Apr 042017
 

“Mom has been very belligerent this morning,” Daddy told me on the phone. I was on the last leg of my journey to their apartment, having boarded the shared taxi from Tel Aviv to Netanya. “She’s been shouting and yelling. She pushed me out of the bathroom and swore at me and called me a ‘dirty old man.’ Then she refused my help getting dressed. I wanted you to know.”

I was still about forty-five minutes away, so there was not much I could do, but I did say hi to Mom on the phone. I was hoping I could help change the situation if Mom was still in a bad mood when I arrived.

Forty minutes later, Daddy called me again. By this time I was in Netanya, walking the few blocks from the central bus station to their apartment.

“Mom was insisting she needed to go out,” he said. “We had a hard time convincing her to stay inside.”

“Oh.” I was puzzled. “Why didn’t you take her out if she was insistent?”

“I wasn’t dressed yet,” Daddy replied. “And you were on your way.”

It wasn’t worth being frustrated from afar, but I could hear the annoyed tone in my voice as I responded.

“If she wants to go walking, let her go walking,” I said. “And if you don’t want to go, you can send Sahlee (the caregiver.) Don’t use me as an excuse.”

“It’s too late now,” he said. “She’s watching her favorite Danny Kaye video, and you’ll take her out when you get here.”

Five minutes later, as I greeted her at their door, Mom was searching for her coat and bag and hat so that she could go out. She said goodbye to us as if she was heading out by herself. She was very surprised when I told her I’d go out with her.

Mom was in a good mood when we left the house, and in fact we had an agenda. I’d made a salon appointment for Mom to get her hair cut. We walked through town, stopped for a quick cup of coffee, then headed to the salon. Mom was effervescent, singing and smiling, and when she saw the beautician, she praised her many times for her excellent work. At no time was she angry or bombastic or moody. Even when we were back at her apartment and I cut her nails—which Mom begrudgingly let me do—she was happy and relatively calm.

She did say some strange, disjointed things. As we were walking home, Mom tried to tell me that people she didn’t know often recognized her in the streets. “Sometimes they see my funny face and they say hello,” she said.

“Why is your face funny?” I asked.

“It is. There’s nothing I can do about it,” she said. “But I don’t know them.”

This was wonderfully ironic as Mom constantly greets strangers with warmth and unfounded familiarity whereas the people she doesn’t recognize who say hello to her are undoubtedly friends or acquaintances. And let’s not forget that the people who care about her the most and the ones with whom she is most familiar are often addressed with anger and curses.

Later on, I called to say I’d returned home safely only to hear Daddy’s frustrated voice on the phone again. “I can’t get her to sit still and watch anything,” he said. Mom’s caregiver Sahlee was on her break, so it was up to Daddy to help her.

“Why don’t you read a book together?” I asked. “Or sing some songs. Or look at photos.”

I realized that was the difference between living with someone with Alzheimer’s 24/7 and visiting once a week. The time I spend in Netanya is fully dedicated to Mom and all her needs. There is no need to focus on other tasks and chores as I do in my own home. I don’t have to worry about anything other than entertaining Mom and giving her my undivided attention. And I can also give advice freely. I have to accept, though, that it isn’t always welcome or wanted.

With no alternatives and pangs of sympathy for my dad’s frustration, I hung up the phone and started preparing dinner.

This isn’t exactly what I made for dinner, but in honor of my mother-in-law’s visit, I indulged and made her lemon meringue pie. What do we have a lemon tree for if not for this? With Passover just a week away, and the stores already carrying Kosher for Passover products, I decided to make this pie kosher for Passover, too. There’s not much difference in the Passover recipe and the year-round recipe. I’ve listed the ingredients for the regular crust and for the Passover crust. Enjoy!

Lemon Meringue Pie
Love is a great catalyst for trying new things. As a young bride, I wanted to please my mother-in-law by making one of her favorite desserts. I hope I succeeded.

Regular Crust:
2 cups ground petite beurre cookies
½ cup brown sugar
1/3 cup oil

(These can be ground in a mixer or in a closed plastic bag with a rolling pin.)

Pesach Crust:
1 cup ground almonds
1 cup fine matza meal
½ cup brown sugar
1/3 cup oil

Filling:
1 cup sugar
4 teaspoons potato starch
1 cup fresh lemon juice
4 egg yolks
2 whole eggs
Zest of 1 lemon

Meringue:
4 egg whites
½ cup sugar
½ teaspoon vanilla
½ teaspoon lemon juice

Directions:

  1. In a small bowl, combine ground almonds, matza meal and sugar for crust. Add oil and mix until the “dough” can be pat into pie pan. Cover sides of pan to edges. Bake at 350° for 15 minutes. Let cool.

  2. Separate eggs. Place yolks in a small bowl temporarily. Let whites sit in a glass bowl.

  3. Mix sugar and potato starch for filling in a saucepan. Add lemon juice, yolks, eggs and zest. Stir until sugar and potato starch are dissolved. Turn on medium flame and continue stirring until mixture begins to thicken (may take several minutes). Bring to boil then remove from heat. Pour over cooled pie crust. Place in refrigerator until meringue is ready.

  4. Beat whites until foamy. Slowly add sugar, vanilla and lemon juice. Continue beating on high for 2 or 3 minutes until stiff peaks form.

  5. Pour meringue over pie, making sure to spread to edges of crust. Form peaks for decoration with your spatula (or spoon).

  6. Set oven to broil. Move oven rack to highest slot. Place pie on oven rack and watch carefully as top of meringue browns. Remove immediately from oven when desired effect achieved.

