When do you stop the Alzheimer’s meds?
by mymothersbrain
Recently, researchers were disappointed by the fact that a new, potentially groundbreaking drug called Dimebon failed to do any better than a placebo in a phase III clinical trial. A previous smaller study seemed to reverse the effects of Alzheimer’s.
Here is a link to one of the stories about the trial and a link to the Alzheimer’s Association statement about the drug.
http://www.alz.org/news_and_events_dimebon.asp
http://www.google.com/hostednews/ap/article/ALeqM5hwSCiyJknetAK_U1v6H52e7UAiJQD9E7AKMG0
There are several drugs on the market right now that slow down the disease — including Aricept, Namenda and Exelon. My mother takes both Aricept and Namenda, and was on Exelon for a while. The big question for me came up as a result of a support group meeting John and I attended. Doctors and researchers seem to agree that the current drugs available benefit patients for a year or two, and maybe a bit longer. But as someone asked at this support group, what happens when the drug stops benefitting the patient? Maybe these drugs can extend the length of someone’s life even after their other benefits stop. Is it fair to keep patients on the drug simply to extend their lives when they can no longer walk, talk, feed themselves or even make eye contact with a caregiver or family member?
We discussed this at a conference John and I had with his mother’s caregivers. Because my mother-in-law is totally dependent on others now for mobility and feeding, we were concerned that we were facing the decision of whether to keep her on the Alzheimer’s drugs or take her off them. The hospice nurse gave us some clarity when she told us that anecdotally, taking a person off the medication seems to accelerate her decline. For instance, she will lose her ability to swallow faster once she’s off the meds. So, when do we know it’s time to let go — time to take someone off the Aricept, Namenda or Exelon? Again, she said that anecdotally, an Alzheimer’s patient will start “pocketing” food in her mouth without swallowing it, keeping it in her cheeks, as if the body is finally saying it’s time to let go.
We were relieved to hear this because despite having to be fed by hand, my mother-in-law still has a great appetite, and she still occasionally makes eye contact with us, though she doesn’t really speak to us. It isn’t time for us to make that decision, but we foresee that it’s coming and it’s not going to be easy. I hope we have the courage to do the right thing when that time does come.
My Mother's Brain: love in the times of dementia 
I am also going through the journey of Alzheimer’s with you all. I know how you feel. I wanted to just sit down and cry so many times but held my tears back because I needed to be strong for her, my mom. She will be 88 this week and I don’t know how to celebrate it with her, she is in the last stages now, all meds stopped and her decline has been very drastic..The other night my husband woke me up saying that I was crying and sobbing in my sleep and that he was worried,he most have known why my sobbing but I just said I had a nightmare..God is with us all through this, I just don’t know what the lesson is in seeing my mom die in such a painful, degrading way.
I’m so sorry you’re going through this. It’s a difficult journey. Your mother may not know she’s a year older. She may not know what it is to celebrate anymore. My mother certainly doesn’t think in those terms anymore, but we celebrate her birthday anyway because we are honoring the life she led. We are honoring the woman she was and the mother she has been. I believe that we are our best when we can look back at that. Your mother certainly inspired you to love, and I hope that this knowledge brings you peace as she turns 88. Sometimes, I feel that best lesson I’ve gotten from this journey is the gift of being more compassionate as a result, the gift of being more human. And that includes acknowledging that along with joy, I will feel pain, too.
Those are very conforting thoughts. I appreciate your comments and I am inspired by your kindness. In this journey we all can learn from each other. Thanks
I moved from So. California 6 months ago to take care of my83 year old Mom who has dementia (diagnosed 4 years ago) and my 82 year old Dad who has Parkinson’s. They can not afford any care facilities and neither can the family. I am overwhelmed to say the least. It is heartbreaking to see my parents who were once avid golfers and world travelers using walkers and barely able to bath themselves.
After I was here 3 months and had checked her medication through many different sites I made the decision to take her off Aricept. I have only noticed one change- She is very combative when she is awake.
