Mark Tucker : Journal

Trying to be good sons (but not having a clue how)

Posted in Family by marktucker on July 16, 2012

My mother in her bedroom today. I finally got her blinds opened up; she’s insistent now on keeping them closed. She was never that way when she was younger; she always had the windows thrown open.

I’m going to try to keep this story short, (because the internet only allows short attention spans). But the multiple dimensions of this story are rich with texture. But I’ll keep it brief, and continue the explanations into the photo captions.

Our mother is aging. She is now 82. Almost deaf. And now with early dementia, she also is smoking like a fiend. I have no idea how smoking and dementia are connected, but they seem to be. My brother Robert and I are rallying together to support my mother, as she wishes to continue to live at home. She’s always been “an outside person, with her flowers”, so the thought of assisted living is the last possible bad option. She needs almost daily help now. We can’t get her in the shower; she won’t cook a solid healthy meal; we’ve taken her car keys away; she’s basically turned into a Country Western song — drinking coffee, and smoking cigarettes, (and watching The Weather Channel).

A few weeks ago we finally arranged a suitable caregiver to come to her home four days per week. We tried a few individuals, but they all flaked out, so we ended up with a company that sends caregivers out. Of course we were nervous about who would actually show up. As it turns out, we were blessed with an angel.

Rose is her caregiver now three of the four days per week. She is incredible. She is a trained teacher for developmentally challenged children, with a Masters Degree, and my fear is that we’ll lose her when the school year begins. But for now, we have her and we aren’t letting go. The other day, Rose showed up with corn from the garden, and various vegetables and chicken, and she cooked my mother a birthday lunch. As we sat around the table eating, I began to compare notes with Rose — as it turns out, she is the little sister of Paul Cole, who was my friend at T.C. Cherry Elementary School, in the mid sixties. Paul was also friends with Vince Rowe, who I have not talked to in years. Vince and I were the fastest runners in our grade — we’d run from the left field foul pole to the right field pole, and always be neck and neck.

Rose told me a story of even remembering that her kindergarten class, at her church, was segregated. This must have been about 1966 or so. Amazing to think about — our generation being segregated. Rose and Paul lived on Smallhouse Road; there were nine in her family. Paul graduated and went to the Navy, and is retired, living in Hawaii. I saw him a few years ago at our reunion.

Small world…

So anyway, today Rose and my mother and I cleaned out her kitchen cabinets, moved things to the garage, watered the plants, and fetched the mail. My brother is great too, always comes by to check on her often. He’s great with keeping the house running smoothly; he completely fixed her broken air conditioner last week, almost effortlessly.

I wish there was an Instruction Manual on how to properly support a parent, when these decisions need to be made. My brother and I just text back and forth, trying to figure it out, a day at a time, doing the best we can.

We never got her in the shower today; that is a major production now. She’s terrified of falling down in the shower. Even after I installed those handicapped handles in the shower, and installed a chair for her to sit in. That’s Rose in the background, providing further moral support.

Here she is, a little brighter, after washing her face and brushing her teeth, and getting ready to head to the grocery store.

Rose, by the sliding glass door, in the living room. Pretty light on her face.

We have a little ritual now of having lunch together. I get them carry-out from the deli at the grocery store. Chicken or fish. And today, cherry cobbler. (I’ve been on a juice fast, so nothing for me).

My mother has a missing tooth somewhere. If she’s going out on the town, she puts in the tooth. Here, she shows me where it goes.

Standing over her, making damn sure she brushes her teeth. She will try to wiggle out of everything now; she wants to go back to the Barcalounger and drink more coffee.

Lunchtime! Trying to tempt me to break my juice fast.

The dreaded Mr. Coffee machine. It’s on 24-7. Never turned off. She must be buzzing like a bee. Can’t get her to stop.

I’m going to be nice, and hold my tongue, about the tobacco companies, but let’s just say they’ve had her by the neck since college. And somehow, the dementia has accelerated the habit.

She would love it if Rose and I did the work, and she kept watching The Weather Channel, but we give her small tasks around the house too.

Family snapshots in the living room.

I love this photo of her, shot when she was a teenager. She was the tomboy of the family. Always in trouble. Great face.

A funny illustration of my brother Robert and me. I think done at DisneyWorld or some theme park, by one of those caricature artists. Love the frame too.

This is her perch, in the afternoons, as she’s out watering the flowers. Front porch. Like Mrs Kravitts on “Bewitched”, always watching the activity of her neighborhood.

And this is the image that always puts a lump in my throat — we have this ritual, that, as I’m pulling away and heading back to Nashville, she always stands there and waves at me until I’m down the street. This is my keeper image of the day. This is always the time when I think to myself, as I’m pulling away: “Will this be the last time I see her standing on the porch, waving goodbye to me…?” This is when the real fear kicks in.

