A new year, a new puppy to bring laughter and joy to my heart. It has not worked out how I thought - Art taking her out in daylight owurs. She pees then wants to come in. I won't let her - make her walk until she poops. When he does go take her out he either forgets to leash her or can't figure out how to put her coat on her then the harness or collar. I stay up to take her out at midnight - it is cold but when the wind is not blowing nice walking. The moon is bright and the stars are shining! When the wind is blowing not so good. I tell her she can't go in until she poops. We actually have a routing route we take. We live almost in the middle of the park and it takes until we get to the end before she does poop. She hates the grass so walks the road (it is behind the park) until she has to go then jumps up on the grass to go, then back to the road. I guess coming from LA she must be a city girl!! Tuesday night I took her out early - 11pm - and she didn't poop. In the morning I got woke up at 6 with the smell. Decided I would wait to take her out. At 8:30 as I was getting my shoes on she peed on the rug. Lesson learned - stay to routine. Woke up at 6am this morning, debated whether to take her out and decided to. She did her duties and ran under the covers when we got back!!
I am getting use to having to stay up until midnight and getting up in the morning. It is hard but she is starting to play with me and that is good. She is slow to warm up to the neighbors little dog (they look alike just different colors). Roudy (a girl) wants to play with her and they are getting closer. We walked down to the ballpark the other day with Roudy and some other people in the park came down with their border collie. Gracie loves hb and she loved Jasmine. Before we knew it they were chasing each other. Gracie is not territorial like Roudy which may be the reason why.
So that is how the new year has started.
My only wish for the year is that hb is taken in his sleep so neither him nor me has to endure this disease any longer.
Charlotte enjoy the puppy. They sure are fun. Injail, please be careful, I was up all last night worried about you. I feel you are not safe. Worried about the puppy to, he could kill it with a kick in the right place. You need to find a safe place to go to.
Joan's blog got me pondering about the power of negative thinking. After a six-month "honeymoon" period in LTC, my husband has started to act up almost every day. This behavior is so unusual for him that the nursing staff suspected he had a UTI. When I walked in tonight, the nurse told me that the urine test had come back negative. I said, "Oh no! I hoped he had a UTI." At first she looked shocked. Then she started to laugh and agreed that if the test had been positive, at least we'd know what caused the behavior issues and would be able to treat the infection.
But sadly, I had no say in the matter. It reminds me of the old saying, "If wishes were horses, beggars would ride."
Myrtle, I think it was Divvi who has observed that you can have a false negative for a UTI - you need a second at least. Her husband was prone to UIT,'s and she had a lot of experience. They always came back positive .
Myrtle, maybe there is some other kind of infectious process going on. It doesn't necessarily have to be a UTI, although that is very common and the one we tend to think of. My husband had a big alteration in mental status in 2011…it turned out that he had pneumonia.
My DH does well for a time then he gets something in his head and is back as the bad behaviour boy again. We went through a bad time for awhile before Christmas then he settled down now he is just over another upset. We have no idea why this happens. The Director of Care and I had a long talk this week and she says it often happens to them as part of the progression of the disease. They do regular testing to make sure blood and urine are alright so we know it's not that so I just have to accept the progression theory.
Myrtle...my hubs was admitted to LTC almost 3 months ago. For the past 2-3 weeks his agitation level has been escalating. This is totally new for him too. He has been medically cleared and was admitted last night to a geripsych unit. I think it is just the progression of his disease. His frustration level is just maxed out as he continues to lose the ability to do anything independently. Even walking on his own is prohibited as his balance is so poor that he has had multiple falls. He feels like a prisoner in his wheelchair. I agree with Jazzy that it is just part of the "normal progression". It doesn't help any that he is only 61, very fit and oh so aware of the decline and limitations placed upon him. I just wish he would progress to a state of unawareness because this is just so heart wrenching! Gotta get ready to gather a few changes of clothes for him and head that way. It just never ends!!!
