Bringing Mom Back From Dementia

She is pretty healthy for the most part. She does not drink enough fluids. She hates water and the only fluid she will take is tea. I tried to encourage her but I am tired too! She does have a good appetite though. I am on an emotional roller coaster ride. My husband is not emotionally supportive and probably because it has taken a lot from our lives and what can I do. These are the hard times and you need support from your spouse. I am the only child and my older brother lives out of state and my children have a lot with their family. I only pray I can get through this and I make the right choices and yes I will probably have guilt and I just hope it is short lived.

Hang In There to everyone going through this and God Bless! My 78 year old mother has severe dementia. During her time in hospital she refused to eat or drink so was not going to survive much longer, we were told she had 48 hours to live. Unfortunately, she was returned to the care home where they have spent many hours cajoling her to take Complan. I am angry that the care home staff did not allow her to slip away peacefully. I am angry that last week I said goodbye to her but there will be no funeral.

It is a living hell. Have you tried calling an Hospice Organization to see if they offer any Social Workers that may be able to offer you support during these very difficult times. They are a very companionate group. And may be able to give you information and even some time for yourself if your the primary caregiver. They were very helpful to me in a similar compasity. I understand very well the experiences you may go through, as I have been in a similar situation not only with one person. And at that point I would feel just as angry and frustrated.

If there is a God do you think he will listen your selfish heart to aliviate not your moms situation but your own inability to deal with her situation because it has become a shame and a burden in your life? We selfish creatures think its only about our own perspective. What if instead of praying for her death, you pray for her soul to be at peace to be forgiven by God and you to forgive her. I never thought I would say this, but, I wish she would go already. Rid herself of these daily struggles and burdens to her and everyone around her. This is NOT who she wanted to become. This is NOT my mother.

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I guess I too, like Nancy, pray for the end. When will it be? She has lost most of her functions. She constantly asks why this strange man is following her. Her brain is mush. She is aggressive and mean. This is not how my mother wanted to live her life. She has been very vocal about her fears of this disease even before diagnosis and has openly said if this were to ever happen to her, let her GO. My sister is tired.

Dementia: Why putting my parents in a home will haunt me forever

My father is tired. I want to run far away and never look back. But then I also want to be there for her till the end. But then I want to remove myself from this horrible situation.

Alzheimer’s is a Dark, Bottomless Pit

I feel crazy, just like my mom. I am tired and exhausted. And thank you for allowing me to express my own. I could not have expressed my feelings, identical to yours any better!! Caregiver live-in , to my 76 year old mom with Dementia and Copd. Thanks so much for sharing and saying the things that are hard to say.

There is no way my mom would want to live like she is not knowing her family and needing complete care. We talked about this years ago. I am beside myself dealing with the memory care staff that calls her cute. She was never cute — she was a confident woman who very much loved her family.

They act like they know her better than I do. They only know her ill…. I feel so much of what you shared here — — except the hate. She too would not want to live like this, but we have no choice. She has been transferred to a behavioral hospital to get her meds adjusted — they keep adjusting and it lasts for a day or so and then here we go again. Once it sticks she will return to the nursing home where we finally had to make the horrible decision to take her a couple of months ago. Thankfully so far she has not realized where she is it seems.

I use the excuse that I have to let my puppy out which is true , but not necessarily right then. We pray daily that there will be a cure or some kind of help for this awful disease. Bless all of you that are there for your parent. I love my mom very, very much and it breaks my heart to see her changing the way she is due to this incurable illness. We sit and talk to her about dementia but she refuses to believe there is anything wrong.

She can no longer be left alone at night, so my sister and I rotate weeks and thankful for our caregiver that comes during the day. Just like most of you, I find myself talking to God and let him know we love her very much and to please keep her painless and peaceful. Thank you everyone for your postings you are a tremendous amount of help in preparing for the hard times ahead. I know our family is not alone and will continue to reach out to you all.

