I am watching my mother fade away and my emotions are conflicting. Any advice?

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I am watching my mother fade away and my emotions are conflicting. Any advice?

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I feel the same about my dad. He lives with me now and taking care of him is very draining. We can’t really converse since he’s got very advanced dementia and he can only remember things for 5 minutes or less. He asks me the same questions over and over to try making some kind of conversation so it’s a lot like talking to a parrot. He gets anxious if I’m not constantly smiling and it’s hard when I have so many other stressful situations I’m dealing with other than him. Every morning when I get up and check him on the monitor I’m disappointed when I see him move. I keep praying he will pass peacefully in his sleep and then I feel horrible guilt for wishing this! You are not alone in these feelings. In my confusion about this unexpected emotion I have done some reading and found it’s very common for those taking care if parents with this condition. Hang in there!

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YOU ARE NOT ALONE!!! I too feel that way. I feel guilty for hoping my mother doesn't wake in the morning. I love her regardless of what this disease has done to her. Do I get angry, frustrated, tired of feeling like a waitress and nanny? YES, it is normal to feel that way. It's okay to miss your mom, it's okay to feel frustrated. I joined this group because I too needed the comfort knowing that others were and are going through the same things, sometimes worse, sometimes better, that I am experiencing. I have used tips that I have been given or read about in this forum. Some work, some don't, but the main thing to remember is that you are not alone. We are not there beside you in person, but we offer moral support, a hug and confirmation that you are never alone.
There are many groups out there that you can physically attend. Seek out a counselor in your area that specializes in this arena. Go out to https://www.alzconnected.org/solutions.aspx or alz.org they offer so many options for assistance, not only for your mom, but for you, as well.
Remember, this is a team effort and as you read the responses to your question, know a hug is being sent with each and every one!!!!
You will get through this and you will be stronger for it. : )

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Your feelings are absolutely normal! Take heart in reading all these posts that share your experience.

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You're not alone. Everything you're feeling is normal in my eyes. I feel like this disease robs you twice as you watch them die mentally and then physically. Everyday I pray that God takes my Mom peacefully. It's hard to watch and even harder when she asks God to take her. In the midst of it all I still find beauty in the brokenness. My thoughts and prayers are with you.

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My mother was diagnosed with metastatic lung cancer 11 years ago. She'd been given a year to live but went five weeks later, very quickly and very peacefully. I did not like to see her fade in front of my eyes. I know she is with my father, who died three years earlier, and they're dancing in Heaven somewhere

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They say playing records that were popular during during an Alzheimer patient’s teenage years helps stimulate and unfreeze other pleasurable memories. Your mom would have been 16 in 1950 and if you have a record player it would be a nice hobby for you to find records popular during that time. YouTube has lots of recordings to help you get started:

https://youtu.be/_RCRZxIqMZ8

You can just play it in the background and experiment with different years!

You’re a brave and good person and music will be good for your soul as well!

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Actually, she listens to the current country music video channels almost daily - she loves country music (especially Blake Sheldon!). I grew up with country music in our home and I think she relates to the time period where the family was happy (with my stepdad) more than when she was married to my biological father who was an abusive alcoholic.

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You are not alone, this happens to everyone. If your mom is not
on Hospice she needs to be; there will be help for you also
through them. Keep talking to mom as her hearing is the last
to disappear. Good luck and get yourself some support.

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When I visit my mother with advanced dementia in a senior residence I feel the same way. She was so vital and creative and a doer, and now she needs help doing everything. She no longer communicates, can't feed herself, needs help from 2 aides to go from her bed to a wheel chair (she can't walk). Sometimes after visiting her I go to the bathroom at the facility and cry. I hope that she is not aware of her own state, that she is "happy" as much as one can be in that state and not in pain. The only thing that keeps me going is an occasional spark of her personality coming through. She gives me a smile and kiss occasionally. I feel that I have to be there for her until the end, she's totally helpless. It's not easy. We have to be strong. I feel that I have become a better person through this, more tolerant and understanding of people with mental disabilities and helpless people. That's one of the things that keeps me going. I think it is normal to feel sad through this "long good-bye." But if it becomes too much, get grief counseling.

