With the hospice I work with all patients in a facility get morphine in small doses routinely to prevent pain. It doesn't zonk them out but does keep them comfortable.
This is very interesting, bluedaze*. Do you think that most AD patients have physical pain by the time they are on hospice? Has your hospice experience (seminars and instructors) ever discussed pain in AD patients and how to evaluate it?
Only recently have we acknowledged that newborns feel pain and treat them for it. Prior care assumed that newborns did not feel pain because of their immature nervous systems. Perhaps we are having a similar discovery with AD patients and perhaps we should push for more research in AD pain.
DH had pain the last few months, and his Hospice gave me morphine. I was able to give as needed. I would just watch him and look for him holding his stomach or wincing when he moved early on. And when he was more bed ridden we gave it on a regular schedule. We suspected prostate cancer. At this point I had stopped any testing. When he passed, the nurse rounded up all meds and took an inventory and took them. With so many family members addicted to meds they must have to be careful. I actually had a family member called me a few days after DH passing to ask about his meds.
marche it is very difficult to evaluate pain, location and severity in a person with dementia. They may be rubbing their belly when their ear aches. It is my feeling that most of the elderly are in pain just because of their age. My daughter is a dementia care specialist and she stresses the need to eval for pain when a person starts 'acting out' for no apparent reason. A benefit of small dose morphine is that it reduces air hunger for those actively dying. Makes the passing more comfortable for all involved.
Maybe when they start acting up, before putting on psych drugs first they need to try pain medication. If they calm down it would lead one towards pain not psychotic although we do know psych problems are common.
I am grateful to G-d that there are providers out there like bluedaze* and her daughter! In my area there must be at least thirty hospices. Some protocol or precedent required that my husband go to a rehab facility after discharge from his final hospitalization. In any case, while he was in rehab I spent a good deal of time interviewing different hospices.
My choice was the one whose RN director spent the most time with me. I felt her compassion. For my husband's continuing care I chose a palliative care unit of an ALF. All residents were palliative care but not all were on hospice.
Before his formal admission to hospice, the ALF director, the hospice admissions social worker and dementia specialty RN met with me. Until I read it in an earlier post on this thread from elizabeth*, I had forgotten that one of his meds was Depakote and for some time the go-to was Ativan. Hospice recommended he remain on those but discontinued Respiradol.
I don't recall that morphine was specifically mentioned but it seemed to me, as Charlotte referenced, that they were very thorough in discussing how I felt about the issues of pain relief and addiction. I had no concerns about addiction. I asked that they make him as comfortable as possible (he had FTD and agitation was prominent).
I remember that the last night hospice came at about 3am. I specifically asked for as much pain relief as possible. I pointedly did not ask what or how much. All I wanted was as much peace and comfort for him as possible.
I returned to the NH this afternoon about 3 p.m., as suggested by the BSO, and found her there in his room, he in his wheelchair, she ever so gently rubbing his chest while they listened to music. He had not stopped shouting for days and nights, and here he was, almost trance-like, quietly and peacefully in a world of his own – face completely relaxed. He didn’t notice my arrival, and the BSO and I spoke softly, she giving me advice. She said he’d been very loud, ‘Aye’ Aye Aye’ing and could not be stopped. Well, she changed him over to counting (not so loud), and then just listening to music. He was still at this peaceful stage until about 6 p.m. She will be there on Monday morning, and said she’ll spend time with him until I come about 3 p.m. She’s very passionate about this, and I hope I can learn and put into practice some of what she is teaching me. He was singing softly when I left at 8:10 p.m., and some of the serenity from the day was still there when I left. I feel so hopeful that we can give him peace.