61 Responses

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  1. Joanna pittwood said, on July 16, 2012 at 6:50 pm

    I forget how much I love your blog. I haven’t been on here in so long!

    For some reason this post got me all emotional, possibly because I am a woman-lol, but also because I just finished work experience at a dementia unit as I am training to become a nurse. I know how difficult it is to find caregivers who are worthy of looking after a parent or grandparent and by the looks you truly have been blessed, rose seems like such a loving lady. Thank you for the glimps into your life, sometimes I really need to step back and realize that I’m not the only one out here!

    Yor blog is inspirational, love your photography so much!!!

    All the way from New Zealand!
    Joanna

  2. Michael Regnier said, on July 16, 2012 at 8:15 pm

    This is the first time that I have ever commented on someone’s blog, but this post hit so close to home. First off, I love you photography. I am also a photographer, working in advertising and fine art. My mother is 84 and going down hill fast. She also is going deaf, and starting to go blind. She has the onsets of dementia and her body is starting to fail and 3 months ago I decided she needed to move in with me and my family. Every day we go thru the same things that you are mentioning in your post, so I can relate to what you are going thru. I’m cooking breakfast, lunch and dinner for her and the funny coincidence is that I to am also on a juice fast and she is always trying to get me to eat her food as well.

    All the best to you and your mom.
    Michael Regnier

  3. chris said, on July 16, 2012 at 9:34 pm

    simply wonderful.

  4. Paul Hood said, on July 17, 2012 at 12:45 am

    Going through a very similar scenario. We moved next door to be at hand and I spend about an hour a day helping out. Same symptoms: closed blinds, avoiding personal tasks or any kind of exercise, constant TV, coffee, poor dietary habits. In a young person it would raise warning flags about serious depression, but his mood seems fine– just no motivation to do anything and doesn’t seem to care about consequences and nobody can seem to change that. I enjoy spending time with him but I try to keep good boundaries on my time, or he might be inclined to take all of it. It’s a trade-off. I know if I was in the reversed position I’d want my kids to care enough to be around at least some of the time, but it can be very hard when you have a career and possibly a family of your own. Your caregiver sounds like a real Angel. I’m sure you’ll do whatever you can to hold on to her. I know my dad doesn’t want to be a burden to me, but like anybody he needs some love and attention. There are times when I wish he had a wife, or more friends or family around but it is what it is. Thankfully I have some support of my own ( my partner ) or it would be harder. Take care and hang in there, and try to stay on the bright side getting to spend time with them before they’re gone.

  5. jmeyersforeman said, on July 17, 2012 at 8:24 am

    Your story and your photos are beautifully warm and touching, full of emotion that a lot of us can identify with. As our parents age, we each in our own way work through the situation, as best we can. you show us that it can be done with compasion and dignity. I was drawn to your blog as a photographer, I realize it is the stories we tell with and in our photos that are important.

  6. Leslie Riley said, on July 17, 2012 at 10:50 am

    What a wonderful tribute to your beloved mother! I can relate as I lost my mother in 2003, and my grandmother, who reared me, in 2001. My mother lived her life in a nursing home for thirty years, beginning when she was merely 37. She had been diagnosed with undifferentiated schizophrenia; nowadays, there is speculation that she suffered from bipolar with schiz-affect. In contrast, my grandmother worked at the bakery and drove her car through her 87th year. She lived in her house on Scottsville Road from 1950-1996. She started having strokes, so she moved into an apartment in Christian Care Homes on Westen Avenue which has assisted living. After a major stroke in 2001, she was moved to the nursing home wing of Christian Care where she lived for about six months until she passed away. My great-grandmother, who helped rear me and who passed away in 1971 to the date of my grandmother’s passing, stayed in a nursing home for about six months, before my grandparents moved her back to our home where she has a full-time sitter until she died. You are blessed to be able to keep your mother in her home, and your sitter sounds like an angel. It is heartbreaking to see our loved ones age. as I said, I have dealt with this with my entire life with my own mother. She was in the mental hospital all through my childhood. I will pray that your mother can stay in her own home for as long as possible. My great-grandmother was injured during her nursing home stay; my grandmother found her with black eyes and tied to a chair. My mother had questionable care at times as well. My grandmother lay in her apartment on the kitchen floor until my uncle found her, and he questioned the staff why they had not answered her calls for help, for their was a help cord that she had pulled to alert them that she had fallen. Then, she had jewelry and silver stolen from her apartment after she had been moved to the nursing home wing; the thief or someone had left religious pamphlets all over her apartment. People even stole clothes from her room in the nursing home wing. A sitter who worked there told me that there were many thefts at Christian Care Homes. A friend of mine hired someone from out of state to watch over her father’s care while he was in a nursing home to make sure that he got proper care. Your precious mother and your family will be in my prayers as you make important decisions about your mother. God bless her angelic sitter; she is truly a gift from God!