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I also felt like I became a better person through this journey. I was so task oriented at the beginning and now I am having trouble getting anything done. But I also don't care so much about little setbacks. Dad needed a lot of help at the end but even when he didn't recognize me, he lit up when I came into his room and I will always treasure that memory. I did the best I could for him like he did for me. I was there. I'm so glad that I could be.

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YOU ARE NOT ALONE!! It's ok to want her to pass for both her betterment and yours. I will caution you, however, be careful mentioning your feelings to others (except here on this website) b/c many won't understand and will be critical and may just turn you in to DSS (Dept of Social Services....the Gestapo of families in America).
I had that happen to me when actually talking directly with DSS, as my mother was receiving some aid county aid that went thru DSS. I was telling the woman (who I had been working with for well over 5 years & thought I had a good relationship) that mom was wasting away and her vascular dementia was getting worse....at that point mom was pretty much bed bound. I recall I was even crying at the time of my comments, which were expressing essentially that 'it was time for mom to pass b/f it got worse, as I didn't want to see her suffer with a slow lingering death (mom was diabetic, frail, small, had lost her left leg some 6 years earlier from diabetes). I told her that her food/water intake had slowed down and I was watching her urine output and might need to have her be taken via ambulance to the hospital but was going to wait the rest of the day and make that decision b/c it not a small matter to set all this in motion. DO YOU KNOW WHAT THAT BITCH DID??!! She spoke w/her supervisor and then actually put in a complaint charging ELDER ABUSE. Now, you want to talk about the crap they put you through on their baseless, draconian system that goes on for weeks-to-months invading your home, forcing you to answer all their 'we caught you' questions/surveillance. Ofcourse, in the end it all went away and they were so so wrong and it's certainly helped me to see just who/what this government system is all about! That system is linked in with your local sheriff's department and if you refuse to comply with their invasion, they can literally have cops come to your home and arrest you. STAY AWAY FROM the NAZI DSS. That's my story! How dare they after having taken care of BOTH my parents for well over 12 years, day-in, day-out! I'd do it again b/c I had wonderful parents and they deserved my care....but don't you dare question my heart! That's what I say to you dear lady, it's OK to feel the way you feel and it's OK to want you dear mother to pass on, as nature intended. Our world now has been turned upside down to murder of MILLIONS of unborn and many now, born alive children who are SUPPOSE to live out their lives while in many instances, families are criticized for being ready for their loved ones to pass in quiet and peace. GIVE YOURSELF PERMISSION to know it's OK....you know deep down it is ok, and natural. Try to take care of yourself, it's not easy physically and certainly not easy emotionally. God Bless!! Rebecca

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Social Services is a joke; they're all @ssholes

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You are not alone in your conflicted anguish. In my opinion, caregivers of patients with dementia experience death twice: the death of your loved one's soul as well as the physical death. So cruelly you are hit twice. Have you reached out to the Alzheimer's Association to find support groups in your area? Local hospitals, memory care units also sponsor caregiver groups. Churches too. If you're not a group person, individual counseling is also an option. My heart goes out to you.

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Kirahfaye,

You are not alone! I would say that the roller coaster of emotions is normal and to be expected. I think the best you can do is find some time for respite; to take a break and catch your breath, if you can. It definitely helps to have someone you can turn to, to talk, vent, scream or do whatever you need to release the anxiety that builds.

Sending you prayers and hugs.