I just wanted to mention, that if you do not see me post, please do not worry. Just feeling the need to take a break right now. I believe my email is in my profile and feel welcome to write if you like. I wish you all the very best that can be gleaned this New Year, aloha, Patty
marche and marsh, Thanks for the info. about the UTI tests. I'm going to wait for a while at the suggestion of the day nurse because two things have changed: my husband has once again experienced diarrhea and loose stools and his mood has greatly improved during the last three days except when he becomes anxious about these bathroom issues. The nurse said that this intestinal problem is now prevalent and that even the unit's activities director was stricken and had to leave work yesterday morning. The nurse suggests that this sickness might be a factor in my husband's behavior. So for now, I'm going to monitor this day by day but will insist on a second test if the behavior problems reappear.
marg78, This BSO sounds like a miracle worker. I have never heard of such a person.
marg78, thank you so much for the information you've given us about the BSO rubbing your husband's chest while soft music was playing. It is something that I'll hopefully be able to use when my DH gets too agitated. God bless her for her compassion and commitment to his care and to you too for your dedication to seeing that he gets the best care possible.
Myrtle and Fiona68, This lady really cares about patients ... it seems like a vocation with her, and while it is early days yet, I have seen her break the cycle he's in (she said it's like he is stuck in a groove, and can't get out of it, so he keeps repeating the behaviour constantly). This may not be new to many of you, but it is new to me. She stands right in front of his wheelchair, looking in his eyes, trying to get his attention (many times eyes unfocused) and tries to break the cycle by saying she needs help, she can't find her purse or something along those lines ... "Where's my purse ... I can't find it" in a reasonably strong voice to get his attention, when tries to keep his attention on anything/everything for a few minutes. Or she may play music very loud to start, and say "Listen, listen ... what is that about" or so many other little things to distract him. The gentle touching on his hand, chest, shoulder, etc. in such a relaxed manner helps a lot. I have SO much to learn, but she is willing to teach me.
She said it was pure dementia. I believe he is gone mentally now, and it is heartbreaking to watch, but anything I can learn to bring a bit of peace is, in my opinion, worth it.
If anyone has had exposure to any such care it would be interesting to know.
marg78, I think it's wonderful that this woman is going to teach you her techniques. Did you ever find out what "BSO" stands for? I just think of her as a "dementia whisperer."
Myrtle, BSO stands for Behavioural Supports Ontario, a new initiative by the Ontario (Canada) Government. I must tell her that she now has the title of 'dementia whisperer" (smile). She does have a sense of humor. At one of the loudest points, she looked at me and said, did anybody tell your husband he does NOT have a singing voice. We both laughed.
Just to get through this, and let him have peace! Thanks for being so kind.
marg78, sounds like she's employing some of Teepa Snow's approaches. I had a caregiver for my husband who when he started acting up he put his hand firmly on his chest, looked him in the eye and said a firm voice "you must stay calm". To my surprise my husband's behavior deescalated immediately.
LFL - she mentioned that I can go onto Utube and find a series of Teepa Snow techniques - I'm hoping to look these up sometime today. Glad to hear that it worked for your husband.
marg, yes you tube has short clips of Teepa Snow's methods but of course they don't sow you a lot because they want to sell the tapes. I also understand that the tape quality and sound are sometimes not the best because the tapes are made during her seminars. Definitely worth a look.
Thank you so much. I live in Ontario and after reading about BSO I found their number in my area and they called me back. The co ordinatior is going to see if they can arrange for someone that Kevan can talk to. He has been asking for someone he can vent to other then staff or Dr.''s and maybe now he will have that available. I can't thank you enough.
Joan, Just saw the new photo-don't know if I should describe it as 'hot' or 'cool', or just great.
LFL, thanks for your comments on the Teepa Snow utube videos.
Jazzy, hopefully the BSO meetings will be very productive for Kevan. I feel very positive about it, but always want to temper it with not getting your hopes too high right away. Today my DH was having a day-long 'episode' - by employing a part of her technique, I was able to break the 'cycle' for a short time, but this is difficult stuff. I feel very positive about the BSO, but always want to caution that it takes a lot of time and patience. I hope this works out for Kevan and you. Best of luck!
