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Only able to remember just a little bit of how to be alive. It's as if they are stuck between life and death and goes on on on on and on on it never gets better. Do any of you think that when this is over that feeling will go away?
I too have a mom going to be 97,,but when I tell her that she says she's 93,why make her older. I take advantage of these days. Since my stepfather past away dementia has really kicked in. She knew in January he had left us. But after that she still thinks he's a live in a rehab. Or hes cheating on her. Good moments she'll tell me I'm not with her long enough but then she sits there and stops talking and has trouble keeping her eyes open. She knows who I am & everyone and is fairly alert at times. she'll tell me that I've changed. I use to be able to look up to her and ask her advice.l'll lay in bed with her & she talks sometimes and she doesn't stop. Some Nights you could drop a bomb and she wouldn't even hear it.. I'll just stare at her sleeping. Up to age 94 she was doing greatd . it breaks my heart seeing these changes. I have a older sibling an hour away hasn't seen her in 2,years. But your right its like she's not with us at times. people say I'm lucky to have her still with us. Yes & no because she is 75% helpless & I look. & do not see my mom anymore. Everyday is a struggling. I miss my mom but at least I still get morning kisses and bedtime kisses. Good morning & good night. I could go on - on but I see that we all are not alone. So what do you do? Fortunately I have home health aides but its been the Last 5 Years as I'm still working & there care taker. And dad was a very man. Heres to all of you caretakers, hang in there and best of luck.
There have been a lot of responses towards Mother / Father / Parent. I'm going through this with my husband. Does anyone else have comments about a husband, wife, spouse scenario? I went through end of life with both parents - hospice at the end, but did not deal with Alzheimer's. If appropriate under this original question, I would like to see responses accordingly. Thank you.
My response was about my Husband. It is true that there is a big difference when it is your spouse or partner. The entire relationship changes from an equal one to one that is more like 80/20 then 90/10 then it is ALL you 100% and that can be difficult for both to handle and accept. To make matters more difficult the loss of physical contact, emotional connection is difficult to accept. Or in the cases of some dementia the sexual demands are hard to handle. No matter what happens guilt, anger, frustration are other emotions that you have to deal with along with all the other things. Bottom line you see the love of your life change and the relationship change forever. One of the ladies in a Support Group I go to called herself a "Married Widow" I kind of like that term because that is how I felt much of the time.
Great question. Answer is yes. I'm still trying to come to terms of the illness diagnosis, the parent-child reversal and feeling like my Dad has already left the building. No more fun conversations or day trips; I hear about the Depression, World War 2 and grumbling about every pet peeve he's ever known. It has been very sad to see another side to him emerge that is so bleak, bitter and just sour. The man I knew was brighter, practical joker and loved a good laugh. I guess that man, I have to wait till Heaven to see again, but grieving for them while they are still physically present... I don't know how life can prepare anyone for this path.
I feel just the same with my father! I hope the happy memories return in the future, but right now I feel battered and scarred from this stage of life.
My mother has got Severe Dementia I find myself in tears most days, then those moments she has of clarity that are so fleeting I try and make the most of but they are far and few between, I too wonder if those feelings will ever lessen, just dealing with it all one day at a time. I felt really alone when mom first came back home but then I got Hospice involved and they're a huge help, still not easy but a bit better so I'll take what I can get.
each and every one of your responses make my heart ache ! also you all bring tears of RELIEF to me!! I believe I actually feel guilty, for my feeling greif when she's still with me! I am Thankful for this sight!! all of you have been through so much heartache and pain,I send prayers to all of you Thank you for understanding
Absolutely! I would sit with my mother and she would ramble about relatives who were deceased and say they are alive and I did not argue. She would try to get up and argue me down that she could walk and I actually had to lower her hospital bed, put a pad down and let her roll right out onto the pad to show her I was not lying to her. She would stop but I had to prove it to her. Same thing next visit! I would leave in tears. I grieved my mother so much before she passed that when she passed, I was surprised that I was relieved for HER instead of being upset and crying myself. She was in a pitiful state and our Lord came and got her and she has a new body now. My cousin told me I had already grieved her passing before she physically passed away. She was right. I loved my mother. I wish you the best.