Currently she is taking 2 blood pressure meds, cholestoral meds, afib meds, thyroid meds, and potassium. She also has a living will saying she does not want to be kept alive but thats what all these meds are doing. She tells me every day to “just take her out to the woods and shoot her.”
Apologies for my tardy response! This is so awful, I’m so sorry you’re going through this. Do you have any help at all? Do you have any time to take care of yourself? In the early days of this journey I found support groups very helpful because I could say anything and every single person understood what I was going through. Some days I really just wanted to scream. I so hope you have someone you can talk to who can support you. I do agree that the medication issue is very difficult. Until there is a pill that “cures” I can’t say I’d want any medication either if I were the patient. But I will never know the honest answer to that unless it happens to me because the will to live is so strong. Wishing you the best on the rest of the journey!
My mother in law is in the later stages of alhizmers. I hate this disease. She recently turned 80.She was diagoinsed in 2008 and the disease has progressed so fast. She was a very vibrant woman, a business owner, worked 6 days a week, kept a clean house, gardened, attended church and was a great cook, now she does none of these things. All she does is lay and sleep. She can still get around some..most times needs assistance. She shuffles when she does walk and it is only for a few steps at a time before she needs to stop for a moment or so. We do everything for her, bathe her and feed her although every now and then…she will pick up the spoon and feed herself. She has been having a few seizures. Just something else to stress about with this disease. So we are all on alert 24/7.She recently had one and fell face first and ended up with many facial fractures. Also had trouble with blood clots in her lungs. Have appt. next week to see if there is a need to keep her on the blood thinners. Praying that they are gone. Have been reading alot about families who are debating about taking their loved ones off of the alhizmers meds. she is starting to have issues with swallowing.I know that this means another part of the brain is now gone or going. How does one know when the meds are no longer any help?
Cherie, how is your mom? I’m sorry I just saw this comment. I’ve been in El Paso caring for my mom over the holiday and getting ready to head home after New Year’s. I don’t know how you can tell when the meds no longer work. There is so much new research every day, and differing opinions about the meds and what they do. It’s all so confusing. Just when I think I know something definitive I learn there is a new opinion. I used to think that when a patient is off the meds, they take a steeper decline, a faster decline, but now I don’t know. I mean, if the meds have limited effects, how is one to know? I hate the indignities that this disease brings on. And this holiday season has been very difficult for me emotionally. It’s hard to be happy for others when your own mother is suffering. I hope you are coping and that you have help.
Beatriz
My Mother is 83 and in the moderate stages, diagnosed about 3 yrs. ago. She can still walk, though not very well, eat, and maintain conversation in the moment. On the negative side, she usually so dizzy she can’t keep her balance, she has fallen several times and broke her nose last week, she is scared and confused most of the time, and she constantly asks me “why am I still here? I don’t want to be here anymore”. Another issue is that I am the only one to take care of her, the only one she has, so I have had to stop working to be her full time caregiver. With me not having any income, finaces have become a serious issue. Once she passes the “donut hole” on her medicare (about 6 months worth), we have to pay over $400.00 a month for her mads until the start of the next year. She has no assets other than her $1043.00 social security check. After paying for her meds, utilities on the house, insurance, taxes, groceries, etc., there is nothing left. I’m afraid that soon I will have no choice but to stop her meds. Pharm. companies should be ashamed of themselves for their outragious price gouging. If a gas station owner raises his prices a few cents, the goverment is all over them for price gouging, so why don’t they go after the Pharm companies? I think we all know why…they have the politicians in their pockets. Sometimes I hate this country.
Mike, there is help out there. The pharm companies will help. If she doesn’t qualify for medicaid or gov help most manufactures will assist with free meds. I know Exelon is from Norvortis and Namenda is from Forest Labatories. Both have a patient assist program. Good luck.