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Hi Kirahfaye,
You are not alone in this journey and you are not a bad person for feeling the way you do. I am taking care of my mom, (96) with frontal lobal dementia. She had a bad fall in early July of this year and hurt her back. She has not been the same since. There were no broken bones and no concussion, just badly bruised muscles, not even a bruise on her back, but in constant pain. She is now on hospice care, but still in her home, which I have been living with her since 2014 after my dad passed away from alzheimers. They say it was dementia, but his dementia not the same as moms. I am slowly watching her wither away, not wanting to eat any food, and making all kinds of noises because of the pain in her back. They gave me morphine to give her for her pain. In the beginning it was only making her sleep without her having any strength to get out of bed, but now she can get out of bed and walk to the bathroom (with her walker and under supervision). She is constantly talking to people when she is in bed, imagines kids under her bed and babies that need to be tended to. She wants to go home. I too feel that she is not the mom I grew up with who was always there as a buffer between us girls and dad. I miss that mom. I also would like her suffering to end and for her to finally be at peace. But she has a strong mind and a strong body. She has no other diseases other than being hard of hearing and her dementia. Your words brought tears to my eyes, because I know it is so hard to want them to go and yet not. I am in the same place you are. I wish you love and peace and hugs and prayers and to let you know you are not alone. I am thankful for this forum for it gives me an outlet and listen to others in my situation.

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My mom passed 11 years ago, after taking care of her(with my dad) for 2 and 1/2 yrs. She had alzheimers and was essentially non-verbal. As time went on, it was hard to see the blessing of her living this way one more day, and more like a prison sentence for us and for her. She couldn't remember who I was or why I was there. I cried so many tears before she finally passed that at the end, there were no more tears to be shed, and actually, a tremendous amount of joy that she was freed of this sentence. I did want her to have peace, but that is only in the end.
At the end, when she was in the mood to eat, we ate only ice cream. She loved it and so did I.

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Your words brought tears to my eyes and the last sentence brought a smile to my lips. My mom always tells the story of being a teenager working in an ice cream shop where she was allowed to each as much as she wanted and quickly came to dislike it. I think my mom and I would just sit and each Little Debbie treats because she loves them. :)

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You are normal and definitely not alone.

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I can remember feeling desperately with both my mother and my father that I wasn't ready to lose them, praying that I wouldn't lose them. And then one day, thinking that I was ready, that I could handle it. I always felt that God was generous to me, giving me a chance to prepare. I would not have wanted either one to suffer to the extent their respective diseases could possibly take them. Giving up control and living just for the day was the only way we could say goodbye. It wasn't awful. It just was.

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I know exactly how you feel. My beloved husband passed away one year ago. He had dementia also. He never got like so many and was still loving and kind even though he could not communicate except with me. I grieved as I watched him go away right before my eyes. We both had a strong faith in God. I prayed constantly for God's mercy, that He would not allow him to suffer, and instead take him gently home where I will again see him when God takes me. God honored that prayer. I find comfort every day knowing he is no longer suffering and is at home with the Lord. God will give you strength as you walk this walk. God bless you.

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As I started reading the first sentence, I thought, I don't remember posting this. It's exactly where I am at these days. Although my mom is not suffering from ALZ. My mom has been declining slowly over the last four years, but this year has had a severe sudden decline. She is also 84 (85 in December). I felt much the same way when the decline and steady inability to do anything for herself became prevelant.

Some days, I just wish that she would pass quietly. Other days, I have hopes that she will improve and be able to get back to where she used to be. She expresses that she wants to walk again. Some days I think it can happen. Other days, I'm almost certain it won't. It's hard to reconcile this in my mind.

My mom was walking, driving, cooking for herself, etc. and had a mitral clip put in to stop a leaky heart valve. The doctors opted to do this procedure instead of open heart due to her age. The clip failed due to her valve being too fragile. She went home after a few days from the procedure. Then was having diarhea and went back to the hospital. This is when everything started going downhill. She now has tremendous pain, which one doc says is due to infection in her spine. The infection in the spine was caused by an infection in her blood which was caused by an infection in her heart. The antibiotics caused her to have C-Diff.

It just seems like all the cards are stacked against her now. She keeps asking me, I wonder what the surgeon is going to do about the bad clip. I'm not sure there's anything that CAN be done at this point. No one is going to touch her to do open heart NOW.