I'm going though this exact thing with my mother right now. My biggest problem is the rest of my siblings staying away because they can't stand seeing her like this. My older brother at least takes my calls and when Mom is having a lucid moment will take the time to take her call. I have a much younger sister who lives a long ways away. I've pleaded with her to at least write our mother so on a good day she would read and reread a letter. Now she steals mail from others and claims it as her own. I've thought about writing her cards and including pictures from my sister just to help her pain of never hearing from her baby. Of course in her mind she is still a baby and not a grandmother herself. Of course I try to keep everyone up on Mom's current health and when I recently spoke of the possibility that she is being evaluated for cancer and that I didn't want to treat, just put her on hospice, I meant with a lot of resistance. So much fun being the primary caregiver. I know when the time comes I will know I have done all that I could. Just not sure how sympathetic I will be with the family that hasn't been there to pre grieve.
I've been my mom's only caretaker for over 5 years. It's just me, I live with her. In the last few years I've lost a marriage, a brother, a sister, a brother-in-law, three very important relationships, my job, my home and living with my kids. And now I lose more of my mom every day. She has Lewey body dementia. She doesn't remember that I'm her daughter, she does remember that my brother and sister are gone, but the hardest part for me right now is her thinking her parents and grandparents are alive. She keeps a plastic bag full of stuff - lotion, kitchen stuff, candy, etc. - for my grandmother (who died in 1993). I've lost people by divorce, by the breakdown of the relationship, by sudden death, by prolonged death, and now this - losing someone literally piece by piece by piece, a little more every day. My mom was always physically beautiful. She modeled before marrying my dad and looked like Elizabeth Taylor. She's almost unrecognizable now - she looks haggard, tired, she wears a scowl all the time and I often can't get her to comb her hair. She was always tall with perfect posture and now she walks bent over in the shape of a perfect C from her spinal degeneration. She was always laughing, talkative, nice to everyone. Now when she laughs it's in response to something that didn't really happen, she talks in a circle that gets smaller all the time, using the same words and phrases over and over. She's still nice but now it's to everyone but me. I am now stupid, an idiot, a liar, lazy, selfish, controlling, etc. I hear this very often, even as I'm living with her, paying all the bills (working 5 freelance jobs at a time to do so), taking care of every issue and expense and problem and need she has. My mom used to talk about how smart I am, how pretty and capable, but now I'm just a waste of time with a need to control her. It's hard to recognize her at all, both physically and mentally, and it seems as if every day there's less and less of her that I know. I've become as much a shut-in as she is. People have just disappeared over the past couple of years. So while I'm still trying to deal with my own grief from losing my siblings and marriage and home and etc, I'm also trying to deal with this daily death of my mom. I don't know if that means I'll already have grieved her when she passes away or what but I have a strong suspicion that I will still have all that grief hit me. It's a daily death, sometimes a big death, sometimes small, but daily. More of her disappears every single day. And I go through the grieving process every single day.
I know that is so painful for you. I watched my mother change like that too. She also said she had a 2 nd husband (no she did not). She argued that her parents were alive because she “saw them” standing at the mailbox 2 weeks earlier (not). Said my brother was still alive ( not). I just agreed with her because it is not good to argue those things with a dementia patient. It is hard! She passed last December and I miss her but I miss my “ real” mother. Not the dementia mother.
It is hard, to watch our loved ones, become a shadow of their former self's.
I am one of 9 children. Some involved in my Dad's life (92) & some not. One of my sisters is the researcher. I am the MPOA
My sister is always researching, what works for dementia patients, what doesn't. Go to youtube & put in "alive inside".
Music is a magical thing. Listening to songs, they grew up with. I am an elder caregiver. My dementia client loved Perry Como. We played it all the time. She loved listening to it, singing along with it, moving her feet to it.
They are in there. Find something, that brings them out. Also remember, hearing is the last to go.