Thank you Gloria — — this is exactly where we are with my mom…maybe a little further. She is not talking to dolls, rocking them and trying to feed them. My dad wants to keep her home with him as long as he can and refuses to have someone come in to sit with her to give him a break. He is 81 and mom is Dad is not in the best of health — so I worry about him as well. But the majority of the time, she is in another world and has no idea who we are. Sometimes she gets angry and we try to keep that under control. Sometimes my playing the piano will calm her, other times she wants nothing to do with me.

I try to change the subject and sometimes that is helpful as well. It is helpful to know you are not the only one dealing with this as sad as that is. So no matter how difficult our times are, we still have to trust that God is in control. I understand how you feel. I wonder when the time comes will I mourn his passing? It seems like he is already gone to me. It is so hard to understand what we are going thru as children of a Dementia parent. You are filled with so many emotions.. Before putting my mom into. She hated me and my kids. We cared for her the best we could for three years….

I sometimes resent her because I lost my youngest daughters years I had no support from my siblings…They blamed me. Now the time has come and it seems like the end…She has given up and I am having trouble dealing with seeing her like this. I am filled with guilt over not being there. I put her in a HM near my brother so he could visit but he always has an excuse. I have three kids,he has none and is on third marriage…. The thought of going to the nursing home puts me in a panic…I have anxiety over it. I cared for her for three years. Now its my bros turn.

What do I do? The thought of going there makes me faint. I love my mom but want to remember years ago,not the past years with this disease…and even now. I know I have to take care of myself for my kids. I am useless when over whelmed and full of anxiety. I also have a dad that has dementia. He is 91 and his dementia is getting worse every day. I wish i could say that all he has is dementia but not true. He has diabetes, vascular disease, Congestive Heart Failure, Ulcers that turned into gangrene and infection.

He was so healthy up until He was still able to stay by himself when we were at work. But I had to fix breakfast, lunch and dinner and he did really good for 2 years and then in June, things started happening along with his dementia. I feel so bad for him…He also is hard of hearing. Its been a nightmare for me. Thank God for my husband who supports me with my Dad and tries to help when he can.

He never calls and never came to visit. He is going to regret it. I thank God you have taken care of me. But now its too hard to take care of him and the doctors said he should go into a nursing home to eventually pass away. I would have to hire 3 caregivers. He has gotten louder and louder and yells a lot. My husband and I would never get any sleep anymore.

I feel so bad for him and so guilty. I love him so much and going to miss him. I know its getting close. Its so sad to watch him. He says he is not ready to die yet which makes it harder. We all have hard choices to make with our parents. Yes dear friend I can observe the agony and the pain that you are going through. My mother had Alzeimher s whcih was a terrible experience for me. I kept her and managed her. Being a doctor by proffession but the hopes gradually diminished and I knew the end that devastated me from within. Dear friend every time watching her made me miserable as I knew that one fine day there is an end to the road for her.

I can understand your apprehension as to what next and I can express it that the end has to come either today or the next day. Actually taking care for such a patient is a Herulean task and the worst is that no cure has been deviced yet. I prayed for her with tears but it didnt work. She was previously very healthy best mom ever! Why would God do this? I am 27 and have no career, no life, no friends, no children no husband and all I can do Is be mad about why my mother was taken so early when she was perfectly healthy but this ok lady is kicking.?

Kristina, Thank you so much for coming to my blog and for the comment. I am sending good thoughts your way…caregiving is such a difficult experience. I hope you have people to talk to and can vent your feelings. Losing your mom so suddenly and now having to care for her mother — I understand how you feel that is so unfair.

Nothing about this terrible disease is fair. I was about your age when my sister and niece were tragically killed in a car accident. My sister was age 40 and my niece was only I can understand you questioning g why your Mom died so young, and you feel that you have no life. Let me reassure you that you do have a life! The situation with your grandmother is temporary. Yes, you are still young and there is plenty of life left … Take comfort that everything that you love about your sweet mother is hidden or inherent in your grandmother.