  7. Jennifer Kley said, on July 17, 2012 at 5:29 pm

    Wow, wow, wow.
    Where do I start, Mark?
    I’ve been reading your blog for a long time now and this is one of those posts that just gets me in the head and the heart.
    I remember your Mother from the “okra” (?) videos. LOVED THAT. (I even encouraged a friend of mine to get her own aging mother on film making a (famously delicious) family meal because of your Mom’s touching video.)
    I also remember reading here on your blog about your Mom giving the neighborhood girl a cookie every day or so.
    So to see this turn of events…I feel for you in Washington, D.C. Just want you to know that.
    The part you wrote about the “ritual” of her waving you off from the front of the house is exactly what I went through before my father died. He would stand in the doorway and wave and wave until he couldn’t see me anymore down the street. I would toot the horn and he’d wave harder, smiling. I would think the same thing: “Will this be the last time I see him?” (It was, once. But at least I saw him standing in front of his own home that he loved–gardens and fruit trees included over the years–smiling and waving and sending me off safely with his good thoughts and well wishes.

    Man.

    Your post hit me today.

    Thank you for the beauty of your photos coupled with your stories.

  8. nashville care manager said, on July 18, 2012 at 8:58 am

    You really captured the day to day life of your mother in a beautiful way.

  9. [...] how to care for aging parents while keeping your sanity « The JOurney by Mary Oliver Jul 18 [...]

  10. karen geroni said, on July 19, 2012 at 10:58 am

    Hi love your blog….I am a personal support worker who works on the dementia floor…very rewarding but demanding job…but would not give it up for anything…hope she can stay in the home for as long as possible..and I give praise to your family..

  11. Stephanie said, on July 19, 2012 at 11:01 am

    Thanks for sharing. My Mum is in the later stages and I miss her so much. Dad passed away at 66 with early onset. I consider myself blessed to have such amazing parents.

  12. D. said, on July 19, 2012 at 11:02 am

    Thank you so much for your post! My Dad has Alzheimer’s and he is in a home. I just wanted to commend you for keeping up with your mom. I have 3 brothers, and some days it feels like they don’t care. One brother hasn’t seen Dad in Months. And he lives a block from the home. I find it harder dealing with the lack of empathy from the brothers then taking care of our father. So, as a daughter, mother and hopefully eventually a grand mother, and quite possibly a future Alzheimer patient, I want to thank you for caring for your mother. And for keeping in contact with your brother regarding her and her health!.

  13. judy stewart said, on July 19, 2012 at 11:02 am

    Thank-you,my mom had this dreadful disese and we lost her 5 yrs ago,this brought back so many memories for me,all I can say is keep loving your mom.

  14. Karen said, on July 19, 2012 at 11:07 am

    I lost my mom to AD and now my older brother that is like a father to me is struggling with it.Thanks for the encouraging post.

  15. Michele Hanna said, on July 19, 2012 at 11:12 am

    What a beautiful story. Your Mother is so lucky to have you and your Brother. I worked in an independant Retirement community, and we had alot of residents there whom had ahlzheimers or dimetia, and some who’s family just paid the bills and went on with their own lives. God Bless you two or three with Rose. I love elderley people and to sit and visit with them and hear their stories is so interesting. Even those with memory problems can usually remember something about the past that was so special to them. My Father passed away in Nov. 2011 and strokes caused some of his memory problems. Hang in their, the Lord has blessings for children like you, I truely believe this.

  16. Ashley said, on July 19, 2012 at 11:13 am

    This was absolutely beautiful. I recently lost my grandmother to this dreadful disease, after years of helping my parents care for her. Your pictures and writing really resonated with me and reminded me of the conflicting emotions each day brought. I wish you and your family the best of luck and am sending hope and love your way. I know the decisions you are having to make are difficult and it’s hard to not second-guess yourself, but it sounds like you are being a wonderful son and doing a great job for your mother. It reflects on how well she must have raised you and your brother for you two to be such devoted, loving sons in her time of need.