While hearing on average might be the last sense to go, we have the issue that mom's hearing was already going south, long before dementia (otosclerosis, which she could have attempted having corrected by surgery many many years ago!)
She was down to just one hearing aid before the dementia. That was iffy once dementia kicked in - she wouldn't remember to change the battery. At MC, despite telling them her provider said change the battery every two weeks, most of the time when I visited she wouldn't even have it in, I would have to search for it and find it on the end/bed table, under the table, under the bed, IN the bed, usually with a dead battery. Sometimes she would have it in but with a dead battery. Sometimes she wouldn't know where it was, other times wouldn't remember that she even used one!
Even though the condition could degenerate to the point where she would not be able to hear even if she were wearing it and it was functional, not having it working for so long probably contributed to more loss. Then came the great news - it went through the laundry with her bedding. TOAST! It took me a while to find another local provider (after no response from the previous one) and then time to order it. This one is rechargeable, so I asked that THEY keep the charger (if it gets lost we'd be SOL) AND take the hearing aid from her at night, charge it and give it back in the morning. They (and I) have to remind her over and over and over to put it in, which she will do, then take it out again. At this point I don't think anything will help her hearing, so music is out.
All that wasn't bad enough - she didn't even have the new one 2 months and it is MIA. No idea where it is. Grrrreat. We ordered 2 and had the second one set for the same ear - he cannot get there until next week to set her up, so meanwhile she is without one. At this point if they damage or lose this one, I am done. She was eligible for the insurance rebate this time, but not again for 3 years and they are TOO expensive to keep buying and losing/damaging. Plus at this point I do not think it is doing much for her. Meanwhile, we keep the Macular Degeneration treatments going - if she goes totally deaf AND blind, what's left for her?
Yes I always say that I am grieving for what was. I grieve for the conversations and the for the memories that my husband no longer has. I am the one who holds the memories. Grieving is part of this disease and it makes me very sad. Little by little he is taken away and I take one day at a time. I ask God to give me strength to make it through.
My husband has stage 4 Parkinson's, dementia and is clinically blind. Your post could of been my post. A lot f comments on this site are for parents. For some reason (for me) - it is different when it is a husband or spouse. There is a book titled Ambiguous Loss by (can't think of her name right now). If you haven't heard of it, you might want to look it up online. Also, The 36-hour Day (book), might be helpful too. If you are like me, I don't have time to read any more, but try to read a couple of pages when I can. Best to you...
Oh, absolutely...every day. But I am also thankful that my mom knows me, my name, still feeds herself, loves music activities, can converse ( but not remember 5 min. later), and enjoy her hobby of eavesdropping. This will all change, of course. I grieve that she is having to age this way. She always hoped that her end would be simply not waking up one morning. I worry most about times when she is suffering, either emotionally, cognitively, and physically.
You are grieving the loss of the person you remember. This is normal and a process. You should move from the feeling of loss to acceptance.
Letting go of what "was" is tough, but you can also celebrate what still remains of your loved one's abilities. Find ways to engage in whatever ways are still possible.
Please consider joining a group with caregivers dealing with similar issues. You need the support and empathy that you are not alone in this,
Highly agree with Taarna about joining a support group. This is a good start right here. It's always good to know that you are not alone in what you are going through and that they are others who are going through or have gone through the same. Sometimes just having someone to talk to about it is the biggest help you will find.
Having lost my mom and oldest brother to Alzheimer disease, by the time they got to be incoherent, the person I knew was gone. I try to look back on the good times, and remember them both how they were before the disease took hold. It was a blessing when they passed away. Who among us would want to exist like that, with no hope. Your loved one is very near the end now.
A hospice director said to my friend when this friends mother had Dementia “your mother will die 1 time but you will die a thousand times”. This feels true to me as I care for my mom 24/7. She has had 2 strokes and has Dementia with aphasia and apraxia. It is so hard to watch them struggle.