My Mother was diagnosed with alzhiemers. And has been on Aricept and Nemenda. She has recently had a rise in her blood pressure and increased hostility. Her meds where increased to accomadate her worsening symptoms. I sometimes wonder if her life is one that is worth prolonging, I know based on the person she was that this is not how she would want to conclude her life. I have been faced with many hard decisions and if I had the authority to make this one I would choose to end her nightmare without hesitation. I love my Mom and want her to live but it seems like the parts of her that mattered the most are gone already so what’s the piont in these inaffective medications. That is all, no bright side to this one, no positive spin. Just me wishing things could be the way they where before alzhiemers took my loved one away.
kenneth
Hi Kenneth,
I’ve been away so I hadn’t seen your comment. I’m sorry about your mom. I am certain that most of us would agree with you on this point. It is very difficult to watch someone you love decline to a point where we know they wouldn’t want to live. My sister and I said early on in our mom’s disease that a swift heart attack might have been easier to bear than this. Yet, at this point I think she continues to get some joy out of life. When she no longer does that, I am certain it will be even more difficult for us. Wishing you peace.
Beatriz
It is surely the worst l, when it gets the time of hard decisions such these, our hearts are fille with sadness and despite the fact that my mom is still looks beautiful at her age, the mind that suports it is long gone, We have decided to reduce and now stop with the AD meds, once they are not enhacing her lifestyle at all, but first and foremost comes her comfort and dignity. AD is most definitely an inglorious thing. .. I have not posted anything since our ordeal started 6 years ago,,,, all the stages were terrible,but at the last stage, we, caregivers, love ones are so touched and sorry for her, that is no longer a matter of hability to live or survive, but not to suffer and loose it all. However,,, life is to us given and for us not to take,, therefore with or without the meds,,,, LET FAITH LIVE, and keep strong you all, Best wishes to all AD patients caregivers around the word, It is not easy !! Weber Feres , July,2012
Hello everyone,
It’s comforting to know that I’m not alone. Not that I’m happy others are going through what I am with my Mother’s dementia. She’s in her final stages of AD and has been pocketing food in her cheeks for some time now. I am going to start hospice services soon for her to keep her in the wonderfully caring and supportive assisted living facility where she resides. It’s heartbreaking for me, but I think it will soon be time for me to decide to stop the meds and just tell them to keep her as comfortable as possible. That’s why this blog entry struck a chord with me. I’ve been experiencing this with her for the past few months. She’s getting Ensure for vitamin purposes, but really, what is her quality of life this way? I know my Mom very well and she never wanted any life-extending efforts on her behalf if there’s no hope to be cured. So with a heavy heart, I will inform hospice to stop all meds.
Hi Gary,
Is your mom able to walk still? Or does she need to be in a wheelchair? Does she talk at all? My mother-in-law is still hanging in there, though she’s pretty much like an infant. No walking, no talking. She has been on hospice for over a year, maybe two, and the fact that she is clinging to life astounds me. I wonder if it’s her brain or her body that is so determined to live because I know she, too, would not want to live on these terms. When you get hospice let me know what they say about stopping her meds. There are so many opinions out there on this. I would love to know what you hear on your end. I’m do sorry about your mom.
Beatriz
Hi Beatriz,
Thanks for your reply. Because of pressure sores on her feet and an absess on her left leg, my Mom hasn’t been able to walk since before Christmas 2011. She’s been in a wheelchair. I understand pressure sores are common for AD people. She can still talk, but is mostly incoherent. I think she still recognizes me from time to time, even saying my name a few times last week and my uncle’s name a few days after he visited her. So there’s still some cognition/recognition there, albeit limited. But like FloridaSteve’s reply, my Mom had signed a living will years ago that no unnecessary ways to keep her alive if there’s no hope. And I think she has far exceeded that stage and that it’s time to honor her wishes, as much as it breaks my heart. I will let you know what hospice’s stance is regarding stopping meds. That’s amazing that your mother-in-law is hanging in there. A similar situation is occuring where my Mom lives. Another resident has been on hospice and meds stopped 6 months ago and she’s actually IMPROVED! As far as walking, etc. So it makes me wonder, are we just keeping the drug companies in business by continuing to give late-stage AD people these drugs? I realize everyone’s different, but it stoopped me in my tracks and made me really think about this issue. Best of luck to you & your family and your mother-in-law. I’m so glad I found your blog!