Not productive in anyway. They will not be offering any help to us in anyway. They suggested he talk to the spiritual care person at the residence. He tried that and it was not good. So far I have been refused the mental health team to visit him and now this group. BSO here is working closely with the care group that run his LTC so I guess I can't expect any thing else. They said that the director of his LTC will be talking to his Dr. And then get back to me. I am really tired of this run-a-round. Making appointments for him to talk to someone is not good. He needs someone at short notice. I am really frustrated now.
Jazzy, So sorry that the BSO can't help Kevan and you. Don't lose hope though ... I had not heard of BSO until they got involved with Rene through the Home.
I've had to push so hard every step along the way. Don't know if I mentioned all the problems we had, and it didn't seem to be really understood - finally I began vidoetaping the crying, yelling, etc., and showed it to the doctor (who is very good). She said that each time she passed he was quiet, and thought the video was a very good idea. Also, in the past 3 weeks or so ago he has changed dramatically ... he sings (Yells!) almost constantly, and it is irritating to others. He is beyond reasoning with, and for the first time really, he got very loud, shouting at me when I told him that his singing was very noisy and upsetting to others. He said he has to 'hear' himself. He was right-handed, and now uses his left hand, etc. etc. I'm wondering if he had a small stroke, but will not subject him to another hospital visit - the last was too traumatic. Today the doctor doubled his Seroquel and has given more PRNs. Hopefully that will help. Enough said. Just hope something works out for you. Hugs back to you.
In your post about a week ago, you said your husband and the BSO person were listening to music. What format was the music on and what kind of device did she use to play it? Was it a portable CD player? I'd like to try this with my husband but all I have to bring in is an ipod and that won't allow both of us to listen.
I'm not in Canada and have no experience with BSO. My comment is that when my husband was in an ALF I used the Amazon Kindle Fire to play music for him. It was very easy to download selections from the cloud to the device. To make it easier for him I put together some playlists; not too many, maybe half a dozen but probably with enough selections to last an hour each. I encouraged the aides to use it as well.
I also put a soft case on it. Although the flooring was carpet it did sometimes fall from his bed or chair to the floor and it would keep playing. Concerning my husband, I don't think he would have been able to handle the process of removing a cd from casing, properly place it and then navigate the controls. Also, the cd/dvd player I have was heavier than the Kindle and I think would have been more difficult for him to grasp.
I brought in a small radio/CD combination player. It holds one cassette at a time, is very easy to put in and they just have to push the CD button and it's on. It plays the CD twice and then shuts off. He can't do it himself but the aide puts it in for him. They followed my suggestion and do this when he is agitated and before he goes to sleep. Otherwise, they have a hard time getting him to go to sleep. Cookies and music always seem to be a huge help to settle him down.
Hi abby* and Bev, Thanks for that information. It's just what I needed to know. I'm not in Canada, either, so I'm planning to establish my own one-woman BSNE (Behavioral Services New England!). I'm going to look into both of the options you suggested and organize a playlist or group of CDs for him.
I started to think about my husband's agitation in the last few months and several things occurred to me. One is that he was NEVER a couch potato. His normal life was to be outdoors a lot, whether walking around the yard, moving stuff around in the shed, shoveling snow, etc. Even when he was indoors, he was very active, cooking up meals or moving stuff in the basement or garage, etc. He also loved many kinds of music -- jazz, country, opera, classical, rock, etc. -- and listened to it a lot, mostly on the radio. When he was in the day care program, the nurses there said he moved around a lot; they had to give him "jobs" to do to keep him busy. Even though the facility he's in has structured activities every weekday, I don't think that's enough for him.
After he was admitted in May, I would take him for rides almost every day or we would walk around the paths on the grounds. This has been an unusually dark and cold winter and since mid-October, when it started to get dark early, we have rarely gone out for rides. This afternoon was sunny so I took him for a ride for almost an hour and played a CD. He seemed to enjoy it and hummed along with the music. From now on, I'm going to try to take him out for a ride whenever the roads are dry and the sky is reasonably bright. If I can't take him out, we'll go to a quiet place indoors and I'll play some music for him. I'll be curious to see how this works.
