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Not sure if I posed this question correctly but:
I was just given a book to read about dying and the work that hospice does in support of that. The first case I read about had to do with an 83 year old woman dying of cancer and her attempts at saying good bye to her husband. It appears that because she had all of her faculties, she was able to do this. It also described the reaction of her husband to this.
In the case of a person who has dementia, what kind of “closure” is there during the process of dying? What is their process for saying goodbye and what reaction will their caregiver have as they are actively dying? It seems that the cruel disease of dementia also robs them of their dignity even in death. Do any of you have any thoughts you can share in terms of your experience with a dying loved one with dementia?

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A death from cancer is miles away from a death from dementia. My husband has dementia and my mother and MIL both died from cancer. My mother and MIL both could express their goodbyes orally and in writing and did so. They were able to decide when treatment should be discontinued and just comfort methods started.

My husband on the other hand is barely aware of where he is, time of day and who is in the room, and has difficulty swallowing. He is totally incapacitated mentally and physically, can't walk, talk or write any kind of instructions. He had this talk with me a couple of years into his dementia when he still could make lucid decisions. As his POA and now guardian, I know what his wishes are. He took each of our grown children aside and talked to them, expressing love and apologizing for anything he may have done or omitted. That was about seven years ago. He is in the final stages of FTD. If he stops breathing or his heart stops I know that DNR is the way to go, if he gets pneumonia to not give antibiotics, if he gets another life-threatening disease to just keep him comfortable.

As his wife and primary caregiver, I am keeping his dignity intact by following his wishes as he slowly slips farther and farther away. I am saddened to watch his dementia take him away, but he is in a place now that he doesn't realize what he used to be and he no longer mourns his former life like he once did. This life is the only life he remembers clearly.
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While there is no set pattern to dementia, it is likely that your patient will have gone away in his/her mind long before their body fails. Prior to reaching that state, the patient really doesn't understand the extent of their dementia, so telling them goodbye would only frighten them. I realized I was saying goodbye to my mom - in my mind - every day, when she would slip out of reality and slide into delirium. By the time Mom was totally delirious, I had long since accepted the fact that she was gone, even though her body still lived.
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This is one of the most difficult and personal and painful question to answer. My husband suffered a massive stroke that after months developed into vascular dementia. It was at first a gradual process but seemed to speed up in the last couple of weeks of this life. Toward the end our communication was limited to direct eye contact and my holding both of his hands. Deep down we both felt the connection between us (we were married for 46 years) - yet he had lost the ability to speak. You know when time is running out and I felt so did he. So, I did the talking for both of us. I knew what he wanted to say and said it for him and most important I repeated over and over how much I loved him, not to worry about me, that I would be missing him, but I would be able to take care of myself. With other words, I wanted to assure him it was alright for him to go into a better place, into God's loving embrace. I did not want him to worry, or struggle and fight the inevitable. He relaxed in my arms and I saw in his eyes he understood ... his death was peaceful.
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My mom lived with lymphoma for 29 years and this year began to suffer with MDS at age 85 which led to anemia and dementia, lack of O2 etc. She had delerium in the hospital stages of her last months of treatment and various lucid discussions with her family and friends while she could. It was important to her and family members to have those meaningful talks whenever she was lucid. Get in and have those talks as soon as you can without scarring your loved one. I am glad that we were able to all have some time as the dementia did set in along with the disease and other ailments which just kept getting worse to the point where she could no longer have a meaningful conversation. NH kept her heavily medicated and comfortable for her last weeks. There are many other patients who still are living with dementia or AZ for longer periods and have no ability to recognize or converse with you so that closure comes even though the body still goes.
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I just went through this with my mom about 53 days ago...not that I am counting...
Mom was 96 and lived with me and my family for 6 years. During that time she went form being able to stay alone and function pretty well to me being her more than full time caregiver due mostly to dementia. It is cruel and horrible to watch. It broke my heart to see her look blankly into my face, and yet there were days she would know me and be able to visit. She would see things/people and before she was in the wheelchair she would "want to go home" so I would have to follow her throughout the house to make sure she wasn't getting out on me or do something that would injure her. Anyway, in our case she would not eat for me one day. At first I thought it was a short term thing. But the next day I called her doctor because I was worried that she would get dehydrated. They were not extremely concerned and told to keep trying the things I was but when she still would not eat or drink the third morning I took in to ER. They were going to re-hydrate her and maybe keep her a day til she would bounce back but then within the next 20 minutes they came back into the room and said her numbers were so wacky that they were not sure she would bounce back. I went from being elated she was getting fluids via IV to looking at bringing her home with hospice. She came home on Tuesday afternoon and passed away on Saturday am. She slept most of that time. She would open her eyes when we would turn her and I think she knew us and was at peace, My brother was not able to come and i think she hung on until I finally was able to tell her that he wasn't able to be here but he sent his love and it was ok to go and be with dad in heaven. I struggled with that only because I didn't want her to go even though I think she knew it was time and that is why she quit eating for me. I am sure everyone is a little different but I think with dementia they are at peace and you can still say your goodbyes and talk with them even if they cannot or do not say much. They feel the love, and I know it helped me when someone said I should tell her its ok to go. My friends mom waited until her brother, who didn't want to be there finally came and at least said he loved her. She just needed to know that and passed within hours of him visiting her. After my friend told me that and I got up the nerve to say that to mom about my brother she seamed to also let go and was ok with it. I hope this helps. I miss my mom so so so very much and I am in the process of figuring out the next chapter in my life since she is no longer in need of my care giving. I am looking for a job and trying to move on.
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My husband was in a personal care home the last three weeks of his life. He had anoxia, a complete loss of short term memory for thirteen years and I took care of him mostly at our home with outside help as well. He could recognize me and still function at a relatively high level for someone with no memory; however, time finally ran out. He got a severe UTI and had a week in the hospital and then to a temporary stay in the NH for rehab. I knew I could no longer take care of him and I was at the end of my rope so I enrolled him in a personal care home.