  7. Keep pie in refrigerator until ready to serve.

    About the Author: Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her poetry has appeared in several journals, including Poet Lore, the Prose Poem Project, Ilanot Review, The Barefoot Review and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. She holds an M.A. in Creative Writing from Bar Ilan University and a B.A. from Oberlin College. Miriam is a 20+-year resident of Israel and a mother of three.

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  68 Responses to “Funny Face”

  1. Please try to find some sympathy for your father. He is living this every day. Besides the obvious struggles of dealing with a person suffering with Alzheimer's, he is watching his wife slip away a little more every day…..knowing there is nothing he or anyone can do to stop it from happening. I say this because I lived in his shoes not long ago. My husband did at 58 years old from early on-set Alzheimer's. I'll keep you all in my prayers. ❤

    • Keep a close eye on your father too. I lost my mother she passed away in her sleep. My father was the one that had Alzheimer's and my mom cared for him until we had to put him in a home. She couldn't take care of him as he progressed but she was completely lost and lonely without him. Even though she saw him every day at the nice place we found him for memory care patients it was too much for her. So keep an eye on your fathers health throughout this.

      • WOW – I'm living this nightmare right now with my precious parents. I live just around the corner from them and was being called many times through the night to help my dad. (even after he had a caregiver to help. Finally it just became too much for us to care for her (not safe for her or for him) and we had to make the hardest decision to find a place for her. It's a very nice place, however, it is NOT home. My dad and I go every night to see her when I'm home from work and also on weekends. He is very frail himself and I worry about him being alone. He is depressed and misses her so much. Married almost 60 years, they never did anything without each other, so this is just a totally different world for him. Many tears!!! God has been so good to allow us to see her almost every single day since she's been down there (other than a bad weather day since it's a 25 mile drive each way). I treasure each moment that we have with her. At this point she seems to usually know us or at least comes around after she sees us. I think she knows our routine of being there. It seems to calm her down if she's restless. We sing daily as long as she is up to it and she evens can still harmonize with me.

        You are so right in if you haven't seen there around the clock, you have no idea how stressful this can be on the other person. It's so easy to lose your composure and get frustrated and then you have to stop and realize, they have no idea how they are being. They are trapped inside that body and can't tell you what hurts or what they are thinking. It's heartbreaking to see more of them disappear each day.

        God Bless anyone that is going through this!!

    • My mother was also the same scenario. She died at 61 from early onset alzheimer’s.

  2. What a discovery and how true … "I realized that was the difference between living with someone with Alzheimer’s 24/7 and visiting once a week." Until we've been a caregiver 24/7, it's impossible to fully understand that responsibility. Thanks for sharing, Miriam, and blessings to you and your family.

  3. My heart aches when I hear someone talking about the 24/7 care. I’ve been there. The early days are not too bad but then you know there will be no improvement. The only consolation about the personality changes are that the person you knew is no longer there. One of the people in our support group says, “It’s like an alien has taken over their body.” The support group is so important. They have been through it, they hear your “complaints” with love and caring when others may not understand. Sometimes they can make suggestions to help you get through a little piece of your struggle. Bless you.

    • Yes…my mom's support group tells her that it's not the person who is talking to you, it's the disease. It helps her during the rough patches….

  4. Very nice article ! I took care of my sisters mother in law for 2 years. It was very special and I loved her very much. It's a very difficult task. I currently am in real estate now .

  5. Your dad is screaming for help.
    I'be been there

  6. You should be ready for it to only get worse. I was living in Minnesota and my father who had Altheimers lives in waterloo, Iowa with his wife – my step mother. My DAD behaves better with her daughter than with my step mother. He has his moments with me. Sometimes when I visit – usually twice a month – he does not know me. ONE TIME HE CALLED ME HIS BOY> before he got SICK we were fairly close. One time I bought down my own Cherios to snake on BECAUSE I knew if he saw me eating HIS food he would be upset. I DID NOT REMBER TO TELL HIM BUT DID MY STEP MOM. After a hour or so passed I went to kitchen and got a bowl and put some Cherios in it to snake on. He stood up and said I better leave now if all I am going to do is eat his food. I left but got only 1 block away and cried so hard I had to stop car. I am 68 and he died in 2011 at age of 80. My mother had polio at age of 13 and was in Nursing home for almost 2 years – then passed away at age of 80 in 2005. I miss them BOTH – ALOT.

  7. My mother lives with Alzheimer’s in a nursing home where I visit her weekly. This facility is well staffed with assorted medical professionals. They are, for the most part, extremely compassionate and well-trained for their demanding jobs.

    Every time I leave, I am amazed that the people who care for my mother Alzheimer’s and others in the Alzheimer’s unit manage to do their jobs daily and do them so well.

    There is a huge difference between living with someone with Alzheimer’s and visiting that person weekly.

  8. Thank you so much for your post – It was what I needed to hear today.

  9. As a nurse i have seen some heart breaking case but I have seen a lot of love and patiences you just have to try and remember the good times and pray a lot for endurance and everything else will fall into place.

    • I am a 24/7 caregiver to my husband of 53 years. It's so frustrating to see the loving man I married change so drastically. I am blessed to have my Son and Daughter-in-law living close but they both work and I don't get any time to get away even just to get a haircut. I tried to talk to him about having a caregiver come in for an hour or so once a week, but he refuses and says he doesn't need a babysitter. I have learned there is no use in trying to argue , so I just gave up. I keep praying for strength.