Hi Myrtle, Abby, Bev, Marsh, Just got home. Myrtle, I took the machine we had at home to the NH. It can play 5 CDS consecutively, but I have only played one at a time, and changed manually. It also take a UBS stick which can hold hours of music. DH has no concept now of how to use most anything now, but because of the behaviour (loud singing - actually it's like a mantra) the staff turn the music on for him first thing in the morning. I don't know what we would do without it. I also have added his favourite music - lots of it.
The BSOs are off for the weekend, so I went in today to feed him at lunchtime. The BSOs had asked me to delay coming in until about 3 p.m. when they are on duty. Staff said he was singing a lot in the morning so they gave him a PRN. Fortunately this afternoon went well. When he started singing, I would ask him to help me because I'd lost my purse, or told him the lady next door was 100 years old (not!), and he would be disturbing her. Those things stopped him for a minute or two, then he'd forget and begin again, so I tried the music all afternoon. It is SO difficult to distract him, but it worked very well until after suppertime . He got angry when I tried to change the subject or distract him - he told me I was talking too much, and he had to sing because he couldn't do anything else, and he needed to hear himself. Like your husband, Myrtle, he was always fit and very active.
Because he's in a wheelchair and now needs the big lift for moving, I can't think of anything else for him to do.
I hope, Myrtle that it works for your husband, and anyone else who tries it. At this point, though, it is so draining, and I believe they will increase or do something further about his meds. I wish that we would be as fortunate as Tim, and have him escape from this torture.
Hi marsh, they do that at the veteran's home, too, but only during the structured activity hours and not every day. They lock the ipods in a cabinet after use and only the activities director has access to them. I don't have a problem with that -- I don't want to be responsible for 25 ipods! -- but I think my husband needs more music than that. About once a week, they have live musicians perform in the unit and the staff tells me that a lot of times, he twirls around and dances to the music. So I'm going to get him more music. What's kind of odd about our situation is that my own taste in music is rather parochial and in fact, I'm not much of a music lover. He is the opposite. Today, by mistake, I chose a jazz CD to play in the car. I found it jangly and discordant and if I had been alone I would have turned it off. But he really liked it and hummed along. . . . (How can you hum to jazz?)
Myrtle, Tim had an IPOD absolutely loaded with music. He used it when he walked. When he could no longer walk on his own, I would set him up with it when he sat out on the covered porch or deck. He dearly loved his music! One day while in a drugstore I noticed a speaker for an IPOd on a clearance table. It was 75% off. I bought it thinking it might work since he was unable to reinsert the earbuds if they fell out. It was the best 12 dollars I ever spent!!! No more frustrating earbuds. The IPOd just sits on top of the charging connection and I plugged it in. It played with pretty good sound and kept it charged too. When I got the call last Friday of his dramatic change, I grabbed his IPOd and the speaker and took off. I was desperately afraid he would be gone by the time I got there. It was a 25 min drive. When I arrived I plugged it in and selected his favorite genre...southern gospal music. I placed it on a table near his head and then scooted him over and climbed into bed with him. I'm sure you could find one through Amazon. If not, let me know where I can send it. I truly appreciate the ministry of music and I would love to gift it to you. I don't expect you to publish your address. Just pick a place where I can send it and you could trust it would get to you.