He was very cantankerous anyway, but when he went to this home, he basically started acting like a caged animal. I would get frantic cals telling me to get to the PCH as soon as possible. The caregivers there were afraid of him, though by now he could barely walk. I ended up spending many nights there in a chair by his bed.

At the second week, PCH suggested we call hospice. I said OK, knowing what hospice was; however, I never thought my husband was in the active dying stage. At the end of that week, I went out of town for a day trip. On the way back, the home called me and said my husband was on his stomach gripping the rails of the bed and that they could not move him. I was so tired and distraught that I didn't go to check on him at the home.

The next day I got a call telling me to get to the home ASAP because my husband was dying. I got there within 15 minutes. He was already brain dead and was in the last throes of gasping for air. I stared in disbelief telling him to come back to me so I could tell him I loved him, and then he stopped gasping.

I am still devastated that the last face he saw was not mine. I am so mad that I wasn't called and actually told that my husband had only days to live. I would never have left his side. Every time I think about him I cry. Because of his inability to remember anything, I have this sick feeling that in the end he thought I'd abandoned him.

Two days before his death, I had gone to visit him. He was so drugged that he could barely talk. I was so naive. I knew the home was having trouble controlling his temper so I thought the drugged effect was just that so I didn't think too much about it. I leaned over him twice and told him I loved him and kissed him. He told me in a very difficult manner and in a whisper that he liked my face.

I am so upset that I wasn't there to hold his hand as he took his last breath of air.