I loved my grandmother and I now care for my 95 y o Mom. It might help you to either talk to a therapist or a social worker. You are dealing with some anger that your Mom is now gone, leaving you to be the caregiver. There are resentment feelings, which I understand. There really are people who are … And I bet that some of your Moms friends would offer you their support if you will reach out to them. We all need people who care in our lives. Please reach out to some professionals and trust me; you will have friends, and many people do care!

Reach out for the help and blog about it. Reach out for a professional to help you cope with your feelings. But last year, she fell in the bathroom and broke her hip and our lives have changed ever since. Even though her surgery was successful, mom had lost all motivation to get back on her feet again. Her physiotherapy was and still is being marred by her progressing dementia. She is basically bed-ridden now.

Now she is completely dependent on us for everything. Recently, she has stopped opening her eyes. She keeps her eyes closed even while eating and keeps sleeping most of the time. Like some of you, I feel confused about what to pray for. I still pray for her to be at peace but silently wish for God to ease her misery and call her peacefully. Please pray for her…. Benzer, the signs your mother is exhibiting sleeping all the time, eating with eyes closed, etc.. My grandmother was like that a few before she passed away.

All you can do is pray that she die a peaceful and happy death. If you are Catholic, call a priest to give her last rites. Dear Nancy My mum died last year after 7 years of living with Lewybodies dementia. I cared for her all that time and was terrified by my anger and hardness on occasions, although like some of the people above laughed and loved her as well. I have been tormented with guilt since about the times when I was beside myself with exhaustion and was impatient and cross.

All those who have written their deepest dark thoughts and who expeienced exactly the same challenges as me have been a tremendous support and I am so grateful for their honesty. I genuinely thought it was only me who wished my mother would die peacefully in her sleep. Mum had a lovely quiet and peaceful death and 8 months later I can talk to her in my head as I feel now she is whole again and with God.

I know she would absolutely forgive me and I hope other people will know the same. Thank you Nancy for letting us all tell it like it is for us. Bless you and all who have written! As caregivers we have all been in that situation — I understand completely. Sending good thoughts your way and do stay in touch. The healing process takes a very, very long time…. I know my friends are sick and tired of hearing me complain. My husband, son, and daughter are also tired of listening to my daily problems involving my aging parents.

She no longer knows me or my siblings, can hardly see, and needs care for every task, from being fed, clothed, bathed, put to bed, etc. My Dad was her caregiver for the last few years, but now he, too, has developed dementia and heart problems among other things. He yells at my Mom, stomps his feet and refuses to eat what the caregiver cooks, he verbally abuses the caregivers two have quit already and the third, after only one week, is complaining about his abusive behavior.

I order their groceries, pay their bills, fill their respective pill boxes for the caregivers, and receive almost daily phone calls from either my sister or a caregiver about what is going on in the house usually bad news. My Mom has been sick and in and out of rehab facilities since , mostly from falls, although now she is in a wheelchair. My Dad has been hospitalized five times since mid-April. Like the original comment, I find myself praying, not for a cure, but for God to take them.

I find myself losing compassion and gaining resentment. Then, of course, I feel guilty for having those thoughts. I want to help when I can, but this has completely taken over my life and is negatively affecting every aspect of my life — my marriage, my relationship with my children, my social life, and my job have suffered. Oh Liz, I so feel for you and send you my best thoughts.

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It really would be helpful for YOUR own wellbeing. Hang in there and feel free to check in when you need to do so. You can connect with me personally at nwurtzel yahoo. Please take care of yourself…if someone has not caregiven they really do not understand so look elsewhere for support. Sending you a hug. Hey everyone, I need help. Please please do reply and tell me what I am doing wrong and how am I suppose to cope. I am turning into such a mean person myself. I say mean things to her when she does something wrong.

I am always frustrated. I feel no compassion, and my mom was my best friend. So please do tell me if I am the only one who is this angry. Instead of being angry at Demetria or the disease itself I am angry at her. SD — I understand so well what you are going through. My mom was my best friend, yet, as her primary only caregiver, I find myself frustrated and angry and exhausted.