And, one more observation that I made with my Tim. He was always pleasant and manageable. He was only in long term care for 3 months. They fell in love with him as he was so easygoing. He possessed the spiritual gift of encouragement. He still was able to use that with the staff and fellow residents even tho he was unaware of doing so. It truly was just his nature. Well, in the last month, he started to become agitated. Only slightly at first. For the first 2 weeks I was able to diffuse him via a phone call. It continued to escalate until even when I was there I had a great deal of difficulty calming him. He was medically cleared. Nothing physically wrong that we could determine. He began to tell me that he "can tell I am getting worse. It is scaring me. I feel like I am going to die". He would just rub his head as if trying to clear it. Trying to see beyond the tangles that were clouding his brain. As if it was driving him to madness! Eventually, of course, they had to ship him out to the geripsych unit. I am convinced that the agitation was AD unleashing its final attack. He never recovered. It was almost as if it was some kind of "terminal" agitation. I have seen the term terminal pacing here. Well his was terminal agitation (my term....not medical). Once again, he was medically cleared at the hospital. We could not find any medical reason for his behavior from lab work or scans. Hense, the reason I litterally begged for a Hospice consult. It was such a blessing to see him at peace thanks to them and the meds it took to get him relief. All this to say...if your loved one suddenly has this type of behavior that is completely out of character for him/her it could be the disease launching its last and most powerful attack. Praying you all have a tolerable, not so bad, day!
Hi Aunt B, You are so thoughtful. And yes, the earbuds are a problem. Thank you so much for your suggestion and also for your kind offer, especially in your time of bereavement. It never occurred to me to look for a speaker for the ipod. I'm going to investigate that tomorrow. I will let you know what I find. I suspect that I will find one, since our world seems to be awash with electronic gadgets. It's hard to keep track of all the things that are available.
What you experienced with Tim is very interesting - I think you may be right about the disease just taking over. I am so glad that you were alerted to the change in his condition and were able to get there in time to play his favorite music and to comfort him. Thank you for sharing that story.
This afternoon I took my wife to a music presentation of songs from Gilbert & Sullivan's "Yeoman of the Guard". They are doing a full production in 3 weeks, which I will be going to, but won't be able to take DW. We have been G&S addicts, having seen every show except one (Utopia Limited). She really enjoyed the music.
Look due west just after the sun sets and you'll see a bright star following it down the horizon. That's Venus.
Venus is about a third of the distance to the Sun from here so it's always hanging around the sun from our point of view. Don't look until the sun has disappeared over the horizon (because looking into the sun's a very bad thing to do as everyone knows) and take a look at how bright that thing is. That rock out there is roughly our twin.
If you look again within a half hour or so you'll see it followed the sun down. Actually the sun is sitting still and doesn't rise or set at all. We just spin in an easterly direction so when we come around again it looks like the sun is rising from there. We all know that but once in a while getting a sense of wonder about what this place is doesn't hurt.
Take for instance the grand comedy of the Americas. Which used to be full of Indians. Who weren't Indians because when Columbus came there was a continent in the way that blocked the eastern route to the rich trade that was the reason for the brave voyage. Isabella wasn't impressed with corn at first. Most centuries are dominated by a single or several commodities. This century it's oil. Then it was salt and spices which with no refrigerators became highly prized and valuable. That's why there are so many antique boxes and cabinets with locks. You locked up the salt and spices because they were very expensive. Thus Columbus who wasn't trusted without a good navigator and they were all Portuguese. This one was named Amerigo Vespucci I think is the spelling and he was ambitious but it's in dispute whether Amerigo named America.
What we do know for certain without ever being there was that Columbus landed on different shores of the carribean trying to find an Indian he could trade for spices like pepper. The local Carib tribes must have wondered what on earth they were trying to communicate. Even if north and south america weren't still barely joined, Columbus would have had the mother of all oceans ahead of him before he got anywhere near Calcutta. The Greeks could have told him that almost two thousand years earlier. They were such practical darlings. They measured the exact time the sun went to the bottom of a known well and waved to another group a known distance away who measured the angle of the sun doing down that well at the exact same time. Using geometry which I believe they also invented, they got the circumference of the earth quite closely. Columbus, Isabella, and Amerigo were betting on that and off went the Nina, the Pinta, and the who cares to find spices but actually to change history and go to the moon which isn't a planet but it is a rock in space which is where I came in.
Last night I was reading the February issue of Good Housekeeping. On the "from the editor" page, I found this: "A regular topic with my girlfriends: the stress of finding a new favorite pair of jeans. And should we roll the cuffs? Tuck them in?"