      • I have been taking care of my mom for almost 11 years now (Jan 2018). I am her only caregiver and have had no respite this entire time. My grandfather had dementia/Alzheimer’s, my mom has it and there is every chance that I will have it. The frustration that I feel because there is very little I can do for now, the anger I have for this disease, and the sheer exhaustion, is all very real and palpable. I cry because I have to watch my mom disappear each day, and I cry because there have been days that I did not feel like I can do this one more day. But I do…I must. To take care of someone who has this disease is a cautionary tale to be sure, but I could not have it any other way, mom is all I have left and I am doing the best that I can.

  10. Please offer to stay with your Mom for a week so that your Dad can go away to rest and enjoy himself.
    Full-time caregiving is a job which no one quite understands unless (you) walk in these shoes.
    The greatest gift I ever received was from my cousin who came to stay with my Mom for a week
    While I took a week-long break.
    You will be blessed for this act of kindness.

    • Being a 24\7 caregiver, I longed to have someone say to me, “hey, why don’t you sleep in today, I’ll get mother (or your mom up), bathe and dress her, feed her, etc” but it never happen. I was on the brink of a breakdown, when I finally decided to do something about it. But as God would have it, my mother passed in February of this year before I got the chance to take a break. And although, the Alzheimer had long since taken my mother away, I miss her so much. So I prey for all the caregivers out there, no one truly understand until they walk in your shoe! Please, please give yourself a break, in some instances you can put your love one in hospice for a week, (although I didn’t know it until it was too late). Again, get help!! Love and blessings to all of you.

    • Yes, This will be the greatest gift to him. I am the caregiver to my mum and they are days where the world's greatest gift would be a full night's sleep, a break to be able to wash my hair, a 2 hour break to do shopping or the luxury of time away for a break. Caring is an act of love but at the same time it takes a toll on the health of the caregiver who is forgotten in the sadness and devastating suffering of the Alzhiemer sufferer.

  11. Dear Miriam,

    It is challenging living with someone who has Alzheimer’s. Perhaps your father could benefit from some educational, supportive care – learning about how to deal with a loved one who has Alzheimer’s. Instead of arguing with his wife, your father can agree and then change the subject. Disagreements only lead to more frustration and tension. If he remains pleasant and realizes that the goal is not “to change her mind to his way of thinking” – they will both be happier!!

    I don’t know the ages of your children and what their needs are, so I don’t know what your responsibilities are for them. If possible, might I suggest that in addition to coming for the day, you could offer to spend the night with your mother. Your father could visit a friend, enjoy a movie, spend the night at a relative’s home… I am the main caregiver to my elderly, widowed mother. She has lived with us for almost 5 years. My sister comes over twice a month on Saturdays. Sometimes she spend the night but I am still here. It was nice when my husband and I went to a friend’s fancy birthday party and spent the night at a hotel. We had a lovely time – celebrating, laughing, & reconnecting. Perhaps your father could benefit from some respite care too.

    Blessings for God’s strength and peace, Jeanne

  12. I don’t know if this will reach you but depakote works wonders for the mood swings. It will calm the storm and it was the best for my dad! I have been his caregiver for over 5 years now and have experienced so much! Alzheimer’s can be a blessing if you put it in perspective! This time spent with a loved one is the most precious time we will never get back!

  13. I visit my mother often–several times a week–but she lives in a Memory Care Center. I have seen many sides of her Alzheimer's, as has the other member's of our family. She was able, until fairly recently, to walk. Walking long distances, several times a day–as she did when healthy–was helpful distraction. Here body no longer tolerates walking anywhere but short lengths. So now, she is a gentle rocker. She often asks what she did to live so long…and I realize that it is not with joy that she asks this question. Hidden away–for now–is the very insightful, bright, energetic, wise, tranquil, talented in so many areas it makes my head spin woman!

  14. This tells it like it really is. 24/7 is the only way to see what really happens in the life of living with this terrible disease, for the one with it, as well as the one there 24/7.The drop in visits help the one with the disease, but too often the caregiver is being judged as not handling things as the “drop ins” would. I also know for family members that ” drop in” they have to adjust “who are you or being mistaken for someone else.” Where as the one 24/7 goes thru this a little bit day by day. Hope those who helped me thru this for eight years can accept and forgive when things didn’t go as” they” thought they should.

  15. I live just a mile from my parents. My mom has been diagnosed with dementia and my dad is her full time caregiver. I too visit but 1-3 times a week. I have a full-time job, own a business, and help my daughter with her children. Not to mention I have a home, a husband, and community activities. I am also concerned about my dad. Most of the time he says he's ok. Mom has mild-moderate dementia, though we see it's progression. I asked my dad and he said he would like to go to a support group. I will make that happen. What I'm finding out ,too, that while this is my mother, this is his wife and what we do is his choice. I will be there as much as I can to help him. This is such a terrible disease. I have found that I am grieving the woman she was because some of her has gone already.

    • I'm right there with you! Prayers and blessing to you and your family. Make memories is my only goal! Bridgette

    • I too work and babysit my granddaughter everyday. I mourn mom because she's fading away. I know how you and everyone feels

    • My daughter in-law visits once or twice a week. She is beginning to start to understand what I am living daily. Your dad really can use the SUPPORT group. You should make every effort to go with him or to a support group in your area. These are people who are going through similar experiences and can offer loving comfort and suggestions.She will always be there in your memory.