Please advise me if any one has had anything like this happen and what am I to think about all of this?
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Thank you all for your answers, as I also think (project) about what lies ahead for both myself and my 82 yr old mom. Enjoy the present, I know, but those in and outs.......new to me and hard....
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Stout25. I had the same experience when my father died. He was ok when I left him except he didn't want to stay at the hospital ( he was getting fluids). I said I will be back in the morning to bring you home and I got a call the next morning elling me to get to the hospital right away. He had had a heart attack and the had him on a respirator, so he had actually already gone but I was with him when he took his last breath. I regret that I didn't stay the night with him and that I wasn't with him when he had he heart atack.
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Charles 1921, Thank you for your comment. I'm haunted by the thought that my husband did not see my face at the time of his death. If he'd had a memory and could have remembered that I'd been there with him a couple of days before, I'd not have these feelings. After I'd seen him and told him I loved him that last time he was alive, did he then let go and die peacefully. I want an answer that I'll never get.
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Stout, this is going to sound weird, but this is how I view things....In my mind, someone who is dying has gone far, far away into their own souls, and there, they wait for freedom. The soul is very far away from the body that you see on the outside, and all it's doing...the soul isn't touched by any of it, and it's fully aware, even though the body can no longer function, of all that goes on around it. This is how I truly believe it is. The place where the soul retreats to is so deep, a good, quiet, peaceful place where you can't reach him, aren't aware of him, can't 'see' him...but he certainly is aware of you, what you say, all that goes on around the body. He heard you. He saw you at the very end, of that there's no doubt whatsoever in my mind anyway.. *hugs* .
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Stout25 My heart goes out to you. It surely does. Sort of the same thing happened to me with my dad and it is so very hard not to feel guilty and, yes, even angry over what might have been. You may not believe in this sort of thing, but for what's it worth, and although I think you actually did say your goodbye the last time you were there with him, I believe that the very second he drew his last breath, he was right there with you - No matter where you were at the time - And - I bet he might have had a bit of a laugh at how you struggled with the thought of not being there (not an unkind laugh, mind you - but a "hey, no big deal, I'm finally out of that body and mind and into this new one, kind of laugh).
The thing is, nothing in life is ever going to be perfect or work out exactly how we want it to work out, and you cannot hold on to some UNDESERVED guilt in spite of the fact that your husband was FREED without you standing right beside the body that he was freed from.
Don't mean to be preachy on ya and please forgive me if I sound that way. You see, in writing this to you I am also writing it to myself. We gotta quit this guilt stuff and move on. Right?
Anyway, you are not alone and what you have felt and what you have experienced has been felt and experienced by countless others and we need to allow ourselves forgiveness from ourselves ... for we are the only ones blaming us. Your hubby doesn't and neither does my Dad.
HUGS!!!
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Stout25, pleae don't feel guilty, that goodbye you had just two days before was I'm sure the best your hubby could manage. Lots of people have less in the way of good memories to hold on to than "I like your face." You might not have been of any help when he was in some kind of spasm holding on to the bed like that, and that last bit, well, he might not have known what was going on at all.

I wish I could have been there for my dad's passing like I was for my mom's, but with dad at least I knew we had already said all the important stuff and the people with him loved and cared for him too. They also couldn't quite tell me how bad it was and it sounded so routine earlier in the week...I would not have gotten there anyways if they had told me even as much as 12 hours sooner, that was the reality of it. Once I knew, I got coverage for my weekend at the hospital where I work, but found out about 2-3 hours into a 15 hour drive in the snow that he was gone...
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CarngDtr, I understand why you would want to know what to expect. My husband had dementia for 10 years; he also had atherosclerosis. He and I and his primary care physician all hoped he would die of a heart attack. We hated to think of a long, drawn-out dying process from dementia. Of course hoping doesn't make it so. He experienced considerable decline in his final year but remained lucid throughout. He was on hospice care at home for five weeks. He slept more and more and ate less and less. I offered food but did not push it. He had a nice breakfast the day he died. He went sooner than anybody expected based on his symptoms -- the hospice nurse thought he would have several more weeks. But the time he had was enough so that all of our grandchildren and other loved ones could visit him. He was never in pain. He was sometimes confused but never in a way that frightened him. He did not have hallucinations. He died holding my hand. It was a peaceful, gentle death.

I think that accepting that he was dying was tremendously helpful to me, and probably to him. No one was anxiously trying to "fix" anything, but only to keep him comfortable.
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Thank you all for sharing your experiences in response to my question. Twotonne, I now realize that my Mother's dignity is intact because I too am following her wishes. (Thank you.) She's not able to do much for herself (vascular dementia) but she still responds to love and care. Everyone - your experiences have been helpful to remind me that each day I can tell her how much I love and appreciate her, what a great mother she is and remind her of all the goodness she brought into the world. She may only remember my words for a few seconds but that will be ok. I pray that she will have a peaceful death--hopefully she will just close her eyes and even if I'm not there at that time, it will be ok. Because I will make sure to tell her how I feel while she is still here. Hugs to all of you.
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Dying with dementia is real different than dying of cancer or something else that leaves the mind more intact. Coping with severe agitation and anxiety is a common issue, and they are not "supposed to" just manage it with tons of sedating drugs, in real life, that's what may happen because many hospices are not used to that sort of thing.
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CaringDtr, what a GREAT post. That's what its all about, being with them on the journey and making sure they get treated like human beings with as much respect and kindness as possible, no matter whether confused or totally with it the whole way.
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Little rant here. Society tells us how we have to look, what to wear, and now what kind of death is "good enough!" I have read Helen Kubler-Ross, and thought it sounded great. But some people want to stay in denial right up until the last minute. That's their right.