I want to just bring her home and let her go on hospice, but then there are days I go and visit where she's looking and sounding much better.

This is hard. You are not alone. We don't like seeing our loved ones in pain or losing who they were. I totally understand the roller coaster. <<< Hugs to you >>>

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Maybe you could cautiously have hope? My dad had terrible infections (gangrene) in his legs, and he suffered greatly for about a year. He was in terrible pain, and sometimes wanted to die, but he'd get over it and fight.
I was told by the smirking social workers at his rehab/nursing home "Your father is never leaving here." I shot back, "You don't know my father!"
It took a lot to get the infections under control (yes, he had chromic c-diff too - awful!). He lost both legs and was on lots of antibiotics.
He actually got prosthetics although he mostly uses a wheel chair or scooter to get around. But he's slightly younger than your mom and has 3 good years since everyone was so certain he was going to die. Lots of outings with family, many new girlfriends (oh, my!), even took himself on a vacation! Remember, anything is possible.
I remember fighting with the 'rehab' to get his pain under control, and you may have to as well. Especially if they decide she has limited time left - no need for senseless suffering.
I had to promise myself during that hard period that if he did die, I'd try to remember that I did all I could for him. You need to be easy on yourself too. It's exhausting and stressful, and sometimes we don't realize how much we aren't caring for or being kind to ourselves.
Best of luck to you & your mom, and sending hugs for you both!

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No advice at all. Just empathy. Am going through the same thing with my husband. So very sad to watch. Really painful!!!!!!!!!!!!!!!

Same conflicting emotions--and guilt.

Sending a hug!

Sue

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I'm so very sorry, Salisbury. I think it must be even harder when it is your soulmate than even a parent or family member, except perhaps a child... My mom was my stepdad's caregiver for 5 years after the strokes and Parkinson's diagnosis. That strain and then being alone without him for 6 years (she refused to leave their home) is probably a contributing factor to what she is going through now. I'm grateful she still remembers him and several friends from back home. However she has no interest in making new friends up here.

Hugs back your way!

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You are definitely not alone, I took care of my 91 yo mom who had Alzheimer's & she had lots of moments of agitation, paranoia,hallucinations, irritability & anger. Please check into both of your needs for evaluation of depression, etc. Also respite care so you can have sometime on your own. Depending on the age of your daughter, remind her of the good times with her grandmother before this disease took her mind. if she doesn't have memories of good times with her, show her through family photos how her grandmother was very loving & when she's old enough to understand, educate her about Alzheimer's.

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kirahfaye, I am sure this is experienced by many and quite normal. Like Salisbury, I am going through this with my husband however he is losing the fight to emphysema. The only similarity with ALZ is that he has had a couple of strokes and his short-term memory doesn't work well.

None of us want our loved ones to suffer and if we are honest we know that it is likely to get worse as time goes by.

Many hugs to you and I wish you courage for the future.

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Kirahfaye, I totally understand. My mom went to be with Jesus on May 6. It is the hardest thing in the world to watch them die a little bit each day. It is like a grieving process that doesn't end. I wanted mom to not be in pain anymore and be better. I prayed for God to take her home and He finally did on May 6. She too, was 85 years old and had been sick for years. I do miss her so much now - my mom the way she was when she was healthy. It still hurts my heart when I remember all of the stuff that she/we went through. You are just a loving caring daughter that does not want to see her mom suffer. I pray the peace of God for you and your mom. Talk to her doctors about keeping her comfortable and take care of yourself.

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Thank you. Your words are comforting.

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This is exactly how I felt for a year and a half while my mom was declining and in and out of end of life symptoms. My mom passed on over 3 yrs. ago and I still miss her. However, I feel that she is safe now and that the cares and pain of this world can no longer get her. It helps me to think of the time before her decline, which was actually a short part of her 93 years. I try to not think so much of the end. There are memories of her garden, vacations, holidays, her great cheesecake, etc. I try to pull memories of days before up, whenever those of those last hard days hit me. Looking at old photos helped me right before she passed away. I framed some lovely ones and put them on her dresser where they were right in her sight from bed the last months she was bedridden. Seeing mom smiling and laughing in vacation pictures really helped me.