  16. I took care of my mother in law with alzhiemers she lived with me and my husband she has other kids but nobody helped she hit you all the time when you tried to take something from her, to her everything was hers we child proofed everything kitchen counters were empty because she would take everything in her room so we had to put everything in the garage she passed away in December i went to feed her breakfast and she was gone so please try and understand its a hard thing to take care of someone with alzhiemers

  17. There is a huge difference between a visit and the 24/7 care that your father is giving your mother. Not only is he caring for her, he is also grieving the loss of his partner. Even though she is sitting right there with her, she is no longer the person that he has known and loved. My mother-in-law is caring for her husband now and I sat with him yesterday so she could go have lunch with some friends. Just her having a little time away, she came back with a smile on her face. She appreciated the break. Caring for him for just a few hours to me is exhausting. I don’t know how she does it all the time. She is a blessing to him and I hope that we give her a break from him that we are a blessing to her. It’s hard for us too, we are at her beck and call, but it’s good that we are only a couple minutes away. It has to be frustrating for you to be so far away and still trying to help. I will pray for you and your parents.

  18. My heart goes out to your father, what a good man. My mom died of dementia, although I had her in a foster home because I had to work, I devoted my weekends to her, as you did. Being a caregiver for an alzheimers patient 24/7, must be the hardest job ever. I know the frustration. We feel helpless because we know deep down this is only getting worse, and there’s nothing worse than seeing your mother deteriorate. Your father is a committed man, your very lucky that he chooses to care for your mother instead of placing her in a nursing home. You need to stay a whole weekend with your mom, I’m sure your husbands a big boy and can take care of himself, and send your father somewhere for the weekend, maybe he has a sibling or cousin or someone he can stay with, he needs this rest. After being with your mom for a whole weekend by yourselves, you will appreciate you father more than ever.

    God Bless you all.

  19. Totally understand!! In my situation, my dad is also a 24/7 caregiver but we are lucky enough to have my brother who owns his own company and was able to hire me full time to help my dad take care of my mom. But it still takes a toll from on my dad, just like everyone else it’s like just as I leave her mood changes. I know it’s different just with them being different genders as well as different emotion that’s felt differently between mom and dad. What I get from my mom is that I know her better because we are both females and I know what she’s going through. I make all the meals because my mom always did all the cooking. She hasn’t cooked in three years. It makes me so sad but being able to spend this quality time with my mom and dad makes me feel so much better! I wouldn’t have it any other way. I’ve always been a caretaker whether it was children that I helped raise in our family for 20 years or parents ❤️

    • God bless you for doing the right and loving thing in taking care of your parents. As God says "Honor your father and mother that your days be long on this earth". You love them and want only the best for them. Please don't neglect your health both physically and emotionally. God loves you and wants only the best for you, his child also.

  20. Miriam I think your dad needs to create a routine your mom which help with everyone’s frustrations. Please check out our book – The 24 Hour Rule: Living with Alzheimer’s. The book is available on Amazon. Your dad needs to take care of himself as well. Remember, everyone in the family has Alzheimer’s, not just your mom. My husband, Michael Folio was diagnosed in 2012, I am his full-time caregiver, advocate and loving partner. I have help/support 4 hours a day but its still very challenging at times. Our book is about creative strategies that we have used that have kept Michael “status quo” for 5 years.

  21. Thank you for sharing your story and your readers above. My husband had and we were fortunate that one son was living with us. Going through the stages of his disease progressed so quickly, as we encountered his behaviors at various levels. He was always able to enjoy meeting people, talking too personally with strangers (where DID his watch go? as a gift to someone on the street?) , his navigation skills were unusually intact as he would, in early stages, do his banking in the middle of the night, eventually "corrupting" the computer files beyond repair. We had a grand moment when we had to find out what he'd been doing with finances trying an "intervention" approach, ending in a physical attack. From there on we realized how sick he'd become. As a professional social worker in a full time job, raising three teenage grandchildren it was hard to respond to the tales they had of his antics, and we eventually were able to access an assisted care facility for him. For financial reasons we brought him home after making logistical changes for food and other accommodations.
    So, watch out for changes in your dad's physical and mental well-being. His helper will not be enough to cover what he needs when your mother reaches a new level of care. The burdens you have are overwhelming with the distances you have to cover in order to provide for them. My heart goes out to you. Shalom.

  22. So great to read all the comments. My father is also the 24/7 caregiver for my Mother. I am still trying to get him to a support group. Mother who is verbally aggressive with him always seems to give him the guilt trip so then he doesnt go. Am going to try even harder after reading all of this to get him some time away.

    • Don't just try. Take him. The support is for you too. You will learn a lot of great ideas.They really will understand your situation and appreciate what you are doing.

  23. All these stories are so similar to what my brothers and I have been going through. My father was my mother’s caregiver for the last 6 years prior to his passing in 2015. It was so hard for him to deal with my mother and didn’t understand what was going on with her. Every time my brothers and I would visit, my father was always cheerful and never lead on that he was going through a very tough time with mom, he didn’t want to bother us! Stubborn Italians!!! So he suffered in silence until he couldn’t handle it anymore and had a massive stroke which took him short of his 86th B-Day. We’ve had a wonderful in home caregiver for the last 2 years and mom is still hanging on but slowly deteriorating. My brothers and I rotate weekends so the caregiver can get some rest and some of those weekends are brutal, I can’t imagine what my father was going through! I thank God for my brothers and we love our mother so, just hard watching the progression! God bless us all!!!