Can she be serious? Do some people actually consider finding a pair of jeans stressful? No wonder I sometimes feel like an alien when I'm out among "normal" people. Do they even know what true stress is? Evidently not.
One can only hope that the editor was kidding. (I would say that dark wash, skinny jeans with a lot of stretch are the way to go. I would never roll the cuffs, and I don't tuck my jeans in. I worry about Alzheimer's issues a lot, but have to say that AD stress is nothing…and I do mean nothing…compared to the stress of finding that perfect pair of jeans.) NOT!! Hahahahahahahahaha.
Jeans? What are jeans? Oh, do you mean those denim things I wore about three lives ago? Based on what Jan K reported, I thought that maybe the LHJ had restyled itself for twenty-somethings, but I looked up the demographics of the magazine I saw that the average age of the readers is 56.
Update on Jasmine: hb is taking her out more. He has to know where she is all the time - doesn't like her out of sight even in the house. We have had a couple accidents - still trying to figure a way so she will let us know when she needs to go out. I am taking her out for her walk somewhere between 11 and midnight. I am starting to sleep in until 8 or later and she seems to have no problem waiting that long. I have a pee pad down but she has never used - peed in a different place. She continues to give us laughs, love and of course exercise. She loves going to the ball fields across the road. She can be off leash and runs. We will put space between the two of us and let her run back and forth between us. I didn't realize I was so out of shape until I tried to run with her. But, I am getting faster and it is getting easier.
In November I was considering upping my wellbutrin but now I have her and don't feel the need at the moment.
I came across this on the net (copy it's ok to copy it here)
A Train Ride allegory of Alzheimzer's disease..
A nurse at a senior living facility showed me and family members this short story of what Alzheimer's patients experience on their sad journey. Thought some of you may appreciate it.
An Alzheimer’s Allegory
THE TRAIN JOURNEY
Imagine going on a long journey by train. As we leave the landscape looks familiar and as we progress, things begin to look different. The buildings have odd shapes and the trees don’t look quite the way you remember them. Maybe it’s a different country with different architecture and plant life. It feels a bit strange even unnerving.
You decide to ask the other passengers about the strangeness you feel, but notice they seem unperturbed. You wonder if your mind is paying tricks on you. You decide to act as if everything looks all right, but because it does not, you have to be on your guard. This places you under some tension, but you believe you can tolerate it for the rest of the trip. However, out on this journey you don’t know you can’t go back, or when it will end. When you ask them to tell me where the train is you find yourself becoming so preoccupied with appearing all right that you are distracted and don’t notice the passing scenery.
After some time you look out the window again and this time you know something is wrong. Everything looks strange and unfamiliar. There is no similarity to anything you can recall from the past. You think that you must do something and try to talk to the other passengers about the strangeness you feel but they look at you dumbfounded. They talk in a new language. You wonder why they are not talking in English. They look at you knowingly and with sympathy. You want to know what is going on, so you keep after them trying to get them to tell you where the train is going. The only answers you get are in a strange language, and then even when you talk, your words sound strange to you. Now you are truly frightened.
You realize that you are going to have to get of this train and find your own way home and then you get up to leave. You don’t get very far as the other passenger’s stop you and take you back to you seat. It seems that they want you to stay on the train whether you like it or not. You try to explain but they just talk in a strange language.
You realize that you will never find your way home if you don’t get off that train. You get ready to jump when hands suddenly appear from nowhere and grab you from behind. You try to fight them off, but you feel them pulling you back onto the train. You will never get home.
How sad you feel. You did not say goodbye to your friends or your children. The passengers look sympathetic, but they do not know how sad you feel. Maybe if they knew they would let you off the train.
You have no choice now. You have to go along with the passengers because they seem to know where the journey will end. Maybe they will get you there safely. You wish that you had never started out on this journey but know you cannot go back.
marg78, The Train Ride allegory descries the Alzheimer's journey so perfectly....so sad that our loved ones are feeling this fear and anguish as they progress on their unplanned travels.