My mom does some crazy stuff, and it used to really bother me, but the truth is that most people realize that you are caring for someone with diminished capacity and are quite understanding. What does matter is helping my mom enjoy, to whatever capacity she can, the end of her life. Not an easy task, as she was horribly abused as a child and that is the time period she is living in. But that is what matters.

What you are experiencing is normal for a caregiver. Hang in there, get breaks when you can, and know you are not alone. Thanks for both of your comments. I do read every comment I receive and your feedback is most appreciated. I can really relate to what you are going through with your own mom. Thanks for sharing and for your good advice. It does help to know we are not alone in the caregiving journey.

Thinking of you and please know that others have felt the same way you do. I was and AM still angry. Try to find a support group or someone to talk to…it does help. Take care of yourself! Anger and frustration are very common feelings to have as a caregiver. Try your best to remind yourself that it is the disease that is causing these changes and try to be mindful of that. If your mother was your best friend then try to treat her the same way.

Trust me I know it is hard. I can assure you though that it will be even more difficult if at the end of the day you have regret and punish yourself for not being nice. You will live with that forever. This disease will take enough from you, try as hard as you can not to let it rob you of your compassion and kindness. Dig deep and you will find it for your mom and for you. I have sent nothing. My mother no longer knows me and is in the later stages of Dementia. She knows no one. My guilt for not sending gifts or visiting for that matter is horrible.

My mothers mind and all that she was is gone. She is now just a shell. My husband and I are watching his 92 year old mother in her final stages of dementia with Lewy bodies. This is the hardest thing he has ever gone through. I prayed over her today as she lay curled up in her nursing home bed and pleaded with God to gently take her. Thank you for your blog.

My lovely Dad is 73 years old and for the past 4 years has been suffering from dementia. I just thought i would post about my lovely father My Dad, my hero and my absolute closest friend He really understood, loved and accepted me more than any other person I know My Mum is 61 and has finally admitted that she cannot cope with Dad anymore and with the help of my family Dad has his ups and downs and recently he has shown signs of distress and deterioration and often cries when we visit, especially when we leave him. His life is just an existence now and though we believe he is NOT in pain physically, the mental pain is clear to see.

He is confused, often angry and upset and I just want to scoop him up and take him home even though I know I cant. He is incontinent, fragile and has a lack of coordination and often cannot feed himself. Anyway dementia is robbing my father of his body and mind… but having to watch him every other day just getting worse and worse is killing me slowly, i have a young family of kids and i am having trouble even doing the most simplest of tasks.

He loved and protected me all my life and now I feel useless as I cant do anything to make him better. I am now suffering from depression. I dicided to move to be closer to my dad and help in his long term care. I am out here. The same for me. No support, no one to talk to my mother in law is dying. My husband has no patience and no brain apparently. My sister in law is in another province and appears not to give a dam. I am loosing myself slowly throught this long 7 year process. No help not peace and no one cares. My Mum has been in a nursing home for nearly 10 years.

She is now She had a stroke which rendered her brain damaged and paralysed. She now longer can communicate properly, just a few words here and there and makes repetitious noises. She does not know us anymore. I wish she would die. The home takes really good care of her but they are instructed to minimal non sustaining care now. I was the one in the family who did the most for her, and my brother who was mentally incapacitated, died 3 years ago. I am the only one in the family who lives alone and without a partner. If I could press a button that takes her out gently and with dignity, I would.

I worry there will be nobody to look after me when I am old and I hope I can choose my own exit when the time comes. I feel hopeless and all I do is cry. I keep praying for a miracle. Seeing her this way is tearing me apart…how do people cope? Please pray for me to be strong…. Accepting where your mom is at this point is so difficult…and it sounds as though she has deteriorated quickly.

Can you reach out to a therapist or support group? It is amazing how much it can help to talk about your situation and get some perspective. Wishing you the best, Nancy. I travel 7 hours every weekend. It used to be that I cared for both my mother, diabetes, fibromyalgia, and herniated discs and HER mother my granma; dementia, failing knee implants, and 94yra old. My mother passed away last year from cancer, a few months after her mother was placed in a dementia care facility.