  24. The sad part is you don’t fully understand Dementia/Alzheimer’s until someone you love has it. Fortunately for me I was able to move Mom into Independent Living when I realized she couldn’t stay alone. Unfortunately I didn’t realize how quickly the Dementia was progressing until she started screaming at me and hitting me. The community she was in was a CCRC (Continuing Care Retirement Community) so I was able to move her through the levels (Assisted Living, Memory Care and Skilled Nursing) without having to move her out of the facility. I received many phone calls and made many trips to calm her down.Your father certainly needs to have some time away-he is exhausted. Good Luck-You are in my prayers.

  25. I have been caring for my husband 24/7. All the neighbors and my son say, “How is he doing? Is he depressed? He must feel so frustrated.” No one sees ME – I am the invisible “thing”. My husband is not unhappy. He has no worries because he does not understand anything except his body comforts: hunger, cold, warm, etc. I am the one who needs someone to talk to. The 30 minute relief by the family is not enough time to go out and make friends.

    • I am caring for my mother with Alzheimer’s and I will tell my sister stories about things happening just so when/if I have to move mom to a facility it’s not a total shock to my sister. Her response is always poor mom. Mom is the one who just yelled at me, poor mom? I make a point when talking to other caregivers to try and make sure they are doing well, it’s not an easy task. I am sure it’s different with caring for a spouse, you don’t want to burden your children, but it’s also important you get taken care of, let your family know you need a weekend or longer respite care is out there, use it if you have the finances to do so, if not then find the friends and family that can contribute some time (days) to help you.

    • You not only need but deserve a support group. Since no one else is taking care of you, you MUST take care of yourself. Call the Alzheimer's association for a support group in your area and attend religiously. Other support partners know how you feel and can appreciate all you are doing.

  26. I am so glad, that you do realize the difference between living with someone with Dementia/Alzheimers 24/7/365, is very different from visiting once a week. I was the 24/7/365 caregiver for my husband with Dementia, and I can tell you that the nice, sweet man I married, was not the same man with Dementia that I was taking care of, and as the years went by, and his illness progressed, he was more and more difficult to care for. To say that the caregiver is exhausted, is an understatement. And, yes, my family, in trying to “help” me, gave me lots of advice…which I respectfully listened to and usually had already tried. We all need to keep this in mind…the caregiver is doing the very best that they can…caregivers are subjected to a lot of negativity and refusal from the person they are caring for, and they do not appreciate, nor do they understand, what the caregiver is trying to do for them…which is taking the best care of them that they can. Most everything needed for the person with Dementia/Alzheimer’s, is met with “No, I don’t want to do that, eat that, or try that.” And, we as caregivers, know they do need to shower, they do need to eat, exercise, etc. I suggest that each caregiver attends a support group meeting weekly if possible. The suggestions from others dealing with similar problems with their loved ones, helps more than almost anything. Their suggestions helped me many times. Please help to give your Dad as many breaks from caring for your Mother as you can or find ways for others to give him breaks…that would be an appreciated and a life-saving gift for him. Often times the caregiver passes away before the person they are caring for because of the constant stress they are under, and they are beyond exhausted. I pray for everyone caring for their loved ones with this cruel and mean illness.

  27. I tried to be an understanding caregiver to my wife at home for a couple of years. When it reached the point she needed more care than I could give, we moved her to a Memory Care unit locally. She died 6 months later. While she was at home, and also at the Memory Care unit, I didn't realize or fully comprehend the effects the disease was having on her. Someone gave me the following poem. I wish I could say that I understood and responded as the poem suggests. Anyway, it is instructional and profound.
    Joan Mesadrdjian of Spartanburg shares a poem, author unknown, with caregivers and those who are or will one day have to deal with a loved one battling Alzheimer’s disease. Keep the following close, and read it often for encouragement.

    Till my life is gone

    Do not ask me to remember. Don’t try to make me understand.
    Let me rest and know you’re with me. Kiss my cheek and hold my hand.

    I’m confused beyond your concept. I am sad and sick and lost.
    All I know is that I need you, to be with me at all cost.

    Do not scold or curse or cry. I cannot help the way I am acting. I can’t be different, though I try.

    Just remember that I need you, that the best of me is gone.
    Please don’t fail to stand beside me. Love me till my life is gone.

    • What a beautiful poem. I will keep it close and read it often.

    • Dear Jerry, the poem is beautiful..But we love them more than ever after they are gone. I was a care giver for my dear, generous, husband for several years. I took care of him, by myself, until one day he slid off the couch and laid on the living room floor. I had to call paramedics. They took him to hospital. After 3 days in hospital, they took him to Hospice House. He passed away ten days later. I feel like I never got to say goodbye to him. That was Sept. of 2016. I miss him more every day. God bless you for taking care of your wife…
      Shirley K.

    • This is a beautiful poem. Thank you for sharing.

  28. My mother was diagnosed in 2010 and I have been living with my parents for 3 1/2 years. I receive 12 hrs a week of respite care from an agency. I cry every day and am so angry and resentful of my two siblings. I feel damaged and it is unbearable when my mom cries. We have ALWAYS been very close. I have overwhelming feelings of hopelessness and just wanted my mothers last years to be at least happy. She was such a vital, social person. Gifted in so many ways and a giver to all. My beautiful mama had tons of friends. They have all forgotten about her. I have two brothers (one who lives 3 blocks away and owns his own business. They do not participate in our mothers care or visit her. I am so disgusted. She was the best mother. I love her so much. I don’t know how much longer I can go on with this.

    • We thank you for your comment, Denise, and offer our support. This is such a difficult disease for everyone involved. Please reach out to us at 800.272.3900. Our 24/7 free helpline is staffed with professionals who can listen to your thoughts and provide resources, comfort and feedback.