Aunt B. My husbands agitation has increased too. Since thanksgiving he has had 4 falls one of which sent him to the ER. He is not sleeping and up most of the night pacing. If he sleeps 2 hours at night it is a lot. I called the doctor yesterday and they are going to try trazadone. I read on this site that it has helped to calm them down. Like your husband my husband is aware of what is happening to him. I guess I can be grateful he is not belligerent or totally out of control. Yes I too hope he becomes unaware. I pray each day for a speedy end to this. He is 76 and has a host of other issues. The nurse practitioner told he "he is a very sick man." Honestly I am surprised he is still here. When i suggested for him to use a walker the nurse practitioner told me it will not do him any good because he will not "remember" how to use it. We will get through this together
My husband seems to have changed dramatically over the past few weeks. He cries, and keeps asking ... Why can't I speak anymore, why can't I walk, why can I do nothing. I need to go home with you, Get me out of here, Please help me, This place is not right for me, Please take me with you ... and he repeats this all day and evening long. Before I arrive He cries, yells and sings, and keeps asking where I am. I arrive about 11:30 a.m. This is totally different from his normal behaviour as he was always polite, quiet, etc.. I asked for a test for UTI. It is frightening to think the disease could escalate so quickly, and hopefully it is a UTI. There is other resident in the unit - she was a teacher, gentle, very nice - her dementia seemed to change and within 2 weeks she has become a different person. It is heartbreaking to see her decline.
Thank you, Mary, for suggesting that if the first test is negative, to request another.
Thanks, everyone, for your suggestions. I'm going to ask the nurse to order another test for a UTI and will also ask that they consider other possible infections.
I also wonder whether this behavior might be due to lack of physical activity because it coincides with the shortening of days, the end of daylight savings time, and the coming of cold weather. Like Aunt B's husband, my husband is very fit and was always physically active. This summer and early fall, I would take him for a ride after supper but now it's dark at 4:30, so we don't do that anymore, and he does not have much of an outlet for his energy. Yesterday, he was agitated in the afternoon and when I got there after supper he was starting to get agitated again. I took him to the rec room where Karaoke practice was starting and he calmed down and clapped along with the music. I'm going to take him out for a ride this afternoon in the hope that it will tire him out.
Maybe all this is wishful thinking and it's just the progression of the disease. Who knows what's going on in his brain?
My Larry had an excruciatingly long, slow decline over 14 years, from 2000 to 2014. But there were two specific times when there was a very marked, dramatic downturn. The first was in the spring of 2011, when he had the pneumonia…but it was accompanied by a huge decline in mental status and mobility--he was hospitalized for a week, then in Rehab for six weeks. When he came home, he was on the walker,(which he could not remember to use, so held onto furniture a lot, and also had some falls), and was only left alone for short periods of an hour or so. That was when I started having full-time aides for him while I continued to work, but I could still leave him in front of the TV on weekends to run out and get my hair cut or to do a quick grocery shopping. Then of course Apr. 14, 2014, was the nuclear holocaust Alzheimer's sudden deterioration, where he fell three times, was totally disoriented, ended up in the hospital for a week--all testing negative, and they just said it was Alzheimer's catching up with him--Rehab. for three weeks---home May 10, 2014 with the in-home Hospice referral…all kinds of day and night agitation,restlessness, sleeplessness, yelling for hours on end, repeating and begging incessantly in the evenings to "go home", didn't remember who I was and called me by his sister's name for weeks, incontinence with lots of poop patrols and constant bathroom cleaning, falls, combativeness---end-stage Alzheimers hell until he just seemed to fall apart completely the week before he died--slumped and not really interacting--we put him to bed, he wouldnt/couldn't 'eat or drink for the last five days, went comatose on us, slipped into a deep coma…peacefully stopped breathing on Sept. 2 around 3pm.
So I guess my point is that you go along and everything is pretty much the same, or at least the downward decline is subtle and gradual. Then at certain points the Alzheimers kicks in with a vengeance and you have some big, precipitous declines. At least that was my experience.
Myrtle, I wondered about your comment "But sadly, I had no say in the matter". You do have a say in the matter. You are still your husband's caregiver, just in a different way. You have "hired" the LTC to help you with his care, and as such you still have a major say in what goes on and how they care for him.
Oh marsh, thank you, but I did not mean that I had no say in my husband's care. I meant that I had no say in whether he actually has a UTI or not (anymore than I have any say in whether his disease progresses quickly or whether he dies sooner rather than later, which was a subject of discussion on another thread). I was just pointing to the futility of wishing for things that we have no control over.