I come down on weekends to take care of the house, and buy the things she needs, but I can no longer talk to her. Hi Michael I travel 2 hours every other weekend to see my elderly Mum and Dad, he has dementia and no longer wants to live. He is loosing his speech, and I hate the words that he says, unkind, unloving words.

He is a different person, withdrawn and cut off from us. To be with my horse, my loyal dog and my 2 beautiful kids. I just wanted to say I understand what you say, but there is something to live for, I found out what it is, yourself, and by making yourself happy, in that process you alter so many lives, not just your own. Nancy your story is my reality exactly. So hard to see her like that. How to deal with this is what I struggle with on a daily basis. Thank you for sharing this post. My mother has finally been diagnosed with dementia.

To begin with, noone gave us a diagnosis as it came on so suddenly after a stay in hospital, so it could have been delirium as she was normal before she went in. After she came out of hospital, she did not recognise her home etc. That was the beginning. The days when she was argumentative and night wandering, I now realise were the initial stages of dementia.

Now that she has practically stopped communicating, I wish I could turn back time to those days when she was argumentative as she was physically healthier. We did everything we could to keep her active for as long as possible to try to slow down the disease, lecithin tablets, exercise etc. Then she ended up in hospital again, and the hospital practically killed her not the dementia. People with dementia have quality of life IMO. The end result is the same- death, the journey is different. I do have faith in God, and even though dementia is hard, I have been blessed by having my mother with me for as long as I have.

It is a small price to pay for being blessed with an elderly parent, who uptil dementia has been very healthy for all my life. And I refuse to give up hope. And I refuse to accept death by starvation for my mother which is what the negligent hospital is now suggesting. May God bless you all. I watched my mum die in November 6th of the later stages of her dementia. It was the most hurtful thing I have ever had to witness in my life and no family member should ever have to go through. My mum had aspirated at the end of her life and ended up in hospital.

The nursing staff did try to feed her and give her fluids but she had forgotten how to eat, how to swallow. She was getting what they called comfort eating. They gave her a spoonful of yogurt then had to suction it back out as it lay in her mouth and they could not chance her choking. For 3 weeks I had to sit by her bedside watching her fade away in front of my eyes. Her tongue was so dry and peeling from being dehydrated. I could not understand why they could let someone die of starvation. I blamed myself a lot for not shouting enough.

The doctors told me that at the stage my mum was at they can only give so much intervention and her body was ready to go. I was so ready for years to let her go as she was a shell of a person but you are not ready for watching that. No human being should have to live with that horrible disease to the end. I watched my mum in pain and cried everyday at her bedside. Then the day before my mum died my dad and I decided that she was hurting bad her organs were failing and she was moving around a lot as if she was sore but could not tell us.

The doctor said they could now give her morphine but she would not wake up again. I did not realise that they were basically saying she would die. The next morning on the 6th of November my mum passed away. I will never forget her face. The feeling of guilt and relief all at once. I wish a lot she was still here just to hold and touch once more but not to have her live it that darkness. I feel for everyone who is watching this happen to their loved one it is so sad. My pain is everyday I have cried every day from the memories I have been left with.

The feeling of did I do enough. Was she in pain. It will hurt me for a long time. My thoughts are with each and every one of you, I pray your family members do not get to that stage xx. I realize your post is over a year ago, so you may no longer be reading comments. As long as they are hydrated usually iv fluids they are not in physical pain. If they cannot swallow, it is the most compassionate choice — far less painful than aspirating because they got fluid in their lungs from a feeding tube.

Read it, tragic, my issue my mother has become a big problem, she is a psychiatric person. She keeps abusing us not alons but in fornt of people, tortures poor people like maid, swepers, driver. Pray that nature takes its course quickly and my agony gets finished. Thank you Nancy for sharing this post.

She can no longer walk, talk or feed herself but still she hangs on and on and on. She has been in a home now for almost 8 years. I console myself with the prayer that He works all things for good and that His ways are Higher than ours. It is sheer torture to live with this kind of disease for all these years and think about the beautiful person my mom used to be. How do I reconcile that mom with the shell of a person I now see? After seeing this disease slowly destroy my mother, I am pleading that she will be released from this prison of Hell called dementia.

