“I love her so much. I am overwhelmed I just love her so much.” -Dad
Home. And feeling exactly this way. My love for them is crashing through me. The tide in my chest, like I swallowed the ocean. I walked in the door 2 nights ago, reunited with them after 10 days away, and took in the sight of my father in his chair. “Hi Dad!” I cried. “Hello,” he answered, detached. Knowing enough to hide what he didn’t. Me.
Nephew, sister, hugs, welcomes. Finally I made my way to his side, reaching out my hand gingerly to caress his forehead. He was distant at first, room temperature. Like a bath you ran to warm a chill but then left to sit. Had I ceased to feel familiar to him? Were 10 days away too many? I loaded him with kisses before making my way toward Momma. She was seated in the kitchen and leaning drowsily against the table in the afterglow of supper. At the sight of her face I couldn’t hold back. I fell to my knees, threw my arms around her, and pressed my own face against her belly heaving sobs into her softness.
Mommy, Daddy. I have been drowning in sand. ~ On the opposite end of this immense hourglass, smothered by respite. ~ Your days numbered in grains, and falling over me.
#iamacaregiver #endalz #alzheimersawareness #alzheimers#myfamilymyheart #home #respite #paradox
Crossposted from Instagram
Thank you. Thank you for writing this blog. Thank you for finding a way to explaim how we feel, the good, the bad, the hopelessness, the heart-shattering honesty. You’re an exquisite writer.
I have just stumbled across Your site, skimmed only a hand full of your Journals, I too walk a similar road, my mother has Dementia/Alzheimer’s. I cared for her for a hand full of years, however she is now in a Care facility, something I carry a huge amount of guilt over.
I can’t even bring myself to talk to her about why she is there, she asks why she is there some times and when she is coming home, not often mind you but enough. Mum had a hip replacement after a fall, so i keep asking how her hip is, and talking about the nurses, each time i mention it its like a news flash… It is the saddest thing, beyond sad, a place that only those that live it understand, to have someone slowly die, to lose those precious memories, to see the blank stare, the once animated face now blank, devoid of expression and emotion.
The nurses have come in many times and i have been on my knees my head in my mother’s lap, her hands on my head as my body shook with uncontrollable sobs.
I grieve a mother who is still with me but also in many respects gone. Slowly the functions we take for granted are suffocated, unable to walk, unable to speak, unable to swallow.. The only small comfort I take is that mum does not know she has been there 12 months.
The other day when visiting, i could see she did not know who i was, so i asked – mum who am i? The look in her eyes crippled me, i could see her searching for who i was, my name, then she said simply, her eyes warm, a softness to her lips as she said, “You are mine”. If she never remembers my name, i pray that she will recall that I am hers. It is enough. The reality is cruel that even that will be forgotten.
It is devastatingly painful journey, one that only unconditional love can endure.
Just beautiful…I’m crying because Mother was just like that with me…I miss her so
Wow, I finally found someone going through something similar. My husband and I have been caring for my early onset Alzheimer’s mom for 9 years ever since her diagnosis when I was 33 and she was 62. I work full time and take the evening, night, and weekend shifts. My husband and a paid caregiver only recently hired take all other shifts. She is end stage for about two years, is bedbound, but is still in good spirits and smiles a lot. This journey has been the hardest, longest, most sleep deprived journey I’ve ever encountered, with no end in sight. I would do it again for my mom. Nursing homes were not happening on my watch.
I am crying as I read this-I have so lived what you are going through, & what I continue to live through though Mother passed away Christmas 2014…you write so beautifully of how I feel! Thank you…
Elizabeth Grace Wolf, you wonderful, loving, amazing daughter, you.
Understandably, the pain you are experiencing is piercing your heart so deeply that it bleeds profusely. I can feel that pain through your words. You are eloquent and truthful… and only the person living this wretched nightmare could know what it feels like to be held in the claws of a devil, yet emit such compassion for your momma and poppa.
I admire you beyond infinity. Please know that if were close by I would be there daily to support you with scheduled breaks… sending you daily hugs and endless love.
I just lost my Mom to a stroke after thanksgiving. She lived with my husband and I for 8 years. I am an only child. My Mom didn’t have Alz, (her sister did – I am an ALZ board member), but the last two years she was incapacitated after a fall. We did everything for her. I was up all night every two hours, ran a business, and took care of two homes. you have said each and every emotion I have felt. How many nights did I want to leave and not go back? Caregiving is the hardest job. I refused the nursing home option, although many days I questioned myself not thinking I could go on another day. ALZ Delaware Valley is in Marlton. Stay Strong.
We are all living longer, the best care we can get is in our own homes by people who truly would give their lives for us as you are and My husband and I did. It’s been two months and I am still exhausted and sleep about 10 hours a night. My physical body is recovering.
I thank you for taking the time to share your experiences. I’ve saved this to my Favorites as I know I will seek you out again in times of need. The tears I’m experiencing now are from relief that I’ve found somewhere I can go to keep my own thoughts and doubts in check. I know I’m not alone despite the times that feel like I am. The sacrifices are many but I fully intend to keep the promise I made to my father and my family to take care of my mother. Thank you again and God bless you and your family.