It is extremely hard to make the decision in your mind and then harder to let the words come out of your mouth. I found the hardest thing was the daily second guessing the decision as I watch her get worse. The truth is the it is and was the right thing to do. It is not wishing them to be gone but realism that non can live forever and the only reason to prolong their life is so we dont have to hurt when their gone.
I know it seem wrong not to do everything possible but it not.
God bless you and your Mother
Thank you Mary. God Bless you & your Mother too. Mom went on hospice over the weekend and it was decided all A/D meds were stopped. In late stages, the meds no longer have an effect as slowing down the disease. So I don’t see the point keeping her on meds that are no longer beneficial. It is an extremely hard decision, but I’m sure I made the right one. It’s all in God’s hands now.
it is extremely hard to make the decision and even harder to let the words come out of your mouth. Yet the hardest is as the time come closer to say good buy to your Mother second guessing your decision. However, it is the right thing to do.
Hello all &. Happy New Year,
I’m sad, but somewhat relieved to report that my dear Mom, Rosemarie, passed away on Friday, Nov. 23rd, the evening after Thanksgiving. While I miss her greatly, I’m so relieved to no longer watch her decline, to no longer have panic attacks over this horrible disease, & to no longer stress over running out of money for her care. I’m happy that she has moved onto bigger & better things in heaven, that she’s reunited with my Dad & other relatives who have passed & that she’s my new guardian angel. ( So True!!) God Bless the best Mother a son could ever have asked for. And thank you for allowing me to be there when she passed over into your loving arms.
Gary
My condolences, Gary. Sounds like your mother was a loved and cherished person, and I pray that you and your family have much peace and are sustained by the good memories of her in 2013.
Beatriz
I’m reading all this and feel for evey member on here, my mum is 58 years old, yes just 58 and we are in the final stages of alz, my dad cares for my mum at home and we have very little to no support. We are at the stage where we are considering stopping the anti dementia drugs becasue I want to give my mum a little bit of dignity. This disease is so cruel, I’ve missed my mum every day for the past 5 years, but the past yaer has been so difficult I really don’t think she’s been lucid for months. I think the day I finally say goodbye will be both filled with sadness and releif, which is such a sad thing to say, my love goe’s out to you all who i know, know exactly how I feel x
I am so very sorry to hear about your mother Jane. I wish I had some wisdom to share with you. I cannot begin to imagine the moment when I have to make this decision. But then, before this, I couldn’t imagine my mother getting Alzheimer’s either. Where do you live, and is there any support group you could attend? How does your dad manage? Does he work? Can he get temporary respite, perhaps have someone take care of your mother for an hour or two so he can catch a break? These are some of the very real issues that people all over the globe are grappling with–especially with someone as young as your mother. I wish you peace!
We live in Wales, and we do have limited support from the Alz society but they can only do so much, my dad had to give up work to care for mum and in take her out as often as poss, but i work and i have a young family so it’s not as often as i’d like. just reading the post’s here and knowing we’re not alone is a help, being able to write too seems comforting, thanks J x
Jane I am sorry you and your family had to go through watching a Mother/Wife go through this. My family recently lost our Mother to Alz but she was 91 and it was not easy. I worked for a Geri Psy who said as long as the person can feed self and know when they need to potty, Alz med was of value. I realize they are very expensive and at some point you wonder are you just prolonging her torture. Hospice was very helpful to us the last year of Mothers life. If you have not called them it might be a great deal of help. Your Father my not want stranger in his house but for us the benefit out wt the negative. I will tell you another thing for my Mother Seroquel very helpful with the anger hallucinations and paranoid. I will pray for the family needs and strength. Best of luck.
Well, we decided to take my Mom off her dementia meds today. She is still walking with help and able to eat. I am, so afraid she will lose those abilities. I miss her so much. I still take care of her but it really is getting hard. I find myself crying all the time and I probably drive her crazy because I am always hugging her. I know the quality of her life is horrible but I don’t want to let her go. Anyway I know how everyone here feels.
Karen, I am so sorry you are going through this. May I ask what your medical team had to say about all of this? It might be helpful to all of us going through this to know how you came to this decision.