I haven't seen anyone mention giving Abilify for anger, aggression and generally obnoxious behavior. My DH was on it for the last year of his life. That was in addition to the antidepressant Celexa. His nurologist prescribed 10 mg at first , then 20 mg. None of the other drugs calmed him down but the Abilify really did the job.
Part 1 When I went to see my husband after lunch, the CNA told me that he had diarrhea and did not make it to the bathroom and that they had just finished cleaning him up. She said he was very embarrassed. (He is fully continent.) He was glad to see me but when he heard the aide talking about this incident he started to cry dramatically, like a child. I took him to the recreation room where a singing group was about to perform. He seemed to have a period of semi-lucidity and told me about the incident, explaining that he couldn’t do anything to stop it and he started to cry again. We sat down with another couple who we’ve gotten to know. The other man (Dave) is a younger resident – mid-60s – who is physically impaired but not cognitively impaired. Dave told my husband that he had been in the Air Force and my husband, who long ago forgot he was ever in the service, told Dave that he had been in the Air Force, too. He asked Dave if he had flown planes and when Dave said he had been in the motor pool, my husband said that he had, too, as well as doing other things. This is the most lucid conversation I have heard from him in a long time. When the music started, he cheered up and tapped his foot to the beat.
Part 2 It started snowing earlier than predicted. I took the old 2-lane U.S. route instead of the Interstate because I thought it was safer. A van sailed out of a side street without slowing down and smashed into me. My car spun and slammed straight into a stone retaining wall. The other driver came over and after learning that I was OK, told me he did not have a driver’s license. I could not see his license plate so I tried to follow him back to his van but I could not get out of my car because the door was jammed shut. He took off without my getting his plate number. The police arrived and first said that my car was not safe to drive but when they learned the tow truck would not arrive for an hour, they decided it was safe. I drove home with my flashers on and crawled out through the passenger door. The front corner of my car on the driver’s side was demolished. I am not hurt at all, just shaken up. Typing this has helped me to decompress. I now need to attend to my husband’s laundry. Ugh.
Oh Myrtle, I am so grateful you made it home. I can only imaging how upsetting the whole thing must have been. I live in Ohio and it is raining today and they are calling for freezing rain, in which case I will not go out. I visited my husband today too and they started him on trazodone to see if it will help him sleep through the night and help prevent the nighttime falls. He has fallen 4 x since Thanksgiving. He seemed to know who I was --that I am someone familiar but does not say I am his wife. Anyway he was less agitated and fell asleep on the bed while I was there. He does seem less agitated so I guess that is a good thing. He had some hallucinations today which is new and starting telling me "about the woman over there" as he was pointing in the direction of the wall. Go figure.
Myrtle, I'm sorry to hear about what happened today. I'd write more sense, but I've this virus that is rampant in Vancouver, some mutation that isn't covered by this year's flu shot, and I'm still running to the bathroom (2nd day). Went to Emergency last night and was given 1000 cc. of normal saline for dehydration. I wonder if this is what your husband has? Might explain the mental confusion he had (that they checked for UTI) and the diarrhea. I think it is a variation of the H3N2 virus, but believe me, I'm pretty confused from the loss of fluids etc. that I could be misquoting all over the place. As far as the accident goes, I was in a bad one a couple of years ago, and there's nothing to be done accept the bad luck.. Not easy though. As a nurse, I know you'll be careful handling your DH's laundry - this virus in Vancouver is highly contagious. Ten times the average number of flu cases this year. I wore a mask in Emergency last night. What a zoo that is on a Friday night with all the drunks and fisticuffs. Midnight to 5 - I was glad to get home. Much rambling but just wanted you to know we care what happens to you.
Dear Myrtle, I, too, am very sorry to hear about your accident, but thankfully you are not hurt. Mary 75, my DHs Home is also rampant with two types of virus, and the PSWs and RPNs are run off their feet, because so many are confined to bed, needing to be fed, many quite sick. I hope you recover quickly. I found out today that my DH has a UTI, and I'm thankful it is not worse.
Thanks, everyone. Instead of getting started on the laundry, I sat down with a cup of Swiss Miss an am now more relaxed.