It is hard to look at this person and even find a fragment of the mom I love so much. I console myself with the thought that someday I will see her again in Heaven and she will be the beautiful mom I remember and we will catch up on all those conversations that this dreadful disease has stolen from us. She will once again be whole in body, mind, and spirit. The problem is that God always wins my arguments with Him after such a shouting match. Time and time again, God gently leads me back to remember: He has never left us or forsaken my mother in old age or as her strength fails psalm 71 v 9.

I am so sad and so angry and so hurt about it all as the hospital want to kill my mother because she has dementia which has to be worse than her dying naturally. If it was not for my faith in God, I would have ended up having a nervous breakdown. All I can do is say: I too have tremendous guilt as my mom has been nursing home for 4 years.

She was living on her own at that time, and it became unsafe. She was calling police saying that she was being robbed. Police called me at work as my number was on her refrigerator. The told me i had to do something. I told her I would pick her up and take her out for dinner that evening; instead I took her to ER at hospital where she was transferred to a psychiatric facility to stabilize her on meds.

From there she went to a nursing home. I felt horribly guilty that she never went home. Her TV was still on, and her tray with her tea was next to her chair. She of course expected to be coming back home that evening. It tore me into pieces that I had to take her life away. Disassemble her apt, and her belongings. My mom cannot communicate much, she babbles.

She tells me she loves me, and wants to be with me. I work, and cannot take care of her in my home. No siblings to share this journey with. Its unbearably sad, and I feel so bad for the pain she bears. She is in a wheelchair, and I cant even take her out for the day as I used to when she first was there and mobile. All we can do is reach out to others and realize we are not alone.

Just embarking on this journey with my husband. It is heartbreaking to watch someone who is so accomplished, articulate and charismatic become a barely communicative shell of his former self. It leaves me feeling quite disappointed and alone sometimes. Other times the kindness of family, friends and strangers is truly breathtaking and brings tears to my eyes. All we can do is the best we can.

Big hugs Nancy — even if you think you are alone, remember there are thousands of us supporting you and wishing you the best outcome — whatever that may be. She just lays in her bed and every once in a while she makes noises or muttered something lightly. On Christmas Day we got a call that she has been taken to inpatient hospice. My mom flew home immediately, I was relieved to hear that things were going well but now I ask myself….

Should I be there too? At what point should I be there? I, too live with my mother who has gone downhill with demential for the past 5 years. I refuse to let her go to a home, even though the doctors, everyone of them have told me to place her. Just in the past week, since I had a home health aide tell her every second she was going to fall, my mother can barely walk now. She has gone down on the ground and tore her skin on her arm recently, but since I am an RN, I will heal it. I feel she is near the end. And yes, even though I know I will be devastated for many years, I do pray to god everyday to help me, to help end her misery which is making my life pure hell.

I have no one to turn to for support, except my dog. My family totally deserted her, like they never had a mother, like they never had a grandmother,, and a greatgrandmother. But she is my mother and I did make a promise to her that I would never let her go. I am thinking about getting hospice in to help her and me in this difficult time. I walk along the streets crying. I too wish I could find an MD who can make her more confortable, more relaxed, but all they can order are antiphyscotic drugs.

She crys a lot and pinches her cheecks, bites her fingers, pulls at her hair. She is stuck in a body, totally stuck. She says she wants to be normal to be the way she was. I felt so sad when I read your post. Suffice to say I could not leave. Her Dementia was not diagnosed because she is the most stubborn old lady alive today.

Just a year ago we finally were able to get the final verdict. She had has this for probably a decade or more. She is in the final decline. Its been a battle with her since the day I came but I refused to give up on her. She had a hard life and never learned how to love her children…. Everything you say I relate to. But we know and we must support each other. Thank you for the post. It brings us together. I wish you much strength to face the future. Kerri, Thank you so much for your comment. It really sounds like you have had a rough road…yes, I think us caregivers really, really do understand.