Marg78, that train story hurt me to read it. Watching her lose the things she was and the sureness of her demenour through the fear of what will happen to her into the expanding vacancy is all hot coals in my stomach and will be for a very long time.
Her physical death will never be where the pain is because aside from eating minced food she has nothing and no prospect. She died in all those pieces and her experience of that no doubt was something like that train story. That's the part that really rips me up.
The price we all pay for dementia is very high. I talked to my sister yesterday. I told her I worry sometimes what I will do when I'm seriously ill and I really didn't know the answer. I was starting to say that every single person has to cope with that when she interrupted me and let me know in no uncertain terms that I will then be staying with her and she will help me. Wow.
I pulled out my Grumpy Old Men CD. I watched and listened to it about 10 times last year. It plays on my computer while I paint and I follow along and polish my knowledge of all the lines. Last year some of the scenes were harder to go though and this year I didn't notice that until I came to a line that never bothered me before but hit me hard and made tears stream down so I had to put the paintbrush down and get a tissue.
"Can I come in?" Walter asks standing at the door. And I know that hope so well where I can visit but I cannot come in. That was two or three days ago. Then yesterday my sister let me know that I can not only come in but that she will come and get me.
That's me on a train too. And the other passengers have ideas about things too. But I know better because I know what everyone will do when the chips come down hard - they will run. Including my sister. They're not bad people. It's me that's changed. Wherever I'm going, it's not where I've been and I know that's not words, it's the truth.
"Can I come in?" Not until I let myself in first. And how do I do that? I open my heart to the puppy even though he pees and makes mistakes. And suddenly I'm on the other side of the door. My heart is the key.
Wolf, I am sorry that I opened wounds that are so painful, and I do understand your pain. We all deal differently with our situation, and while I can understand where you are coming from, for me, to not go daily to see my husband is something that is even more painful for me.
Today I arrived at 1:00 p.m., and saw that they had put my husband in a large sitting room beside a lady (Mary) who is much older, and who is ‘out of it’ and hums all the time. Fortunately for her, her son comes at lunch each day to feed her, and is attentive.
When I saw my husband and Mary sitting, looking outside, both unseeing, it was painful. I walked up in front of his chair, and cheerfully said “Hi”. Tears came to his eyes as he ‘recognized’ me … not as his wife, but as someone very familiar, and he said “I am so happy to see you”! I felt like I was beside him on the train, and could witness his confusion and relief that someone was there for him.
I mentioned previously that he has lost his English, and mostly speaks in his own language … usually singing. He has such difficulty expressing himself, but many times sings in his own language, “You are so good to me … you are the best …”, and always “Aye Aye, Aye, and ending with heim “home”, and he always said I must go with him. He does not know where home is, but in his songs sometimes, in his native language says” “I’m never going home”, somehow realizing that he’s ‘on the train’.
You express yourself so eloquently Wolf,, something I cannot do, but I hope you understand what I am trying to express.
Bottom line, I understand your pain for your Dianne and all that you both have lost.
Wolf: "Hot coals in my stomach"... That says so much for all of us! Your ability to express into words describes what so many of our hearts are feeling.
marg78: " I'm so glad your here" is what my husband always said to me when I arrived. He looked so lost among the elderly folks that were clustered around him. He did not belong there. He looked so out of place as a man of 61 yes old. I couldn't physically get to him fast enough to "rescue" him from his place on the train. The first thing I did was to wheel him away from everyone else that "belonged" there (the old people) to the privacy of a quiet place where we could just be a couple again. I always felt like I was abandoning him when I left.
Aunt B We think alike - I do exactly the same - take him to his room and listen to music, shave him, etc. etc., just giving the gentle things that make him peaceful. Last evening after supper I was sitting beside his tilted wheelchair, gently stroking his hair and chest. I asked if he liked it, and he said it was like 'home'. Sorry that your husband was so young - that is even more devastating.