  17. Angie Creson said, on July 19, 2012 at 11:23 am

    This has really hit close to home. Your last picture made me cry. I lost may grandma 12/5/2009 and my grandpa 6/28/2012. I loved them dearly they were more then just grandparents to my sisters and I. When we would arrive my grandma would cry. When we left her and grandpa would stand at the drive. Grandma holding a tissue and crying. My grandpa holding her and both waving good bye. I miss them sooo much. My grandpa almost made it to his 90th birthday. really long story but short of it he passed out and broke his femur. It required surgery. Everything went fine. They were preparing to send him home. 2 hours I receive a phone call he was gone. One good thing is we saw him 5 days prior to his passing. Grandma I was there with her. I think it is wonderful what you and your brother is doing and having a great caregiver is even better. Love the pictures also I am just taking up photography. So I am draw to pictures now lol. My God be with you all.

  18. Gail Ann Nuno said, on July 19, 2012 at 11:23 am

    I am now dealing with my mother and have Dementia and struggling doing it alone as my sibblings choose to ignore my plea for help.

  19. Donna Rowland said, on July 19, 2012 at 11:32 am

    Mark, your blog has touched me so much. Your mother is so lucky to have your and brother. I lost my mother to pneumonia and before any signs of dementia. I am 66 and unfortunately I believe I am displaying some early signs. I will follow your journey and learn from you, your mom and the excellent care-giver with a great smile. Bless you!

  20. Kim said, on July 19, 2012 at 11:33 am

    What a wonderful son!!!!! I don’t know what the hell I’m doing n i know I’m doing everything wrong lol.. I have two brothers that keep there distance…

  21. Valentina said, on July 19, 2012 at 11:33 am

    Your story really hit close to home. My grandmother Betty has Alzhemier’s and it is so hard to see her diminish. She loved her yard and garden butnow she doesnt even go outside. She hardly remembers me. She looks at me with blank eyes until I make her laugh. She is in a childlike stage now and loves to play. It is very hard to give her a shower also and she cries when the water hits her body. I have to do something funny like stick my head in or pretends she wets me. Then she laughs. The caregivers are ok.. But only does the minimum . There are days I go over there and both grandparents smell like urine. We been through so many caregivers. Its exhausting. We had a really great gal one time. But she ended up pregnant and had to leave us.. I miss her. She was awsome to my grandparents. Ask Rose if they can clone her and send her to Colorado!! J/k. Well best of luck to you and thank you for sharing your story.

  22. Judy Maxim said, on July 19, 2012 at 11:34 am

    thank you for sharing your journey Mark. prayers for you all as you continue on…
    never knowing exactly what the next turn will bring…

    may God send you blessings along the way

    Judy

  23. r moore said, on July 19, 2012 at 11:38 am

    you are doing it “right”, i promise….i have been a dementia care nurse is Assisted Living for many years, my last stint was in a locked alzheimers unit…my own sweet mother passed away last Valentines day after a few years of various situations including staying with me, my sis, in three different assited livings..if i had it to do again, i would have never moved her out of her home…your photos of your mother are like looking at my own life a few years ago…my mom would stand on her little porch waving me down the street…her pack of smokes and coffee cup were the two constants in her life before she was forced to move away from the house and plants she loved. Keep her at home for as long as you can..as a person who has worked in facilities, they are lacking in trained, compassionate one on one care…all of them…no matter how well staffed you think they are, when the day crew goes home and visitors are all gone, residents are low on the priority list with some of the “care givers” these places hire..i know….i had to supervise staff that i would have never trusted to care for my own parent..and more training is useless …you can not teach a person to have compassion…they either do or they dont…at least in a home setting you can be fully aware of what is going on 24/7 with your mother…i left my last job after continual reporting to my director …reports to her of staff who were disrespectful to residents, they would not fire the staff or reprimand them out of fear of law suits…me, an old-school type of nurse, must have not understood the new corporate politically correct policy of keeping people on the pay roll out of fear of law suits…for sure…there are many, many loving and kind people who work in facilities, ..but it only takes one cold hearted person to make a dementia patient fearful. i have seen this and it is heart-wrenching. keep your sweet mother at home…and install nanny cams if you can…God Bless.

  24. jean brown said, on July 19, 2012 at 11:40 am

    i was so glad you posted this it is beautifull my mother has the samething i had to put my mother in a place where she could get the help she needs an my family does not help me with her i feel guilt all the time she is taken care of so gld i am not alone your mother is beautifull

  25. Linda said, on July 19, 2012 at 11:41 am

    Thanks for sharing, I lost my mom almost 4 years ago, its so hard to sit and watch them go from us, I kept her at home with me for the last 2 1/2 years she lived, it was like loosing her daily, sometimes my daughter would tell me “mama” banny is not home, she would look at us and seems like she was looking t hru us, but I would not take anything for being able to care for her until the end. And the bath thing, I think goes with all dementia patients, don’t like water.
    Thanks again for sharing brought back so many good memories of my mom.