In my limited experience, a dying person seems to be already gone long before the breathing stops. If you can be there, that's great, but as almostthere says, "Nothing in life is ever going to be perfect or work out exactly how we want it to work out." Let's not put pressure on ourselves or our loved ones to die according to any sort of rules.

End of rant.
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Thank you vstefans. Jinx4740: your rant and (this is the place to do it :) is a bit of reality check. When my Dad was so sick I envisioned him dying peacefully at home. I even thought about the music I would play for him to keep him calm. But it didn't "work out" that way He died in the hospital under less than peaceful circumstances. I've felt very badly about this for quite some time and although I realize I really had no control over the way he died, I still feel sad about it. I want Mom's death to be different but I really don't know what's in store for her/us--she's not ready for hospice yet. I do believe though that she is getting better medical care than my Dad did. (different health plan), But I understand that I won't have control over how she dies either--God has his own plan.
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I wasn't there when my dad died 12 years ago. He was only 57, just two months shy of 58. He'd been fighting colon cancer for a year and a half. The last week and a half of his life he was in ICU where he was kept sedated so I felt that I didn't really get to say good bye to him either. The decision was made to take him off the ventilator and as badly as I wanted to be there for him, I just couldn't handle it. I felt so guilty about that for the longest time. I wanted to make sure he wasn't alone when he died. But when I was there I felt like I was going crazy. At one point I wanted to throw the CD player that was going in his hospital room as hard as I could and shatter it into a million little pieces. I'm crying right now as I type this. I miss the man so much and wish he'd been able to meet my children and niece and nephew. Looking back now though, I don't think he would've wanted me there had he been able to voice his opinion. Had I been there I might've wished that I hadn't been. My mom WAS there when her mother died and she said she wished that she hadn't been there. It was hard for her. Everybody's experience is different. Just do everything you can while you still have her here. She knows you love her.
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Carngdtr, I Know nothing about your mother's condition, but I do know that they say most people get involved in hospice late, when they could have benefitted from the services earlier. If she's still pretty healthy, of course, that wouldn't apply.
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Jinx4740 -- I've heard this before and it is so true. It may be that people don't really understand what hospice is--I know at first I didn't. In the case of my Dad -- he needed hospice not a hospital and as I said before I'm still very sad about that. In the case of Mom, she is relatively healthy but has vascular dementia and needs help with all ADLs. But at this point I don't believe she is ready for hospice. She eats well, responds to love and touch, smiles a lot, speaks a little (sometimes very lucid), sometimes very quiet --so these parts of her are still here. I do know her very well and at the first indication of any significant change will work with her primary regarding hospice. He's also my primary (for the last 28 years) and in my book, he's not only competent but very compassionate. I have to trust that he will help me make the right decision.
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I am a caregiver( CNA) M y dad was dementia, alzeimers he passed away 2012 my mother was his primary caregiver , she took care of him at home was very difficult , he was angry with this disease and hard to be around at times, he also had chf and other problems . he was in a nursing facility for 6 weeks due to falling 13 times he would just forget he could not walk.This disease robs life especially at the end i have cared for dementia patients and seen the family struggles along with it.It is a disease which has stages and some go quickly others do not. My dad was one whom had to be in control of everything which made matters so much worse.. However the last few days he was here , he came to realize he was not going to get better the fluid built up from chf. he closed his eyes and went to sleep woke up in the arms of JESUS. some days he knew more then others i believe GOD knows all and he gets them through this not us we just need to LOVE and patient as much as possible try to put ourselves in their place. loss of life it seems to them i have noticed and the ones i have cared for seem to go with such peace
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Carigdtr I always envisioned my dad dying peacefully in his sleep at home. He died while visiting me and was in the hospital so he wasn't back home in Pa but here in Maryland but I am glad his last month was with me. Mom died suddenly at home in the kitchen after being on dialysis for 3 1/2 years. It is very hard not to dwell on the circumstances. My therapist is a big help.
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Thanks Charles1921-- I don't know what I would have done without my therapist who I still see every other week. As TAMMYANN said -- caring for a loved one at home can be very difficult. We need all the support we can get :) BTW TAMMYANN -- my Dad also forgot he couldn't walk so he too fell several times.too. As a result of one fall, he got a hairline fracture on his hip and was sent to the hospital for 1 week then to a nursing home for 30 days for "reahab". What was his diagnosis when admitted to the nursing home? "Alzheimers". This situation would be a whole different topic in itself--he was so unhappy for those 30 days.
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Like beecindy, I had a similar experience with my 92-year-old mother at the nursing home. She passed away on September 14, 2013 under similar circumstances.
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Stout25, My father passed away in his sleep on home hospice. I don't think we ever really feel we have had a chance to say all we wanted to to our loved ones. It sounds like your last contact with him was a positive one. His last thoughts may very well have been about that face he liked. We do the best we know how for our loved ones , which you clearly did. We get no instruction books on life or death but still have to make impossible decisions about it. You never abandoned your husband and continued to visit him. It is amazing how many people just warehouse their family members and forget about them.