My Mother is 91 and in late stage of Alzheimer. She has been on hospice for 4 month. I am very fortunate that Mother has 6 children all who live within 15 miles of her. We all share equally in her care and get along. The question has come up before when she was not so far along if we should stop her heart meds. At that time she still freq would show us a glimpse of the person that makes her such a great Mother. It was decided not to do it then. Now that ugly question has raised its head again. This time she is far worse. Hospice has said they do not recommend taking heart meds away. I really don’t care what they say but, I have several questions from myself.
Am I killing her?
Am I following my will instead of God’s will?
Does it matter God can make her live without the meds or die with the meds.
What will I think and feel when she does die?
Can I watch her have chest pain and shortness of breath when I caused it by taking away her meds?
Can I live with myself knowing I allowed her to live an extra period of time wetting herself and needing fed.
Mother and I have talked about this time she did not want to be a burden to anyone, yet she is afraid to die. She was not sure she was going to heaven. Though I told her many time if she believed on Jesus name she would. She would just say I hope so.
I really don’t know what I will do but this blog has helped to hear others face the same. That this is not a selfish act on my part to want Mother’s suffering to stop. Thanks again
Mary,
I think all of us who have been or are in your position have asked ourselves similar questions. I don’t want my mother to suffer. I don’t want her to lose her dignity to this disease. I don’t want my mother to die — no one wants that. But I have thought often that to have her die suddenly from a heart attack would be more humane than the indignities that come with the late stages of this disease. There are no easy answers are there? I wish you and your siblings peace as you move forward on this journey.
Beatriz
Beatriz
Thanks for the kind words. I was once told that when your love one has Alz you will grieve daily. We grieve for the loss of them cooking whatever, the loss of them not knowing you for the 1st time and so many other things. Many people only have to grieve once we grieve frequently. I will pray that God gives you the strength you need to whatever you decide.
God Bless
Mary
I just came back from one of the many visits to my Mom’s assisted living facility. It has broken my heart almost every time I have walked through the doors. I took care of her for years before I had to make the horrific decision to place her in a facility, which almost killed me. My mom and I are very close. Today she said something very amazing to me. She said “On the outside I smile, but on the inside I’m crying…I feel like dying”. I made the choice to talk to her about something I’ve never brought up before…letting go. I told her that I knew how much she loved me and that I would be ok when she goes to heaven to be with all of our relatives who have passed. Her face lit up. I’m so tired of this long lonely road as a daughter watching my sweet mother fade away. I’m tired of crying and feeling soooo sad for her. She’s only 73 and has been cheated out of so many years of active living. Currently, she’s being treated for COPD and respiratory distress that sounds progressive. I’m going to talk to hospice the week to start asking tough questions about when to stop interventions and let the inevitable take place. I would much appreciate any reponses to my post.
Laura
Laura, tears are streaming down my face as I read your post. I know the pain that you are feeling as I am living the horrible reality of this disease with my mother, We had to put her in assisted living in Sept and I see her fading more each day. She can still walk and knows who I am but has difficulty swallowing and is wearing depends all the time now. It was almost more than I could take the other night when she almost choked at dinner and then refused to eat anymore because she was so frightened. She has a doctors appt 7/5 and I am seriously thinking about stopping her medication. I know things are only going to get worse and I cannot bear the thought of whats to come!! She justed turned 75 and feel she has no quality nor dignity left in her life. God bless you and everyone that is enduring this heartbreaking journey. I rejoice in the thought of my mother resting in the arms of Jesus and feeling safe and no longer confused.
Cindy and Laura, I’m sorry to hear about both of your mothers. I just had a conversation with someone yesterday about how it feels like I’ve been stuck in grief for years now. I’ve been thinking of something I want to post here, but haven’t had the energy to do so. But I will, soon. My mother-in-law is in the very late stages; she is like a newborn in that she must be fed, diapered and bathed. My mother is in the middle stages, and no longer has enough attention span to speak to me by phone for more than a minute. I will be going with her in a couple of weeks to relieve my sister and to try to help adjust the care plan we have right now. She fell one of the nights she was at my sister’s and though she shattered, somehow, a glass table, was unhurt. I hope that both of you have the support you need on this long journey. If others offer help — in the way of words or tasks they can do for you, please take them up on it. Sending you both a virtual hug!