  26. Marlene said, on July 19, 2012 at 11:42 am

    Wow, your Mom is blessed to have 2 sons who care so much about her. You are not doing a good job, you are both doing a great job! I am walking this journey with my Mom now, we had to put her in care a few years ago (she is 92 now), and I am her family caregiver. Probably one of the toughest assignments in life is watching an aging parent failing. Many wonderful funny moments, but many very difficult trying times too. Like an emotional roller coaster. Stay strong and loving, so many people age with no one to care for them, no family to visit or help, alone and lonely. Bless you for what you are doing. You are doing it right. Thank you for sharing.

  27. pldamg said, on July 19, 2012 at 11:45 am

    My mom had AD too. Horrible disease. She hated to bath too. We remembered that as a young girl she would have her hair washed in the kitchen sink. So she would let us wash her hair that way. As for bathing if we got a bath once a week we were glad. I removed the toilet paper in her room and put in flushable wipes that way her butt was cleaned! She would wash her face when she got ready for bed that was also a childhood routine. We realized that she didn’t need a bath everyday she really wasn’t doing much! So if we got her butt clean and her face washed we were ahead of the curve!

    When we did want to bath her we told her it was Sat night and it was bath night! It worked sometimes!

    Good luck and remember to take care of yourself!!

  28. Bobbie said, on July 19, 2012 at 11:53 am

    In the end all she knows is that she is being cared for with love.It sounds as if you are doing your best.There is no play book or way to predict how things will go for your family.My prayer for you is that your family gets through this whole. Certainly one of the hardest things you will EVER do but experience tells me you would gladly do it all over again.

  29. carter75 said, on July 19, 2012 at 11:57 am

    Such a touching story! I have been a caregiver for 19 years now and its a blessing to see that Rose is now part of your family, your very lucky to have such a special person! I have had many patients through the years (but my most special one is my grandmother whom im currently caring for .( My parents moved in with her so that she could continue to be at home)i have always tried to put understand what my other families was dealing with but till now i have never truly understood! Prayer are with your family and may yall continue to be blessed with a wonderful caregiver to help yall through the months and years to come!!

  30. Shannon Crawford said, on July 19, 2012 at 12:03 pm

    You ARE being good sons. Don’t ever doubt it! No one is equipped to handle this disease and yet millions do it everyday to care for the people they love. Bravo for what you and your brother are doing. My grandma, my “mom” passed from AD and watching her suffer was unbearable for me, and lets just say that I didn’t handle it as I wish now I would have . After we lost her, I started working with AD patients myself to try and help other families get through it and I just wanted to let you that the bathing seems to affect most all the patients I’ve seen, and my grandma. I read a journal once that said these patients have a marked fear of water, probably from lack of understanding it. The suggestions of baby wipes and things work wonders. Keep your head up and now that she sees what you are doing for her, even if she can’t express it. God Bless!!

  31. Liz said, on July 19, 2012 at 12:05 pm

    You and your brother are working together to keep your Mom in her familiar place and I hope you can continue this as “The Long Goodbye” plays out. Keep up the good work!

  32. big sis said, on July 19, 2012 at 12:26 pm

    My siblings & I are at that stage now. Mom fell in March & fractured her hip….hospital for a month then home where my sister lives with her. My sister took off some time from work to care for her & I went back for 2 weeks….I live in Philly, mom lives in Pittsburgh. When my sister returned to work, she made mom lunch & put it in the fridge. For whatever reason, mom didn’t eat lunch, lost weight, became weak & lighted headed. Wound up back in the hospital, then onto a rehabilatation center (very nice too). Now the insurance says she’s run out of coverage, the doctor feels she’s not well enough to leave. My sister lost her job (after 29 years), no health insurance, no Rx coverage. They were discussing assisted living, not sure if they meant long term or short term, but if it’s for good, the house will have to be sold, my sister wil have no place to live, no job, only severance & unemployment….neither good enough to survive. Both myself (retired) my older brother, on partial social security or my youngest brother, 3 children, are not financially able to do too much. I’m beside myself with worry for mom & my sister. This is the time I wish I was richer & living closer (moving back is not an option). I just hope that God steps in & helps out. I’ve suggested meals on wheels, but for whatever reason, my sister has let it go in one ear & right the other.Eventually she’ll have to find a job, then what. Maybe I’ll suggest her finding someone like Rose…..maybe she’ll listen to me then

  33. Karen said, on July 19, 2012 at 12:27 pm

    God bless the both of you boys and Rose. My mother passed away at 61 of Altzeimers! (I was only 24). She had it for about 4 years and they were hard ones. Luckily after 2 years she forgot she smoked (after smoking since about 10) but had other issues. She also would not take a shower and when you mentioned it she would get upset! But I wish Ihad been older and had more resources to help deal with it and that is my one regret. (it has been 21 years since she is gone). It was hardest once she forgot who I was. Its a hard and sad disease and my greatest fear is getting as it runs in the family. (her father, and older sister had it). We hope deep down they are still there and know we love them!