    • I understand how you feel. I was my Mom's caregiver for 3 years. Yes, it was very challenging, and many times I just wanted to give up, I was so overwhelmed and drained, from losing sleep. We are a family of eight brothers and sisters and I too would get disgusted with them too. They would visit for an hour, and put in their 2 cents in about my Mom's care, and then leave. They would visit again 2 weeks later or even a month later and brag about trips they took or events they attended. Just so insensitive. I honestly wanted to run out screaming. I too cried daily. I took care of my Dad too after his stroke, and same situation with family. Even now I have resentment towards them because they just don't get it. They just don't. It would hurt me so bad, but I knew Mom and Dad appreciated all my husband, my Kids and I did. I would do it all over again for my Mom and Dad. One thing I had to remember was that taking care of them was my purpose. My whole reason for being here was because God wanted me to take care of my parents, he chose me to be there for them. It took me time to fully understand, but I finally got it. Thank you Jesus.

  29. My husband is mid-stage early onset Alzheimer's. I work full time and am the only source of income. No savings to speak of. Our house is mortgaged. Luckily, I have a good job and my employer is very good about time off, but I have no idea what I am going to do when my husband needs someone 24/7. He is a UK citizen living in the US as a permanent resident and is not eligible for SS, Medicare, in this country and not eligible for disability from the UK since he lives in the US. We can't afford a care facility and we can't afford for me not to work. We moved across country for my job 6 years ago, two years before his diagnosis, and have no close friends or family within 2000 miles. We have a caregiver from the local Senior Center that comes in a couple hours a week. She is great, but at $27 an hour, it adds up fast. I don't know what to do.

    • Katherine,
      My thoughts are with you- Have you checked to see if your area offers any kind of senior services that he may qualify for receiving (locally or state services)? My mom qualified for 8 hours homecare ( which didn't really help when it came to caring for mom's Alzheimer's') but it gave my dad a little break. Now she qualifies and goes to an adult memory day center 4 times a week, which is usually a battle to get her on the bus. So many of these stories I read sound just like what we are experiencing in our own family. I think it would be easier to care for a stranger sometimes than a family member because this disease has turned them into a totally different person and it is so heart wrenching. Try some way to relieve some of your stress and know you are doing the best no matter what decisions you make down the road-

  30. Our long journey just ended with Mom's death last month. There were times when I thought the care giving would end up taking Dad before the disease took her, and sadly there were times when I thought the end would never come. Our goal was to keep her home, and we did, although with much difficulty. Dad was the 24/7, and luckily since I'm retired and close-by, I was there every day to give him a break, and twice a day toward the end when tending to her was a two person job. I agree with the comments regarding visits, you have no idea the reality of 24 hour care giving until you do it, so be mindful of the well intentioned advice unless you have walked the mile in their shoes. Watching Mom's constant decline the last several years (in hindsight decade before you realize what is happening) was heartbreaking, and taking care of her every need from feeding to bathing to toileting to dressing to moving her around was exhausting. No one tells you about the combativeness, the agitation, the accusations, the coaxing, the arguing, the "can't take your eyes off of them for a minute" phase, which appears commonplace based on some comments. All you see is everyone in the Alzheimer's commercials being sweetly docile and happy. My heart goes out to everyone in this situation, and I wish you patience and compassion above all else. My Mom's doctor gave me a very good book, The 36 Hour Day, which I recommend for reading as early in the disease as possible so you can be armed with the possible progression behaviors and best ways to cope in advance. When the days are so overwhelming and frustrating that you don't know how you will get through it again tomorrow, please know that when the end does come, you will be comforted that you did the best you could, and have no regrets.

  31. My dad is also the caregiver of my mom. He is now 90. He is overwhelmed, tired, frustrsted but will not get any outside support. I watch mom a few times a week. Many times she wants to leave and doesnt eat much. She thinks he's a stranger. In my eyes he could use a professional but,he shuts us all down so I don't say much any more. I get nervous because mom needs certain things he cannot do

  32. Please give your Dad a week’s break fairly often. My Dad was determined to care for my Mother himself. While that is loving, he died 3 years before she did because he worked himself to death. I wish we’d MADE him leave her for brief times so he’d still be here.

  33. Thank you for sharing this article. But, it’s somewhat disturbing. Your father is crying for help. Although there is a caregiver for your mother. He still requires much more support when the caregiver goes home or calls in sick. I agree with many of the previous comments whereas you need to spend a week(overnight) to experience what your father has to deal with daily. Send your Dad away to stay with one of his siblings or long-time friends. Give this man a break before you have two parents to take care of. I am 45 years old and 1year and half ago, I moved my mother from Virginia to Maryland to live with my husband and teenage nephew. Trust me when I tell you, it’s a lot of hard-work. Even though we have a caretaker there are days when she’s out sick or has to take care of one of her aging family members. Being a caretaker for a loved one with Alzheimers or Dementia is a not an easy task for anyone. When I take my mother to her doctors’ appointments, oftentimes her doctors will ask me, “What I am doing to take care of myself?” They have all recommended that I seek out a support group. I haven’t done it yet. I’m a long-distance runner so I consider that my therapy, but I think later this year I may seek some support for this debilitating disease. Miriam, I know you care very deeply for your parents, but if you don’t start helping your Dad out more instead of a once a week visit- you are going to have two parents to take care of. God Bless Your Father-He is an amazing man for taking care of your Mother and not putting her in a facility.