Many do not get it at all — even many in healthcare. My mom did die last November, but honestly it has been difficult to get my life back on track. Sending good thoughts your way. You have done a great service to your mom. Be proud of yourself! So understand what you are going through. My mom had dementia but she still had feelings; we built a room behind our house for her and kept watch on her with a camera that connected to all our computers.

We fed her, bathed her, listened to her babbling, loved her. Then she stopped eating. She was not in pain. We said no to the Morphine, but helped her pass away in a natural way. My father is coming to take me home. My mum is not yet 70 but has been diagnosed with lewy bodies for two years — in actual fact has probably had this condition for at least four years. Every day seems to be a landmine.

Oh, I am so sorry about your mum and your situation. Please reach out to see if there are any organizations that might be able to help you. I know what it is like to feel all alone in this. Sending you good thoughts. My grandmother wasnt a grandmother to me so much as a mentor and a best friend. Love her, hug her back, tell her thank you every time she hugs you, record her voice while she can still speak, look her in the eyes and reassure her that you love her and always have…I know,you do,some of these things yet repeat them over and over…and when you are sad and tears come to your eyes..

Tell her all the things she has done that made you feel understood by her. Take her outside in fresh air if you can. Let her know she is still a useful human being. You are admirable, because you have not deserted your grandmother even though watching her through this is so hard. My mom died last night. She was 88 and had dementia for about the past 6 years. The other part of me is incredulous that I will never talk to her again.

In the last months she was very quiet and kind of quit eating. We gave her Megace to up her appetite. I wish I had the words to make it better.

Dementia: Why putting my parents in a home will haunt me forever - BBC News

There is such a big hole left behind. I hope you have some support among your siblings, other family members and friends. Thank you very much for coming to read and for sharing in your comment…I wish you peace. You are so right… and there seems nothing we can do. My mother died finally because we found a med who gave her morfine, because we saw the pain and she also. The alternative was -a her regular med said to us — wait for a pneumonia or sepsis. I can really relate. My mother is 85 I am 44 and she lives with me. Some days I feel this way. I blog about it as well. I empathise greatly with you.

As a registered nurse for 35 years, owner and Care manager of a home that specialises in Dementia care as well as someone who has lost their Mother through what I think was Dementia, had a major stroke when I was 25years old as memory lapse and confusion had begun, along with fear and self doubt. I truly understand and agree with you. Why should Mummy suffer? All we can do is make sure that wherever she is she has to be at peace, whatever that takes.

Be it medication or constant reassurance, it is our responsibility to give her a place of cognitive peace. We surmise by what we see on the outside that she may be agitated or depressed, all we can do is address these symptoms. I am not going to say that you should pray, although I do believe in a higher power, but I have seen too much cognitive and psychological suffering in my life to stae their is a God of kindness! Please take each day at a time, take strength from doing so and love her.

My love goes to you and yours. Your post breaks my heart. But I will tell you this. I also prayed God would end her suffering but it was her suffering that deepened my faith and trust in Him. I pray that will happen to you as well. Just read your post and your comments. When one person in a family has a disease it touches everyone who loves them. My mom had cancer and by the time they found it, it was too late. She died in and she was 51 years old. That left me to care for my grandmother and she had dementia. I do believe in God and the Bible and my prayer for you is that you will open your heart to His word.

Faith and family are the greatest blessings! My mother has had Dementia with Lewy Bodies for almost 7 years. Death is so final and I do not believe in God. But thanks for raising this issue and the dialogue resulting from it. I am incredibly sorry for the pain you are forced to endure. It is true; we know so little about the disease, yet the mind is such a remarkable organ, that who knows for sure what is transpiring in the minds of those afflicted.

It never shrank away. What got me through, was my belief in God. I believe that God, who is Spirit, was able to attend to my mother in a way that was impossible for me. He is able to bypass the mind and connect on a level that is beyond us. May He do so for your mother and comfort your spirit also in the process. My maternal great-grandmother died when I was five and my maternal grandfather died when I was ten, but then everyone close to me was pretty much fine for a while.