  34. diane bush said, on July 19, 2012 at 12:31 pm

    Excellent material..I volunteer in a alzthemers home Finding the disease extremely interesting and find myself drawn to learn about the disease. I love to hear different aproaches on how you deal with different situations..also would love to learn the early signs of alzthemers, latley I learned the sence of smell leaves the person early in the disease. The smoking mentioned. .. is interesting Does the person increase smoking, or start up when never smoked before? The water is interesting too..has your loved one always not liked water, could they swim in earlier times..like was the water fear always there? thanks for this keep in touch I d love to learn all I can..fill me in on early signs, and helpful hints.. hugs to all!

  35. Susan said, on July 19, 2012 at 1:00 pm

    My Mom has Alzheimer’s and I know it is very hard to watch her window to the world get smaller and smaller. As time goes on they seem to get mentally younger and younger. I to have a very hard time getting my mom onthe bathtub. I find it helps to not ask my mom but tell her it is time for her bath and as she is saying no I just gently ask her if she wants help with her buttons etc and it distracts her enough that she moves forward. I talk to her about what she wants to do when she is done and before she knows it she is done! I don’t know how well it will work down the road though. Each day presents new challenges . God be with you and anyone that is caring for someone with any type of Dimentia. Being there for our loved ones in there world is all we can do. I do volunteer work with Hospice and I really believe that family being there makes all the difference in the world. There may come a time when you and I will need the help outside the home. When and if that time comes don’t feel guilty, we all need some help sooner or later.

  36. Mari Burgess said, on July 19, 2012 at 1:25 pm

    I jest tea your blog, how precious and sad. I just lost my Daddy 1 week ago. We went through alot of the similar issues with h. Not the weather channel, but his “Jesus” tape. He smoked 3-4 packs a day until 2 weeks before he passed and then wr told h he didnt smoke… Luckily, he said “oh, that’s right”. Dementia is an evil disease and hard to deal with. You are doing all the right things….. You are wonderful sons! God bless you on this hard journey….

  37. Bakhus Saba said, on July 19, 2012 at 1:44 pm

    My name is Bakhus Saba, I placed my Mother in a retirement home with Alzheimer’s. I had been taking care of her for the past 7 yrs, she has been with me all my 52 yrs. The song Still A Child was written about what a caregiver is going through when placing a loved one in full care. John and Michele Law (The Laws) wrote the music and that’s John singing in the video.

    Here’s the link to the video Still a Child

    If you can post it on your site, facebook, Twitter or share your friends it would be great
    It can be purchased on cd baby http://cdbaby.com/cd/johnlaw2

    I want to bring an awareness to care giving especially for Alzheimer patients and the growing need to address this huge problem that our health care system will be under in the future WE NEED TO DO SOMETHING ABOUT IT NOW. Thank you

    Sincerely
    Bakhus Saba Email bakhus.saba@century21.ca

    Still a Child-written by John Law, Michele Law and Bakhus Saba (Socan)

    If you knew what I was going through,
    You’d approve of what I had to do.
    Putting you away for the rest of your days,
    Plays on my heart and it tears me apart

    I walk away with you on my mind,
    It’s killing me to leave you behind.
    You’re begging me to take you home,
    But I feel so guilty because I leave alone.
    Chorus
    Cause I’m still a child when I look in your eyes.
    And it make me cry and it make me cry
    Now every hello feels like I’m saying goodbye
    Goodbye good bye good bye

    If I could have you back for one more day.
    Would you reassure me what I’m doing is okay
    Would you comfort me and ease my mind,
    Cause only you can help me find my way

  38. Darilee Van Pelt said, on July 19, 2012 at 3:02 pm

    I can relate to your “keeper memories”.

  39. Carolyn said, on July 19, 2012 at 3:38 pm

    “Still a Child” is a very moving song. Thank you for posting that and the tremendous blog with photos. I have just returned home from visiting my mom (89 with AD) in the nursing home. Mom doesn’t recognize any family members or acknowledge relationships, but we are thankful that she is still her happy, sweet self. She has recently stopped feeding herself and has just been placed in a wheelchair. This disese is dreadful for all involved. Prayers for all out there who struggle with guilt and decisions regarding care of their loved ones.