  34. Janet is so right! Your Dad needs a break of at least 3 or 4 hours EVERYDAY! He needs to do something he likes to do & something that is a stress reliever! (Exercise maybe?) If caregivers don’t take care of themselves then they will suffer health issues! This is the only thing that keeps me sane while I’m taking care of my mom! (she lives with us) Luckily I have 2 caregivers who alternate days so I can get away 5 out of the 7 afternoons of the week for working out, taking long walks, shopping, etc. When you are taking care of a person 24/7 this is not too much to ask! Hopefully your dad is doing this!!

  35. My heart goes out to you and your dad. My mom had Alzheimer's and my sister and I were her caregivers. It was difficult because my sister lived in the northern US and my mom and I lived in the southern US. She eventually was in an Alzheimer nursing home and she passed away 2 years ago. Right before she died, my husband was diagnosed with early onset Alzheimer's and I am his sole caregiver. No one can know the grief of watching a loved one slip away in slow motion and be helpless to do anything to stop it unless you've been in the same situation. This disease is from the pit of hell. I thank God who gives me the strength to face one more day. I pray God gives you and your dad strength, patience and peace. God bless you and your mom and dad.

  36. Perhaps you can spend some time with just him on your visits. He would probably appreciate your listening ear and empathy. I have spent several years working in the caregiving field and have seen what toll it takes on the spouse caring for their loved one. My parents are now entering this same situation. It is so difficult. God bless you, and everyone living this life with dementia.

  37. Thanks very much for including this article and for all of those who responded thus far…I have three brothers, all of whom live out of state, while I live fifteen minutes from my parents. If only I had the time and an extra room, I would love to have my mother come and live with me. Unfortunately, I have a full-time job and a disabled husband, so I can only get over there on weekends, though I do call to check in on them during the week. My mother is a bright, smart, joyful, loving individual who raised four children while working full-time, kept a beautiful home, was active with her synagogue, volunteered for causes and donated to various charities. She didn’t exhibit any signs of having Alzheimers’ disease until after her eightieth birthday party; then it was like someone flipped a switch, and things progressed very rapidly…her personality hasn’t changed (if anything she is even sweeter and more considerate than ever). She gets confused about things a lot and can no longer drive, cook, pay bills, etc., but thankfully she still knows who we are. She realizes that she has difficulty in remembering things and getting her words out, and often catches herself saying things that make no sense and laughs about it. When my father is either napping or downstairs doing laundry, she gets restless and starts moving things around (she was always very clean person, so she thinks that she is ‘helping’), then my father can’t find them and gets angry and yells at her (my father, who has been very mean to her for her entire life, hasn’t changed either!). He does not make wise decisions in terms of safety (his own mother had dementia, so he should know the drill). He will not listen to me, a former firefighter, either in terms of things that he could do to cut down on her moving things around, or in terms of safety issues. As a mandated reporter, I’ve had to call on the eldercare authorities numerous times to come help. I tried signing him up for local support group meetings and getting someone to watch my mother so that he can go, but he stopped attending. I am in the process of trying to get him to use the longterm care insurance that they have so that she can live in a safe and happy environment so that the stress will be taken off of both of them, but it’s like pulling teeth to get him to do anything! Things have finally gotten to that point where he has admitted that he needs to have her go to a memory care facility. As much as possible, I’d like to get everyone in the family on the same page as far as what to say to her when the time comes, as it will be unsettling to her, to say the least. Does anyone have any suggestions on what words we can use?

    • Thank you for your comment and story, Stacey. Please call our 24/7 Helpline at 800.272.3900 to speak to someone about this topic. Our professional staff can provide you with advice in navigating this transition.

      • Hi Stacey,
        I'm no expert but can tell you from experience with my mother in law that less is more. Make sure everything you put in her room is familiar but don't overwhelm her with stuff that you think she would want. Memory care is about quality time not possessions.
        Peace to you and yours.

  38. I volunteered in an Alzheimer’s dementia unit in a nursing home for a couple of years. What I realized is that any caregiver or family member, or volunteer, has to be willing to “live in their world”. They are not coming back into our world. It’s tough for the rational mind to do this but it helped me a lot as a volunteer.

  39. I have been in your shoes and am here for support. Here is a poem that helped me understand my mom.

    Alzheimer's Request

    Do not ask me to remember,
    don't try to make me understand
    Let me rest and know you're with me
    kiss my cheek and hold my hand.

    I'm confused beyond your concept
    I'm sad and sick and lost
    All I know is that I need you
    to be with me at all cost.

    Do not lose your patience with me
    do not scold or curse or cry
    I can't help the way I'm acting
    I can't be different though I try

    Just remember that I need you
    That the best of me is gone.
    Please don't fail to stand beside me
    love me till my life is gone

    -unknown

    I hope this helps, just remember, a day at a time

  40. I have talked to several friends who are dealing a parent with AZ. One of them told me that they believe that caring for her mother killed her father. They saw after the fact the stress that was building in their father and it finally killed him. I had to place my wife in a Memory Care Unit. There were family and friends who questioned if she really needed to be in the unit. They were able to visit her and she seemed to be fine. I even had someone tell my daughter, who was the other main care giver, that we were wrong and we should have hired a home care giver to be with her and care for her in our home. What people don't understand is that as a spousal caregiver is that you almost become a parent rather than a partner. Your spouse want to go for a walk and you have to drop everything to join them so they don't get lost or fall and get hurt. Once My wife walked out after an appointment and was going to walk home (about 2 miles). When I ried to pick her up and give her a rid home she got mad and yelled at me. Later I got phone calls from several merchants that they had items on lay away for her, including tops and dresses that were two small for her. Trying to have her do something she doesn't want can end up in a major argument and you can not win an argument with a person with AZ. Our life became one battle after another. We would plan to do something and then have to change plans because of the weather and she would become mad and angry at everyone (except for our granddaughter). If you did go out to visit a museum you could not enjoy it because I had to watch her and be around with out hovering. Being a care giver is a 24/7/365. You can not even go the bathroom without getting her interested in something that could keep her occupied for a couple of minutes. Many times during the day your spouse may nap and come evening when you are ready for sleep they are wide awake. If you go to sleep your spouse may decide to cook a meal or go for a walk or think that it was time to go to work. The caregiver ;is never off duty. Even when someone else is giving the care you are always waiting for that phone call. The stress is constant and always there even when you are away from your spouse.

