck to you.
Thanks so much for sharing. Wish you all the best. Have fun and have Jesus.
I will miss reading your blog, Elizabeth. Over these last several months I have seen so much of my own situation and feelings in your words. My 84-year-old mother with Alzheimer's has lived with me for the past 4-1/2 years, and I do tell my peers to think LONG and HARD before ever living with a parent at this stage. It's so much more stress and heartache than I ever anticipated. And I know so well the claustrophic feeling of not being able to dash away for a weekend...... God Bless and thank you for all of your sharing.
Elizabeth, I will echo what others here have said, "Thank you, for sharing your experience with caring for your dad with us." Reading your journal/blog and reader's comments has helped me in so many ways as I travel on this journey of caring for a parent with AD. I cried buckets when your dad became so ill and at his passing. I am so sorry for your loss. I really wish you well now that your mother is so close. It sounds like you will have your hands full with her as well. My mother, with the help of Namenda and Exelon, is able to live alone for awhile longer. She lives only 3 blocks away, which is very convenient. But I spend a large part of each day with her. Sometimes I wish she would agree to move in with my husband and me. At least then I would only have one household to maintain. But other times I realize that having her here would be an even greater strain. Life throws us a curve ball sometimes and we grow as we bend to handle it. I looked forward to your weekly posts and will miss them.I will think of you often and keep you, Lee and your family in my prayers. God bless.
Hi, Elizabeth, Thanks for sharing your thought and feelings. It has been helpful to me in dark moments of caring for my spouse with Alzheimer's. See you later.
Thank you Elizabeth for sharing your life with us over the past weeks dealing with your Dad. Your sharing has helped me deal with my Dad who has things going on inside his body which is 'magnifying' his character defects. You wrote in your blog about your Dad's sudden decline which I am experiencing. I lived with my Dad for 9 months to help out as my stepmother is in the latter stages of Alzheimers and it was a disaster. Dad wants my stepmother to be where she was 15 years ago which isn't possible. Dad fell a few weeks ago and now has to use a walker. Dad also had pneumonia which wasn't discovered until I asked for a chest xray when they dealt with his hip. Life sure has a way of changing a person's life drastically in a very short time. Take care and all the best in dealing with your Mom.
Dear Elizabeth: A friend recently sent me a link to your blog, and I want to let you know that I think it’s wonderful. I too am writing a blog about my father, who also suffered from dementia (Alzheimer’s), and who also passed away recently. Despite some basic differences in our situations (most significantly, my father never did come to live with me – he lived at a wonderful nursing home for the last five years of his life), I am astounded by some of the similarities in our stories. For example: • I loved your post on the funny side of things. Despite the sadness of the disease, we too had amusing stories about my dad. The episode with his soup really was very funny. • Your posts about your father’s confusion over his home oxygen and his pills reminded me of my father’s difficulty in taking his pills, and the complicated procedure I devised to make sure he took them regularly. • You described the sudden decline of your father’s health in your post called “Suddenly, Dad is Dying”. I too described my father’s two sudden declines, each of while left him considerably more disabled in a very short period of time, and which I compared to “falling off a cliff.” • I too love chocolate, baseball, and Cary Grant movies :) I must tell you that your post on “What Does Grief Look Like?” brought me to tears. It was beautiful and unbearably moving. And I absolutely understand your relief that he’s gone, and the guilt of feeling that way. Unlike you, I didn’t start writing my blog until four months after my father passed away. Each post tells a bit of the story of the last five and a half years of his life, with occasional jumps to and from the present day, and I’m still in the process of finishing the story. I would understand if you don’t want to open old wounds, but if you’re interested, here’s the link: http://alzheimerhighway.blogspot.com/ My condolences on the loss of your father, and best wishes Gilda in Toronto
Elizabeth, My prayer for you towards the end of your father's life and your mother's move nearby was that you'd soon have some time to rest, reflect and heal. I believe that prayer has been answered. I was glad that in this article you shared your hindsight about whether you'd bring your dad to live with you and Lee if you had it to do over again. One of the things I've wondered is whether I could manage dad living with me if mom dies first and dad's mind deteriorates to the point where he can not live alone. I would want to do what is best for my dad. He has always put mine and my sisters' needs before his own. He is the most generous person...one of 2 people in my life that I've always been able to depend on if an emergency rose and I needed someone. But as a single working person, it would be challenging even though he has the financial means to employ someone to assist us with his care while I am at work. His mother had alzheimers and he brought her to live with him and mom the last 3 years of her life. It was a huge strain on him. Elizabeth, I will truly miss your blogs! When I read yesterday that you would not be blogging anymore, I felt sad. But you are right, you dad has passed now and you're at a different place in your life now. Thank you so very much for sharing your's and Lee's experience taking care of your dad. We have benefited so much. I'm glad you are Lee are closer as a result. Sometimes stress like the both of you have experienced pulls people apart. Lee is definitely a keeper; you're a lucky lady in that regard! Best wishes to you both! Cathy
Hi Elizabeth ~ Thank you for sharing your journey with your Dad. My condolences to you. Good luck with your Mom. I live next door to my Mom, so it's a little closer proximity than you to yours, though I also have a sister here to share the duties. At 67 I have many friends and acquaintances who are taking care of elders, particularly their 90+ Moms. Makes me think twice about how I will fare should I live so long. And how as a single, childless elder I will get my needs met if/when as my mother likes to say about her mind, " It has run off without me." Your blog has helped me process my own caretaking crucible and has also provided the comfort of shared human experience. Thank you so much.