My mom now has Alzheimer's and lives at home with me. I am her primary caregiver with tons of help from my sister who lives near by. There is no home hospice care for Alzheimer's unless you have tons of money. My sister and I love our mom but there are days we wish she would pass quietly in her sleep rather than suffer the devastating effects of her illness. We both feel guilty about theses thoughts and always feel we aren't doing enough. We are lucky to have support groups and counselors available to help us. Our city also has some excellent support as well such as daycare and Meals on Wheels. Family, friends, counselors, Mom's doctors all tell us how wonderful we are with our mom and should have no guilt. Those feelings of guilt still creep in, but it is probably from feeling so helpless to stop her decline. We both know we are doing an excellent job making her life as pleasant as possible.

When your husband said he liked your face that was wonderful - he was able to make a connection with you in the only way his illness would allow. You may not have been there at the end, but you were there at a very valuable moment! You are a very special person, thank you so much for sharing!
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I too am facing what many other comments of others have already experienced. The books and information already read on the subject is confirmed by your personal experiences. My husband has been in more or less of a dying disability for probably over three years now. Falling down, then to canes, then walkers, then wheelchair, and at present for a number of months now, confined to bed because of inability to walk or stand now. We missed his last doctor appointment in the doctor's office, due to fact we could not get someone to help lift him into wheel chair, then into van, then out and into doctor office and retract all of the steps to return to his home bed. His short term memory is affected greatly, but still can recall many things he knew how to do in years gone by. Just last night, he told his son that he could walk. (but he cannot) Just this a.m., I went into tears, for he addressed me from his bed, while I was in the nearby room, asking, "what are you going to do today?" I replied, probably what I do most of the days, do you remember what we did yesterday?" Of course he replied "no." I in turn asked him, what are you going to do today? "He replied, " well I am going toget up and go into the bathroom in a little bit." I knew he would not move out of the bed, for he cannot do so. My tears came for him, then I called our support person to stop in as soon as she was available, for I needed some support emotionally. My husband and I were childhood sweethearts, and our past Oct. 5 wedding anniversary amounted to 61 years of marriage. To see him going through this incontinence, bathing in bed, and all of the heart rending things going on at present, I well can relate to what many of you have already experienced. Thank you for sharing your experiences with others who need emotional support. Hugs are sent to all who need them to get through heart rending experiences of watching a loved one battle with dementia. From Joylee
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My heart goes out to you.
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i believe that dementia caused my mothers digestive system to fail. the lack of digestive activity caused sharp weight loss in the last few weeks and eventually she refused food and water and was gone in 3-4 days. with dementia any body system could shut down.
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My situation is strange. My 99 year old grandmother lives with me and is dying. She has had dementia for years;the last few horrendous.
Now as she is actively dying it is as if she is thinking again. She knows me and has said my name. I am an emotional wreck. Why can't she die with dementia, no being fully aware of her loss?
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