  41. I have been the caregiver for both of my parents and in December 2016 my father lost his battle with a brain bleed from falling in a grocery store. My Mother has had Alzheimer’s for years now she even had a hand in getting me fired from a 38 year career in which I did not receive my full pension. I have lost all my friends all I do is try and take care of her my main issue is trying to get her in the bathing mood. I do everything in the home. I am the cook, yard woman, cleaning, bill paying, financial person and I am sitting here now trying to everyone’s taxes. I am getting to be a very bitter 60 year old lady. My Mother is almost 78 we are close in age. I am too young for social security and Medicare so I live on my small pension. Our relationship is very strained due to her beatings that lasted until I was 30 years old. This set up a lifetime of others abusing me too. I am so tired it would be great to get even 7 hours of straight sleep. Mother can’t seem to accept my father’s passing. I pray constantly to God for help and I do get strength to go on it’s not a good life but it’s better than us not being here. She got up this morning feeling bad because I believe from not having a bath in 2 weeks but the shrugged me off and said no. I know she would feel better if she would let me help her more. The front door was unlocked this morning when I got up pretty scary first time she has done that I checked to see if we had been robbed but all is good. I have nobody around me that has to live with this 24/7 but myself. We don’t have the money to put her in a home and I don’t really want to because I love her and I want her to get better in spite of what I know is coming. Happy Easter everyone and thanks for allowing me to vent.

  42. I am caregiver for my husband who has dementia, We both lost our jobs because of his diagnosis. He is still showering, dressing himself everyday but his memory and speech are almost nil. We are in a couples support group which has been the best thing for both of us. He loves his group and I’m in a caregiver support group at the same time. This is with the Alzheimer Assoc. in northern CA. I also attend a wives support group twice a month. I also took a 6 week course on the “Savvy Caregiver” which was an eye-opener for what lies ahead for us. I urge you to get as much information and especially support that you can because this is a very lonely journey for all concerned without support.

    Also google the name “Teppa Snow” and listened to all that she has to offer, she is funny, truthful and so knowledgeable on every aspect of Alzheimer/dementia.

    It is so helpful to know that you are not alone and that there is help for you.

    Ellen

    • I lost my husband Frontal Temporal Lobe Dementia 5 years ago. I learned so very much from being a Caregiver and can tell you that there are many silver linings that I did not expect. They come at moments of sheer despair but I was taught to remember that my loved one just cant make new memories but is still the same person inside. They just can't tell you that as their brain is dying with this horrific disease. Hold their hand, hug them, sing with them, look at old photos with them, take them for walks.

      I had the help of reading the Book,The 36 Hour Day which was extremely helpful. I also had the opportunity to attend a Conference in which Teppa Snow was the keynote speaker and it gave me many answers that I had been searching for and could not seem to find. The Alzheimers Association is very helpful as well as Local Support Groups. They helped me immensely.

      I also had the ability to hire Companions part time to be with my Husband while I worked. I also brought in an Art Van Organization to work with my Husband 2 days a week as he was a wonderful Artist. He painted right up until his death. I now how a Gallery of his work on my wall for all to admire and remember him. I also found a Respite Care Organization that took my loved one for 3 hours twice a week. He loved it there and they engaged him in many ways that I could have never imagined. I gave him Ice Cream everyday as this was his favorite!!!!

      I found out the hard way that I needed to take the time to take care of myself as it was difficult to take the time to do this. I lost 25 lbs and was so tired that I didnt know my own name. Finally I realized that I could no longer care for him at home as it wasn't safe for both him and me. I took him to an wonderful facility that was 5 minutes from my home and he lasted there for 13 months. I could still see him everyday but not have his day to day care heaviness on my small shoulders. He passed in my arms with me singing to him and it was very peaceful and gave me a start of closure. The Care was incredible, and I still felt like I was involved in his day to day life but that I could just be with him and not worry about anything else.

      My Husband was 72 and a high functioning Executive for many years. I feel at Peace with his and my Journey together during these difficult times. I wish you the very best, Karin

  43. Ah, yes. I too have a father caring for a wife full time with late stage Alzheimers and a caregiver assistance reduced to 4 hours a day, 4 days a week because of the huge cost and the many years of caring for her at home with him hat she has wanted to do.
    I live across town, have a small home of my own; visit frequently to assist him and I see the same frustration in him as you occasionally see in my your father on your visits. I thoroughly understand what he is constantly going through since she sometimes overwhelms me with her demands, complaints, biDckering and even silent treatments. I know "it is the disease" and I too am experiencing the frustration he is. Unfortunately, it is very difficult for both of us to do the best we can, see the declining of those you love and realize he knows he no longer has a wife but has been reduced to only a caregiver. It's a thankless responsibility, an emotional roller coaster and a financially draining burden. What' worse, this disease is an ongoing epidemic in every aspect.

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