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Unfortunately, I don't have an answer for you. BUT, I can DEFINITELY relate to what you're going through AND ALL OF THE emotions and thoughts you're having, because I'm going through the VERY SAME THING you are!!! And, although you didn't mention it, I also DON'T get ANY support, emotional or otherwise, from my brother (her only other child).

I WISH I had words of wisdom, or comfort, to lend you, BUT, PLEASE find yourself a local support group where others, like you, are going through the very same thing! It'll help talking/sharing with others who're going through it, too, and perhaps you'll even discover other resources that will help!!! Hang in there.... I KNOW EXACTLY where you're coming from!!!

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I also understand this process all too well as I see my mom (94) declining more quickly now than the slow, steady, forgetfulness that has been happening for the past few years. The toughest part of losing a parent this way is losing the ability to reflect on the past pleasant shared memories (family holidays, special moments, funny stories), because they are now irretrievable to her. We have to develop a “new” process to engage with a loved one, which is to speak slowly and clearly and be patient enough to answer the same question over and over. It’s the hardest thing to realize that the person who has cared for and nurtured you since you were born is now lost in the tangles of her own mind. Wishing you peace and strength to get through this.

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What you are feeling is perfectly normal. You don’t want her to suffer, you want her set free peacefully. She has been blessed with you! The hard part is feeling helpless for both your mother and yourself. I would definitely call in Hospice. They understand the dying process so well and know how to make sure she’s comfortable physically and mentally. They will take care of both you and your dear mother. Her Dr. should ask Hospice to give Comfort Care and it will be covered by insurance.
God give you peace, comfort and all the hugs that you need.

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Thank you for your kind words. At this point my mother would not be considered "dying". She gets around well enough on her own, can dress herself (even if it is in all her old clothes that are about 3 sizes too big), can feed herself, etc. It's just that over the past 2 years since she moved up here she's become so frail and "tiny". She went from taking long walks on her own to holding onto the stair rails with both hands just to shuffle to the car. She's gone from a strong woman, physically and emotionally, to someone who has no confidence in any of her abilities, but she still insists on trying (even when she causes more work for me than she helps with).

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I'm also watching as my wife fades away. She made it clear she did not want to live past Stage @ AZ, and I said I would help her die if I could, but as you no doubt know, my taking an active role bringing about her death would be murder. So, she lives on. I am not taking care of her. She is in a nice memory care place. But I do go see her almost every day, often spending the night. I have her medical power of attorney and I've instructed her doctor not only to not resuscitate, like a common DNR, but not to treat infections, like UTIs. This may help her along her way. I do have to say that I scoffed at writers who said she would become delightful, like a child, and my love for her would deepen as we go through this stinking mess together. But they were right. She is not who she used to be, and I miss that person terribly, but I love her as she is.

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I agree on the DNR but do not on not treating infections. I couldn't allow my Mom to be in pain and UTIs are very painful! If the good Lord is going to take her, let it not be in a painful manner. I'm sorry, but it just seems cruel. I cared for my Mom for 8 years.

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I'm telling you to walk away!! I took the best care of
my Mom. Did all I could do but yes, at 94, glad to
see her go. She loved being sick, had money, no
real need for nursing home. She had so much but
she called ambulance like a taxi!! She had me convinced
she was broke but NO she was not. Sister & her crew
got most of her money!!

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I am so sorry that you went through that. My mother isn't like that at all. She was and is still loving. She doesn't like being forgetful and she wants to be useful (even though that is getting more difficult). I will not walk away from her.

I do hope you find some peace somehow.