  40. Valerie Overstreet said, on July 19, 2012 at 3:45 pm

    I know your fear, but I can tell you from experience that you and your brother are doing a great job. Your mom is smiling, active and happy! You can’t ask for more than that. Just live it day to day because we can’t know what the next day will bring. I found that out with my mother. Cherish what you have now. Mother went through what your mother is now doing and now mother can’t walk and needs total and complete care 24/7, but we have kept her at home and she is not unhappy. She talks sometimes, but doesn’t make sense, but we are enjoying her even in this stage. What else can you do? Just hang in there and know you are doing a great job and more than most sons would do. KUDOS TO YOU AND YOUR BROTHER! Valerie

  41. I assume the young girl in the group of coloured photos might be a grand daughter she is so much like the young photo of your Mum Keep up the good work and hang on to Rosie. They say the worst thing is for a parent to out live the child but I would have to say the when the parent becomes the child and the roles are reversed is is also the hardest thing I have ever done

  42. carter75 said, on July 19, 2012 at 5:35 pm

    Who sings the song..i would love to hear it!

  43. Judith Unsworth said, on July 19, 2012 at 8:01 pm

    Thank you so much for sharing, it is sad to read all the comments, but also a comfort to know that it is not a struggle for just one. Kuddo’s to you and your brother, your Mom looks happy and content, enjoy your visits with her at home and continue to photograph the good times. Please continue to share, and know that your sorrow, your fear and your compassion for your mom is welcomed and needed by all who read your story.

  44. Liz worth said, on July 19, 2012 at 9:46 pm

    God bless you. If she is happy and safe then all is well. My dad has Lewy body dementia and my parents moved in with us last year. The Alzheimer’s assoc has a terrific website. Get your mom a medical alert safe return bracelet to wear….if she wanders off, all of her information is immediately available to whomever finds her. Enjoy the good times when they happen. It is a sad and beautiful path you travel.

  45. Janet Hawn said, on July 19, 2012 at 11:03 pm

    My sister has early onset dementia. Age 56 when diagnosed. I am sick about it. It seems like there is no manual of instruction- I’m winging it after talking to drs., long-term care facilities, and the Area Council on Aging. I will just have to learn to care for her as each day passes- Each day is different- she still has a lot of good days- I keep hoping the diagnosis is wrong, but the difficulties seem to be progressing. I have to take breaks from it- just so overwhelming to realize something she doesn’t.

  46. linda said, on July 19, 2012 at 11:18 pm

    I loved your pictures and story. I live with mom since my husband died. She is 88 and has alzheimers. I am the full time caregiver and believe me, lf you can find a person like Rose you should try to keep her. A caregiver has to have the patience of Job.

  47. Ginger said, on July 20, 2012 at 12:15 am

    It’s a long road ahead, but your very lucky you and her brother take care of your mom. My brother isn’t much help at all. My mom has a neighbor that helps with her during the day, and she is wonderful. She is 86, and my mom is 85. My mom fell 3 yrs ago and fractured her hip and slowly the dementia came on. I live 75 miles from her, so it’s hard for me to see her often. I pray that Chris, our caregiver will be able to care for mom as it worsens. I’m blessed to have Chris for now. Loved your photos of your mom. My mom cries every time I get ready to leave to go home, so hard for me and I also wonder to how long will I have her with me. She was so independent up til she was 81. I worry at night for her because she doesn’t have Chris stay at night.
    Good luck to you. We are all in this together.

  48. josephine maccuish said, on July 20, 2012 at 12:16 am

    God Bless your soul,I guess all the love and care for your dear mother today,is the love and care that she have been given you and you should be proud of yourself.Not easy,to take care of a person with sickness like that,but your caregiver is an Angel!nice photo i love it! Lucky you, you still have your mother I lost mine 2 yrs ago and she was 92, and I miss her a lot but she know I love her,coz keep telling her that. Your mother is a lucky one……to raise a son like you,,,and your brother.

  49. Michaeline Parrish said, on July 20, 2012 at 1:49 pm

    I so relate to your thoughts on the last picture. I recently spent two weeks with my parents in Alabama. (I live in North Carolina.) As I walked out the door the morning I flew home, it hit me like a bullet: this could very well be the last time I see one or both of my parents. As I sat in the airport I simply could not hold back the tears. So blessed to still have both of my parents but as each month goes by, dementia and other health issues take them a little bit closer to away.