Yes! My dad has been at a memory care facility for over 2 years now. Some of the residents have been there for a decade! They all wander around, lost and confused every day. Some are angry, some are sad and cry off and on all day. Some wait by the door for their spouse or someone else. It's horrible. Limbo-land. It sounds awful but it makes me think of zombies :( Pretty much just waiting to die, wasting away. There has got to be a better solution. My dad discussed suicide and certainly said he would never ever want to live this way. I will be relieved when he passes. I'm not even sure I will cry :(
When I look at a photo of my Husband prior to the Alzheimer's I see a man that is smiling (most of the time) with a sparkle in his blue eyes. When I look at photos taken even as soon as 1 year after his diagnosis I rarely see a smile and the blue eyes that once sparkled are no longer sparkling. I came up with my own theory (a wacky one but mine..) I have always heard that the "Eyes are the window to the Soul" My theory is that God takes the soul early so our loved ones would not have to know what the body would have to endure. So I was left with the shell to care for until the body was ready to go. I also mourned him while he was here but I also rejoiced in the funny, quirky, things that happened because for a brief time I would catch a glimpse of him once again. (almost like he came for a visit then was gone again) I thought I was prepared... I thought I knew what my reaction would be.... I thought I was ready.... I felt like my heart had been torn from my body and stomped on!.... I felt like I could not breathe!.... I felt like a part of me died that morning!....
2 major organs in your body are fighting. Your heart. You don't want this person to die, you don't want to be left alone.. Your Brain. You can not imagine this person you love living like this, not knowing family, friends that had been such an important part of his/her life. No more laughing, no more sparkling blue eyes... You hope you make the right decisions, you want the heart to "win" but have to give into the brain.
I think there are 3 parts of grieving 1. During the course of Dementia or any major terminal illness. 2. At the time of death. 3. Living afterwards. It is what you do after that is what is important. What would your Loved One have wanted you to do. Sit and mourn for the rest of your life essentially wasting it. OR Enjoy the things you did together, go to the places you said you wanted to go, do good with your life, share what you have learned, help others going through what you have gone through. This is how I am living my life, that is what he would have wanted.
"Anticipatory Grief" happened for me with my father and I feel like it's present for me now with my mother. Mom was his primary caregiver so I'm sure things will be somewhat different now that I'm hers. With my Dad's Parkinson's and Dementia it was like going through most of the stages of grief while he was alive, ill, and fading. I still grieved when he passed but the overall process seemed shorter and almost like I didn't have to pass through the first stages again to reach "acceptance". Shock*, denial, anger, bargaining, depression, testing*, acceptance (*modified Kubler-Ross model). Hugs to you!
There will never be "closure" until the person dies; I am not a believer in "anticipatory grief" because one will never be prepared when that final death happens. My mom has the very final stages of Alzheimer's to the point she even forgot how to bear down to have a bowel movement (so you can imagine the horror getting her to "go" and that's every other day). No matter how advanced the disease is, there are moments they are lucid and will even talk to you. When they die you will never see them again, or their smile. and the house will be empty, still, and dead, like living in some nightmarish tomb. I have been her caregiver for over 20 years and I know I will be destroyed the moment she dies. I have never left home so I have no idea how it is to live without mom. You mom is the repository of your past--she is the embodiment of your childhood, growing up, and every fond and beautiful memory..when she dies, they die. When mom dies I will be thusly destroyed too..but life will go on. The bills keep on coming in. The cats will need to be fed, litter box changed..so just go on from there.
I know I will find it a shock that my time will be my own and I really don't know how to deal with that. I don't know how it feels to be without mom.
Prayers for you. I believe grief is grief whether the person is dead or not, and it sounds like you and I have been grieving for a long time. I disagree with Mom being the repository of your past. You own that. It won't die with her and you will need it to find your new way to live. I also am at the end stages with my loved one and I have already found a friend at church and asked her to make sure that she reaches out to get me involved in all the things I would like to be doing but can't because I'm a caregiver. It sounds like you are very responsible. You will survive. My prayer for you is that you will not only survive, but thrive. And Mom's essence will be with you just about an arms reach away on "the other side" watching you and helping you.