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Dear Kirahfaye,
You are definitely not alone. My mother did the best she could to raise us. Unfortunately, my 4 siblings have chosen to not forgive her. But, because I am a compassionate and empathic soul, I couldn't just leave her to deteriorate alone. It has happened so quickly. So, after reading the book "Final Gifts", I began to understand what was happening to my mom. As I persevered, our relationship has completely changed to a very loving relationship. I do call it a gift. I must say though, if I hadn't been doing work on myself these past 20 years, I wouldn't be able to have any kind of relationship with her now. I am so grateful.
Sending you love and peace, my friend.
BTW... I still wish she would slip into the night so she doesn't need to suffer anymore.
Bless you!

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Beautiful heartfelt post!

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I think as loved ones of dementia patients our quest is extremely painful. No doubt our loved ones are suffering a pain we, hopefully, will never know. I am facing a situation of shutting off treatment for my brother. He is in advanced dementia stages, stage 4 renal failure, clogged aorta, chronic leg wounds and a number of other issues. He is at the point where his kidneys will not produce enough blood or iron. He was getting blood transfusions about every 6 months or so along with iron infusions. This has advanced to almost monthly. However, he still wants to go go go and can carry on a conversation if you can catch him awake. The nursing home suggested I contact hospice because of the time frame between transfusions. The big question is, do I keep him alive with blood and iron transfusions knowing he will never get better - only decline, or let nature take its course? I have nightmares over this and the fact I have to make this decision alone. I get zero support from his kids or my sibling.
It really stinks that our roles reverse and we have to make these decisions. I do not think you are selfish, mean or anything but a loving daughter who is caught between a rock and a hard place. Hang in there...

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Please don't feel bad for wanting your Mom to be peaceful and no longer scared. Imagine being somewhere that no one and nothing is familiar...except when family visits. My Mom, also 84, passed away this past January. She was in an assisted living memory care, with 5 other residents in a residential home. During the last few months, she called for her Mama and "please help me" over and over. She told the caregivers her Mama was in her room with her. It frightened the caregivers. Sometimes when I went to see her she would start crying and hold her arms up to me and say "oh Mama". I would answer with "Mom, you are my Mama" and she'd say "well, I know that". I loved grounding her for a few hours every time I went to see her. We watched movies she used to like, we watched Lawrence Welk, we went thru the photo album I made for her. When she asked to call her Mama, her Father, her brother, I'd simply say we should wait till they get home from work or let's call after dinner and 2 minutes later it was forgotten. But she was reassured that they were fine. She never really forgot her kids...we were lucky.
This is such a devastating and unfair (to all) disease. In the last two months Mom seemed to cough a lot when eating or drinking, she started aspirating her food and eventually had a week hospital stay, where she passed away. Dementia/Alzheimer's robs its victims of everything!
You never really realize what you yourself are going through...till after she's gone. Although I miss my Mom the way she was years previous and we even had some pretty good days in her last few years...my shoulders are lighter and I'm certainly not so stressed and worried about her.
My thoughts and prayers are with you. Stay strong and know that nobody knows your Mom, like you.

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In the midst of this horrible disease, enjoy those good days and yes, I know that they're fewer and fewer. Prayers sent to you. Big Hugs ((( ))).

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You are not alone. Many of us are going through the same things. I know in my case it has been the longest two years of my life. My mother has seen both a serious mental and physical decline. My dad passed away two years ago. My mother wants to be with him ,but won’t let go. She has had four serious falls. Earlier in the summer she broke a hip and had surgery. She spent the summer in rehab and went home two weeks ago. Those two weeks have been hell. She had to have home dare 24/7. She kicked them out after four days. That just made more work for me. Then she fell again this week. She won’t listen to reason either having help or going to assisted living. We have multiple agencies working with us because she is endangering herself and doesn’t realize it. I know she will fall again. I can only hope she doesn’t break something. In the meantime I keep working toward some solution to get her the help she needs. There have been so many times I have started to walk away. APS has not been any help at all except to make veiled threats. The VNA has been very helpful. When I go to bed tonight I will think to myself please let her go in her sleep.

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I am watching my mother fade away and my emotions are conflicting. Any advice?

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