Hello, both my parents have dementia. My mom is much worse. I stay with them M-F my daughter on the week-ends. So much conflict in my family right now with my sisters as to my mother’s treatment. She also has a fib and is on the usual meds for that but my sister’s think the exelon caused her a fib and want her off the exelon and blood thinners and heart meds and I feel crazy and I want to cry.
My family and I have cared for my mother in her home for five years now. She takes handful of pills for many conditions: Alzheimer’s, hypertension, a-fib, hyponatremia, hypothyroidism. She is now requiring total assistance, seems so distressed at times and stares at pictures of my deceased father. We wonder often what she is thinking. Knowing my stoic mother who raised 13 children would never want to continue to live like this, we’ve contemplated taking her off medications and allowing nature to proceed. So being conscientious children, we scheduled a visit with the PCP to ask what medications need to be continued for comfort care only. He hedged and said she needed all of them and that only family members could make that decision. How disappointing this was. We really needed an opinion. We are now faced with holding another family conference and deciding what to do. Luckily one of us is a physician, one a lawyer and so we can face this with some advanced knowledge. We will get Hospice involved. The medical community really needs to look at End of Life Issues. Such a fuss was raised over “death panels”. Having a conference with a medical provider that could provide informed and accurate opinions on how to face this and have that provider reimbursed for this time is SOOOOO necessary. While I believe that everyone should care for a dying parent, I also find it to be one of the most challenging and heart-wrenching things in life. Bless all caregivers and those they care for.
I woke up at 5:00 this morning thinking o f my Mom who is 74 and has had Alzheimer’s since age 61..have a meeting this week in regards to her meds. She has had her food pureed now for 6 months, cannot “walk” without two aides helping her, and I feel that she is really declining now. I (and my siblings) just want her to go “home” now. I feel like she passed a long time ago..and even though I will miss her..I really miss her every time I walk on that unit. She is my mom in body only. It gets harder and harder to keep going in there and yet, God is so faithful to provide the strength I need. I keep telling myself that what seems “long” in this life is really only short compared to eternity. Did I also mention that my Dad died in 2004 with ALS? That was very hard too. Both diseases..no understanding how one gets it nor any cure. Thank you for letting me ramble. My husband is a great listener, but really, no one understnds unless they have been through it. Thank you for the website. God bless those of you who are plugging on in th face of adversity.
My mother is in the final stage of Alzheimer’s…today, while trying to feed her, the food pocketing was so bad that I thought she was going to choke…and just seeing her panicked look upset me so much. This is really sad because what she was trying to eat was applesauce….she’s been on pureed food for several months. It just breaks my heart.
Sharon, I’m so sorry to hear this. I wish you much strength in the road ahead.
thank you, I really appreciate the support. This has been a long path for all of us….almost a decade….taking her car away, having live in caregivers, the traumatic move to the nursing home and selling her house and belongings of 50 years. Then, we began the subtle but permanent decline…she stopped walking in December….dramatic weight loss…..and today…even the applesauce now challenges her. Alzheimers disease is cruel and it is really the long goodbye.
Oh my gosh Sharon, I know that feeling. Taking the car away was the hardest thing with both my mother-in-law and my mother. It’s hard to say to someone that you’re taking away her independence for her own safety. How can they possibly understand that? They can’t! Cleaning out my mother-in-law’s house was brutal. I thought it would never end, and I know it was very hard for my husband to sell the house in which he grew up and where we always visited his mother. It was awful. I’m sorry. I wish I could stop this from happening to you or anyone else. I’m sending you a virtual hug!
Hola,
As a paramedic, I’ve seen a multitude of ways that we humans can die and I’ve been with many when they crossed over. My take on the whole thing is that it’s not death that is the enemy, but rather suffering, pain, and loss of dignity that are the enemy.