Definitely! 15 years, and I have cried various times over each those years. I know many people feel they get to a point where they don’t realize what is happening. I have not seen that with my mom. She rarely opens her eyes anymore. I play music from my phone for her. A few weeks ago, I Can Only Imagine by Mercy Me came on. Her eyes welled up in tears. And so did mine. I used to think it would get to a point she would be totally disconnected to reality and in a state of bliss. For the most part she does seem more at peace. I also thought I would get to a point where I would have been through the whole grief process and not cry. I am now pretty sure I will also cry after her death.
There is a name for this: anticipatory grief. It's one of the reasons Alzheimer's is known as "the long goodbye". When a person changes gradually over many years it can be hard to keep hold of the person they once were, I was even questioning whether this new, weak, needy, selfish person was my real mother and my memories were false or she had lived a false life.
AgingCare has a couple of articles you may find helpful:
Thanks for the links. Read both articles. I think the distinction between “early grief” and anticipatory grief is a good one. Once there’s a diagnosis it’s the beginning of all kinds of losses and grieving.
It's such a cruel disease for the person who has it and cruel for the person's loved ones. Interaction with mom is like talking to an 8-year-old who keeps regressing, not growing up. Yes, I'm grieving now and expect to grieve all over again when she passes.
Mom has mixed dementia (Alzheimer's and vascular dementia). At my last visit, I noticed a steep decline from the previous visit, which isn't unusual for vascular dementia. It hurts to watch the downward spiral. Thankfully, she doesn't seem to be aware at all.
I know I did, watching my mother slip away. She became consumed by hallucinations and delusions. I fought hard against becoming her “mom” and switching roles with her, but I had to put on my big girl pants and just do it. She’s been gone for 2 1/2 years and the sadness is still there.
Ahmijoy; Thank you for answering .I always worry if I posted my questions correctly in the right places for instance I wondered if I should of posted this in discussions I just realized the the difference .This mind scrambling disease.
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But after that she still thinks he's a live in a rehab. Or hes cheating on her. Good moments she'll tell me I'm not with her long enough but then she sits there and stops talking and has trouble keeping her eyes open.
She knows who I am & everyone and is fairly alert at times.
she'll tell me that I've changed. I use to be able to look up to her and ask her advice.l'll lay in bed with her & she talks sometimes and she doesn't stop. Some Nights you could drop a bomb and she wouldn't even hear it..
I'll just stare at her sleeping. Up to age 94 she was doing greatd . it breaks my heart seeing these changes.
I have a older sibling an hour away hasn't seen her in 2,years. But your right its like she's not with us at times.
people say I'm lucky to have her still with us. Yes & no because she is 75% helpless & I look. & do not see my mom anymore. Everyday is a struggling.
I miss my mom but at least I still get morning kisses and bedtime kisses. Good morning & good night.
I could go on - on but I see that we all are not alone.
So what do you do? Fortunately I have home health aides but its been the Last 5 Years as I'm still working & there care taker. And dad was a very man.
Heres to all of you caretakers, hang in there and best of luck.
To make matters more difficult the loss of physical contact, emotional connection is difficult to accept. Or in the cases of some dementia the sexual demands are hard to handle.
No matter what happens guilt, anger, frustration are other emotions that you have to deal with along with all the other things.
Bottom line you see the love of your life change and the relationship change forever.
One of the ladies in a Support Group I go to called herself a "Married Widow" I kind of like that term because that is how I felt much of the time.
I felt really alone when mom first came back home but then I got Hospice involved and they're a huge help, still not easy but a bit better so I'll take what I can get.
I am one of 9 children. Some involved in my Dad's life (92) & some not. One of my sisters is the researcher. I am the MPOA
My sister is always researching, what works for dementia patients, what doesn't. Go to youtube & put in "alive inside".
Music is a magical thing. Listening to songs, they grew up with. I am an elder caregiver. My dementia client loved Perry Como. We played it all the time. She loved listening to it, singing along with it, moving her feet to it.