I am blessed to have found you. Your story is compelling! I will be trying to catch up on it. I just want to tell you. I feel as though I am standing in the room with you as I read. I am loving on your dad in his confusion, I am sitting on the other side of your Mom as you hold her while she cries for hers. I am trying to hold you up when you feel weak. Thank you for letting us in! Remember you are you and you are amazing!!!!
Elizabeth, I read your NYTimes article. Painfully lovely. Would love to talk with you. We share an experience. Both of my parents were diagnosed on the same day. I wrote Alzheimer’s Daughter to share our journey.
Blessings to you as you journey with your mom and dad.
I too have been there, am here. Precious mom, who was a loving, uneducated Saint, who gave up most of her life caring for others and suffering pain. 7 years I cared for her. From the time she sundowner so insistently that she would pack her bag all day and then sit in the kitchen by the door waiting for the ride who was coming to take her home (5 states away & 40 years ago) where her long dead mother waited to feed her supper, thru 2 broken hips, surgeries, rehab, nursing home stays (where I stood with her 24/7 because they would have killed her), and then the bedridden years where she slowly became more rigid until she could not move herself at all at the end. She died at 85 was Nov, but I feel her here still out of the corners of my eyes. 8 Years now caring for my dad 92 too who is now bedridden also, but never was a nice man in life. The rest of the family could care less about when or how he dies because he was such a selfish brute to them. I had no choice in caring for both my parents. It was put upon my by the others, but I will live thru this. My dad threatened, struck out, and fought over power in the early days because that is all he ever knew to do. Being financially dependent on them due to another calamity I suffered made it very difficult for me at first to exert authority over them. But, I saw the writing on the wall early and made sure that I transformed their house into an environment that would help me care for them as early as possible. I put up yard fences to prevent the wandering, a front ramp and side steps before they were needed, locks on doors that led to harm, locks on the stove and refrigerator dangers. I modified the shower, got them each their own hospital beds and separated them so they did not harm each other even inadvertantly. Wheelchairs, strollers, treadmill, exercise equipment, special full length bed pads, bad monitors, wall assist bars throughout the house. All these made it possible for me to care for them single handedly without losing my sanity and still getting some sleep. Plan ahead because it only gets worse with more hear ache and exhaustion ahead as you watch them get sucked down and smothered by this disease. I can only say you are more fortunate to tackle it in the strength of your 30’s rather than the exhaustion of your 50’s as I did. Even though you still feel like the child yourself and mourn being thrust into a parent less role without their support and ability to see you as an adult, you will get thru it relatively intact without having to abandon you own future and work as older individuals often have to in order to do this. I too never had kids, but yes, you now have two of them, and you lose the ability to relate to the normal, superficial lives of everyone else around you, so reach out to a support group if you can. Good luck on your journey.
I read your NYT article and I want you to know you are not alone. I am dealing with the same issue and at times I was overwhelmed to a pretty serious point. I now have a live in couple and things are better. Everyday I worry about how long the money will last to pay for them. But I feel I am doing my best and I’m sure your are too. You are a wonderful daughter!
I just read the NYT article and looked up your blog. My dad, 96, has had dementia probably since before we knew. We were able to keep him in his little apartment until about 18 months ago. He doesn’t know where he is, doesn’t know how to use the phone, doesn’t seem to miss us but seems somewhat happy to see us. He doesn’t seem to know our names anymore. He is in a wheelchair, totally incontinent has to be lifted with a hydraulic lift. I had promised myself I would never let him go to an institution. Now I live with some guilt, some resignation, worry, sadness, grief. i do not know where he is and cannot reach him except to hand a cookie. thank you for your beautiful gripping blog.
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Your devotion to your parents is truly beyond words. I took care of my mother who had Alzheimer’s for five years. She was in a facility nearby so my care taking is not to be compared to your efforts. However I did learn something I would like to share with anyone who will be under taking the role of care taker. It is very important to examine any documents one’s parents may have drawn up concerning their health care. This is especially important if there are siblings involved. No matter who takes on the role of care taker be sure you fully understand who has the power to make decisions concerning care. I was forced to leave my mother in a city alone because my sister would not allow me to move her to my new location. Sad but true.
Dear Elizabeth, I came across your blog through the New York Times article. My sister, my 91-year-old father and I have been taking care of my 87-year-old mother at home since her Alzheimer’s diagnosis six years ago. I am amazed that you have the energy to write this blog and I want to thank you for it. Knowing that others are dealing with similar experiences and feelings is an immense help to us and gives us the strength to carry on. Thank you again and I wish the best for you and your family.
The best to you and your family too Leila – my heart goes out to all of you. I don’t post on this blog too often because I’m spent most of the time, but once in a while an experience with my parents overwhelms me with feeling and it helps to bring it to word and share it. Thank you so much for reaching out to make a connection. Love <3