Mary75*, It did not occur to me that I might catch something by handling the laundry. Thank you for the warning. I'll use plastic gloves when I tackle the laundry. The nurse in the unit told me that this problem was "going around." So it must be contagious, and maybe it explains some of my husband's behavior problems. What you have sounds vicious. I'm so glad you are a nurse and sensible about these things. A close friend of mine had H1N1 in 2009 and died of cardiac arrest. As it turned out, she had become dehydrated.
CO2, I'll be interested to hear if the trazadone helps your husband. I don't know if it's helping my husband yet and with all the other excitement, I forgot to ask today.
marg78, Well, that UTI probably explains your husband's odd behavior. I hope that he returns to his old self after a course of antibiotics.
Myrtle, I am so glad you weren't hurt. What an experience--and now you have all the aggravation of getting the car fixed. I tend to agree with Mary that your husband may have picked up a "bug" and that would sure explain the changes in mental status and the uncontrollable diarrhea. What a day the two of you have had--you both will be in my prayers tonight.
And Mary75, you are also in my thoughts and prayers. It sounds as if you are having a miserable time. What a horrible virus.
Myrtle - so glad it was only your car that was badly hurt.I am sure as the night goes on and tomorrow you will feel it more. If you have any valerian root, take it now. When my husband was rear ended and then pushed into the truck in front, he had mild whiplash. Gave him valerian root and the next day his neck was fine. He had gotten whiplash in 1971 that took weeks to go away.
Hope you get a good night sleep and not the bug. Yes Mary75 - Washington state also has the epidemic going on with the mutated virus that the shot does not cover. I don't get flu shots but hb does. I try to stay away from people and make sure I take my antioxidants. So far over the years it has worked even when I was around my sick grandkids.
When I read about your friend dying of cardia arrest, I didn't feel so foolish about going to Emerg. last night. I'll be 85 next month and know that Seniors can run into danger if they become dehydrated. I tried a small amount of banana, applesauce and rice, plus the clear chicken broth and clear tea for supper tonight — so far, so good. My UBC class starts on Thursday, and I'm looking forward to seeing my classmates again. It's a short fiction Creative Writing class. Last semester, I learned a lot, wrote two short stories, and now aim for a collection of them. Fewer mistakes typing this — I must be feeling better.
Wow, sounds as if the year has started off on the wrong foot for many here.
Myrtle, I hope you are ok after the accident - some extra grieve you certainly didn't need.
Mary75, take good care of yourself - hope you are on the road to recovery. The class sound really interesting - have fun. What kind of short stories did you write?
Jazzy, AuntB, marg78 and CO2 - hopefully things will improve for your husbands.
Charlotte, I wanted to wish you lots of fun with your new little friend.
Moon, I'm still feeling punk so will only answer briefly: the short stories are usually an assignment based on something discussed in a lecture. For example, we were asked to write a short piece, "flash fiction," and still incorporate character, plot, conflict in 2-3 scenes. It's harder to do than a longer piece, but you do learn to make every word count. Getting the idea is the hardest part for me. Learning the technique to develop the idea helped a lot.
I believe the variant of flu thats goinground was what took my dear husband. Symptoms of flu and even with round of antibiotics he just couldnt pull thru it. Of course in end stages his immune system was also compromised. Please watch for signs of illness and get them under dr care asap - what i believe if one suspects uti then ask for a urine culture be done for a few days. My dh had negative outcome only til 4th day did bacteria show up on the cultures. Divvi*
Norovirus or one of its relatives is going through the ALF. Bitter cold and snow are moving in. I think I might just step back into 2014 for a bit; the New Year is not off to a good start.
myrtle, so sorry about the accident, just one more thing you have to do now, get your car fixed. And I'm happy you weren't hurt. I'm in western NJ and the weather was pretty nasty that day with hail, snow and freezing rain.
Mary75*, hope you're feeling better. Many years ago my father got the flu and had to be hospitalized so it's always better to be overly cautious. I just hate going to the ER, seems like it takes 6 or more hours each time we've taken DH.
divvi*, thanks for reminding us to be vigilent about any infection because of the compromised immune system. Glad to see you posting.