As a Catholic, she probably felt that her time will be when God calls her up. That philosophy does nothing for your agonizing decisions, nor does it take into account all the sophisticated medical ways we can keep people alive nowdays. So, you may be right, she would want all measures to be taken. Does she not have an Advanced Directive at the hospital? Or a Code/No Code paper signed either with her doc or at her hospital? Has the hospital or her doc never initiated this conversation with her while she was still cognitive?
It’s a tough one, for sure. I believe in quality of life over quantity of life.
Yes, a loss is a loss, and especially more profound when it’s mom. True. But, have you not already lost her? Isn’t it just the shell of her that remains? That vehicle that carried her spirit and soul and intellect around remains, but the spirit and soul and intellect have already left her. Is that not true?
Hang in there, it will resolve one way or the other. You all are VERY brave.
Best,
M
I somehow stumbled on your blog, my heart goes out to you. You are one of the many “Family Heroes” out there.
Although my mother never was an Alzheimers patient, I did let her go. What made it easier was she was 97 and I knew even if we were able to lick the organ infections that were spiraling her into sepsis, she would NEVER get out of bed again. I also knew that would be intolerable for her.
I have an aunt in very end-stage Alzhiemers and I often wonder why the family continues with all the meds. Not the Alzhiemers meds so much, but the antihypertensives etc. Wouldn’t a heart attack be a blessing? I want to ask but don’t. . .
Do you know your mom’s wishes? Did she ever talk about that?
To answer your question, I think you will unequivocally know when the time has come.
I’m holding nothing but good thought for you and your mom and look forward to reading your blog regularly.
All the best!
Marilyn
Paramedic
Marilyn, you probably found the blog because of the El Paso Marathon, right? Thanks for writing. I don’t know my mom’s wishes, but she has been a staunch catholic, and I wonder if that means that she would want us to help her hold on to her life until the bitter end. I don’t know. That would not be my wish for my life, but I do try to respect the wishes and thoughts of others. I often think that losing my mother to something like a heart attack would be easier than this journey, but that may be folly. In the end, a loss is a loss, right? Especially of a mother. Thank you for your good wishes!
For me it was simple. My father was clearly suffering with Alzheimer’s although it was not so advanced that he was near death. The meds didn’t do enough to justify them for my Dad. It was the hardest thing I did in my life, but partly because he had articulated his wishes so many times, we respected his desires and didn’t prolong his suffering with life-extending medications and surgeries that would have allowed him to hang on a little longer. Everyone should talk to their parents about this. There is no question my actions hastened his death and I am so glad he had let it be known he didn’t want to be kept alive if helpless. Good luck with your Mom.
Hi, I saw the story on you nad youf family on CNN and wanted to drop you a line–my mom has Alzheimer’s and my husband is mentally ill. To top that off, before my husband’s mental illness manifested, we had adopted a special needs daughter. So when the article on CNN quoted you as thinking that you are “drowning in Alzheimer’s”, I knew what you were feeling. It’s not all Alzheimer’s at our place, but some days I just long to talk to someone with “normal” thinking…….I know that you (and I) will never regret taking care of our moms (and mothers in law, too) but it’s so hard……
Carol, you have your hands full! I cannot begin to imagine how you juggle the needs of those around you and take care of yourself. I’ll have to check out your blog and see how you deal with all of it. It amazes me that we humans have such resilience. I hope you’re taking care of yourself, too.
Thank you for creating and maintaining your blog. Your ability and willingness to share your experiences with your mother’s dementia are deeply appreciated. My mother, my amazing-brilliant-change the world for the better mother, has just been diagnosed with Alzheimers and begun Aricept. Reading through your posts was very helpful. I’ve bookmarked your site as I suspect I’ll be coming back often. Very best to you all. –kwch
Kwch–thank you for reading. I’m so sorry to hear about your mother’s diagnosis. Make sure you have support for you as you begin this journey. Find others near you who can listen to you. It gets more important as the disease progresses. I hate Alzheimer’s but one thing it has done is make me appreciate my mother and all she did for me and others in her life. She was a wonderful volunteer for years, and the disease can’t erase that. Good luck with your mom!