They are in there. Find something, that brings them out. Also remember, hearing is the last to go.
Hope this helps :)
She was down to just one hearing aid before the dementia. That was iffy once dementia kicked in - she wouldn't remember to change the battery. At MC, despite telling them her provider said change the battery every two weeks, most of the time when I visited she wouldn't even have it in, I would have to search for it and find it on the end/bed table, under the table, under the bed, IN the bed, usually with a dead battery. Sometimes she would have it in but with a dead battery. Sometimes she wouldn't know where it was, other times wouldn't remember that she even used one!
Even though the condition could degenerate to the point where she would not be able to hear even if she were wearing it and it was functional, not having it working for so long probably contributed to more loss. Then came the great news - it went through the laundry with her bedding. TOAST! It took me a while to find another local provider (after no response from the previous one) and then time to order it. This one is rechargeable, so I asked that THEY keep the charger (if it gets lost we'd be SOL) AND take the hearing aid from her at night, charge it and give it back in the morning. They (and I) have to remind her over and over and over to put it in, which she will do, then take it out again. At this point I don't think anything will help her hearing, so music is out.
All that wasn't bad enough - she didn't even have the new one 2 months and it is MIA. No idea where it is. Grrrreat. We ordered 2 and had the second one set for the same ear - he cannot get there until next week to set her up, so meanwhile she is without one. At this point if they damage or lose this one, I am done. She was eligible for the insurance rebate this time, but not again for 3 years and they are TOO expensive to keep buying and losing/damaging. Plus at this point I do not think it is doing much for her. Meanwhile, we keep the Macular Degeneration treatments going - if she goes totally deaf AND blind, what's left for her?
Best to you...
Letting go of what "was" is tough, but you can also celebrate what still remains of your loved one's abilities. Find ways to engage in whatever ways are still possible.
Please consider joining a group with caregivers dealing with similar issues. You need the support and empathy that you are not alone in this,
When I look at photos taken even as soon as 1 year after his diagnosis I rarely see a smile and the blue eyes that once sparkled are no longer sparkling.
I came up with my own theory (a wacky one but mine..) I have always heard that the "Eyes are the window to the Soul" My theory is that God takes the soul early so our loved ones would not have to know what the body would have to endure. So I was left with the shell to care for until the body was ready to go.
I also mourned him while he was here but I also rejoiced in the funny, quirky, things that happened because for a brief time I would catch a glimpse of him once again. (almost like he came for a visit then was gone again)
I thought I was prepared...
I thought I knew what my reaction would be....
I thought I was ready....
I felt like my heart had been torn from my body and stomped on!....
I felt like I could not breathe!....
I felt like a part of me died that morning!....
2 major organs in your body are fighting.
Your heart. You don't want this person to die, you don't want to be left alone..
Your Brain. You can not imagine this person you love living like this, not knowing family, friends that had been such an important part of his/her life. No more laughing, no more sparkling blue eyes...
You hope you make the right decisions, you want the heart to "win" but have to give into the brain.
I think there are 3 parts of grieving
1. During the course of Dementia or any major terminal illness.
2. At the time of death.
3. Living afterwards.
It is what you do after that is what is important. What would your Loved One have wanted you to do. Sit and mourn for the rest of your life essentially wasting it.
OR
Enjoy the things you did together, go to the places you said you wanted to go, do good with your life, share what you have learned, help others going through what you have gone through.
This is how I am living my life, that is what he would have wanted.
I know I will find it a shock that my time will be my own and I really don't know how to deal with that. I don't know how it feels to be without mom.
AgingCare has a couple of articles you may find helpful:
https://www.agingcare.com/articles/grieving-before-death-terminally-ill-116037.htm
https://www.agingcare.com/articles/dealing-with-alzheimers-personality-changes-147375.htm
Mom has mixed dementia (Alzheimer's and vascular dementia). At my last visit, I noticed a steep decline from the previous visit, which isn't unusual for vascular dementia. It hurts to watch the downward spiral. Thankfully, she doesn't seem to be aware at all.