There have been no truly sudden deaths. I am now thankful that we took a picture with dad in his hospice bed — it turned out to be something I could share with my mom. Although many people will tell you to never remind someone with dementia about the loss of a loved one, I felt that it would be more harmful not to tell her. I wanted her to be able to grieve his loss.

When I visited, I would bring pictures of dad, share a happy story about him with mom, and mention how much I missed him. This was a new behavior for her, and it was unlike my mom to be physical. They suggested we hire a personal care assistant PCA to help her manage her day. We realized that it was time to start looking into a community specifically for people who need memory care.

Due to her dementia, mom already had some issues with paranoia. Unfortunately, bringing a PCA in only made mom more paranoid. This meant that she had a hard time connecting with most of the residents and staff in her community. Without dad, she was truly alone much of the day. I also hired an aging life care manager to help me find the best memory care community for mom. She helped me understand and recognize the key attributes of a good memory care community. Assisted living communities are designed to help people navigate physical limitations in order to complete daily functions and activities.

She had been complaining about back pain, so her doctor prescribed her Tramadol.

Caught off guard

Mom ended up on bedrest and behaved as if she were on hallucinogenic drugs. We later found out that the medication caused this reaction because of the type of dementia that she had. The possibility of such a reaction was never mentioned to me when she was receiving her prescription. It took nearly 3 weeks for the drug to work its way out of her system. She spent so much time in bed recovering that she became weak and unsteady.

Several months passed before she was able to walk on her own again. Once mom was stable, we moved her into a memory care community. We moved her on January 17, We knew the transition would be difficult. Often, for people with dementia, switching residences can result in a recognizable decline.

Although she adapted quite well, she had a fall that landed her in the emergency room after only a few months in the new community. She was unable to fully recover from the fall and could no longer walk unassisted. She would try to get up and go whenever the notion struck her. To keep her safe, we brought a new PCA back on staff. Mom lived in the memory care community for nearly a year. We were lucky to have found a PCA that doted on mom and that mom trusted.

It was nice to have someone I could contact to know how mom was doing on a daily basis. In December , mom tipped over while washing her hands. She never hit the ground, but she complained of hip pain, so she was taken to the ER. When I arrived, I immediately recognized the significance of her injury. Sometimes, when bones grow frail, a simple twist is all it takes to break a hip. While they took mom to X-ray, I found a private restroom and sobbed. I knew that elderly women who break a hip are at an increased risk of dying within a year of the incident. The surgeon repeated that to make mom comfortable, we should operate, and to do that, I needed to lift the DNR order.

I called the aging life care manager back in and a geriatric doctor to help me navigate my choices for mom. The first test identified a heart and lung issue, eliminating the option for surgery. She was alert even after four courses of morphine. And at some point during her stay at the ER, she had a small stroke. My mom no longer recognized me, and she was unable to remember that she had children. It had become clear that our only choice was to move mom into hospice care. Her health was fading fast, and we wanted to make her last days as comfortable as possible. We moved mom back to her community where she had hour support and hospice care.

I called all of my siblings and they scheduled one last trip to see mom. Over the next week, mom mostly slept. By the end of each visit, I would end up crying at the foot of her bed. I told her how much I would miss her, but reminded her that dad was patiently waiting for her to join him. When I visited her on Christmas Day, her breathing was jagged. The memory community nurse called at 5: Even though I felt it coming, I was still stunned.

Thankfully, my husband and children were with me when I received the news. They were able to take me to see mom one last time and say my goodbye. If I knew how things were going to progress, I feel like I would have made many different decisions throughout my caregiving journey. A wonderful social worker told me that I should forgive myself, because I made the best decisions that I could with the information I had at the time.

I often share this advice with other caregivers who feel the same remorse about their caregiving journey. I was told quite often to be kind to myself during my journey. Now that my family caregiving journey is over, I believe that this is the best advice I was ever given. I hope that after reading about my experiences, you can take this to heart and find peace on your journey. While I was caring for my parents, I started to build a part-time business focused on helping other caregivers. This part-time business would become MemoryBanc.