  50. Anamaria R. Meeker said, on July 20, 2012 at 11:20 pm

    I have never replied to a blog before either, but as some of these other folks have shared, I am very familiar with the effects and difficulties associated with caring for someone with Dementia and/or Alzheimer’s. I work in an assisted living and memory care community, and part of my job is helping families with the transition from home to a Memory Care environment. It is a very stressful time for everyone, especially the loved ones having to make these decisions. I would encourage you and your brother to seek out a local Alzheimer’s or Dementia support group, because they can be helpful in many ways. I have also written a collection of poetry related to this subject, and would love to send you a copy. People have told me they find it comforting and feel better knowing they are not alone in this type of journey with their loved ones. You can send me a private message on my facebook page if you are interested. My hope and prayer for you and your brother is to take it one day at a time, and thank God for your wonderful caregiver. God Bless.

  51. David said, on July 22, 2012 at 9:10 am

    Hi Mark,

    My dad suffered from Dementia and passed away in 2009. Keeping a blog helped keep me sane. I’m sending my best to you, your mom, and your whole family.

  52. Peggy said, on July 25, 2012 at 4:44 am

    It is very hard when you love so much, it hurts so much to see this wonderful lady, your mom, go through this ugly disease. She deserves so much better. Continue to be patient with her, and gentle. She still knows when someone is genuine, they can sense this. Many of us baby boomers are going through the same thing and I hope you and your brother continue to share your ups and downs on this site. All the best to the three of you.

  53. Angela Talley said, on July 25, 2012 at 8:03 am

    This is what photography is about… these
    are so touching and yes.. Most of us can or
    will relate….

  54. Todd Thiele said, on July 30, 2012 at 9:37 am

    Beautiful, Mark. You’re lucky the tobacco didn’t kill her years ago. It took my father’s life much to early. Just a reminder for all of us to photograph our parents. I often find excuses not to. It pisses me off.

  55. Bonnie Martin said, on August 9, 2012 at 9:06 pm

    I too can relate to all of this. My mom has alzheimers and is still living alone, 5 minutes from me but I work fulltime and still go to her house every night after work. I have to because of meds and I water her flowers and pay her bills and all of that good stuff. Mom still functions in her own home but her short termed memory is pretty much shot. It is getting to the point that I am going to have to look at options. Mom had to quit driving almost 2 years ago and really should have given it up before then but after getting lost on the road and having mulitple wrecks in a short period of time it had to happen. I heard on tv the other day that alzheimers is the 6th leading cause of death and I was like WOW. This isn’t an easy journey for anyone and it is so hard on family. I just am taking one day at a time and am doing the best that I can do at this time. I am looking at maybe having someone come into her home while I am at work or do adult daycare. It can weigh you down if you let it and I have experienced every emotion possigle but at this point I am more settled and have found some peace.

  56. Maude Schuyler Clay said, on August 15, 2012 at 11:39 am

    This is such a beautifully-written, heartfelt, and poignant piece. I only know Mark as a (wonderful) photographer, but did not know he was also a great writer. I had aging parents (now deceased) and it seems that soon I might BE one! I sent this to my three chickadees – 25, 23, and 17. They are all loving and compassionate people, but this is serious stuff. How I would like to re-do the job I did of caring for my late father (he died at age 92 a few years back), but alas, the past is passed. My excuse (when I am racked out with guilt, which is often) was I was so busy raising children I had less time for his care.
    Love the image of the ethereal-looking little girl holding the lamb on the cover of the recent Oxford American (Best of the South issue). What in the name of Jehoshaphat will become of the OA now? I wonder and I fret. I was photo editor there for several years when it was in Oxford. Marc Smirnoff founded and ran the magazine for a very long time (Yes, he could be a jerk, but he was passionate about and dedicated to the OA.)
    Mark, keep up the exemplary writing and photography.

  57. Diane Varner said, on August 17, 2012 at 8:52 am

    I burst out crying at your last image of your mother waving good-bye. I have many a photo….

    Your work, Mark, is what keeps us humble and honest and reaching for that sacred level of universal emotion.

  58. omray said, on September 11, 2012 at 7:25 pm

    Bless you all.

  59. Eli Reichman said, on September 13, 2012 at 8:31 pm

    Hey Mark, Nicely done. All of it. All the best, Eli

  60. LynnW said, on September 17, 2012 at 6:33 pm

    Great entry Mark. Your last photo struck home for me. My mom is 92 and we have the same ritual, she keeps the door open and waves until she no longer sees my car. I am not a overly religious person but always find myself saying a small prayer for her, telling myself how much I love her and asking how will I gone on when she is no longer here. Best wishes to you and your family.

  61. Lisa Marie Hellmer said, on October 22, 2012 at 11:34 am

    Having taken care of my Elderly Step Father for 2 years (he passed away) my heart goes out to you and your brother. Dementia is a thief in the night stealing little bits of the person you love. Please try to find time to read the book “The Thirty Six Hour Day” it helped me and my husband to traverse the slippery slope of this horrible disease. And for what it’s worth hang in there you are not alone


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