A question for the medical professionals on this site:
As suggested by mary75* and others, I asked the nurse at my husband's LTC facility to do a second urine test for a UTI. The nurse I talked to said it would not do any good because the accuracy of the first test was without question. She said (at least this is how I heard it) that the lab is right there in the facility and the method they use to test the sample leaves no room for error. Can this possibly be true? This was a phone conversation, since I did not have a car then, so I could have gotten the details confused, but I am positive that she said there could be no doubt about the accuracy. I would like to push this issue but I'm fairly ignorant about this sort of thing and would like to get more information first.
Any time anyone says that there is no room for error, be very suspicious. There are no absolutes in life except death.
The only way they can get a true urine specimen is to catheterize, and even then contamination is possible but less likely. If your husband was catheterized, had a neg urine culture, and continues to have problems that may be caused by a urinary tract infection, then the next step is to get a second urine culture. Sometimes the first culture just doesn't grow the bugs. If the nurse is insistent, then ask for a word with the doctor who ordered the test.
Today I was told that my husband did not have a UTI. He was put on antibiotics a few days ago for it.
His behaviour has so changed in the past few weeks. He began singing/counting and yelling loudly, and seemed to be zoned out. I have spent a lot of time with him every day, and an RPN suggested that he won’t adjust because I’m there so much. So, today, for the first time, I stayed home and tried to catch up on paperwork, housekeeping, etc. I phoned the RPN after breakfast, asking how he was. She said he was loud all night and all day today, but if she needed me, she would call. I asked to be advised how the day went, and got a call tonight to say that he was not singing or counting, but yelling all day long, and could not be consoled.
They had some special nurses sit with him (something new), and an RN fed him tonight. They think it may be his Alzheimer’s progressing. It is so out of character for the person he was. Tomorrow the doctor will be in, and I will ask for another test for UTI. He is on Resperidone (I believe it is 1mg.x 2?), Mirtazapine 45 mg. for sleeping (and he is not sleeping), Sertraline 100 mg., Gabapentin 1200 mg. per day for pain, the max of Tylenol daily, and now Tamiflu because of the respiratory and intestinal flu that are all through the NH. I will also ask the doctor (she’s caring) that I would like him to be happy and lucid, but if that’s not possible, I can handle it if he is more medicated, and not in such emotional pain, fear and uncertainty.
Larry did that same yelling for hours on end. It was a nightmare, needless to say. They kept increasing and/or changing around the dosages of Seroquel and Ativan…finally started adding some Depakote…nothing was very effective until they finally started him on a little morphine--but that was just six days before he died. In my opinion, they wasted a lot of time not listening to me when I said the Seroquel was not effective. He was on Hospice at home, of course, not in a facility…so they were medicating him based on what I was telling them rather than on their own observations. And he was never seen by the Hospice MD…who was prescribing based on what the Hospice nurses were telling him. Hospice is a very good organization in many ways, but as I told them, their two weaknesses were the medication management and the fact that they could only give him an aide for one hour, five days a week.
Anyway, as a nurse who's seen a lot of UTI's over the years, I agree with the advice upthread that nothing is absolute and that there's no reason not to send another urine specimen to the lab, if the patient is still exhibiting symptoms. Maybe there were not enough bacteria to show up in the first test, maybe there was lab error…who knows. Talk to the doctor.
Thanks marche and elizabeth, That's what I thought but now that you have explained the logic and given me the vocabulary, I'll request that a second urine specimen be tested. (The phone conversation I described above was more of an inquiry but I'll make this one a formal request.)
We have sometimes talked about why living with dementia is different from or worse than living other terminal illnesses. I have always thought that two of the biggest factors were that dementia lasts so long and that it forces us to live in a world of insanity. But in thinking about what marg78 just wrote, it occurs to me that another thing that distinguishes it from many other diseases is the medical profession's inability to identify the likely cause of the patient's distress and to alleviate that distress.
When a person with dementia is in pain, no one seems to have a clue about what to do to give them some relief. What marg78 has described about her husband's distress is something we have seen over and over on this board. To say that the patient's agony is the "progression of the disease" is to say nothing -- that does not explain why the person is pain or distress and it does not suggest what might be done to alleviate the worst symptoms. All that medicine is able to do is to throw drugs at the problem in what seems to me to be a fairly random manner. Even at the end of life, there seems to be no relief. Hospice likes to say that no one has to die in pain and that they can alleviate discomfort but that's an outright falsehood. Just look at what Elizabeth's husband went through. I get it that there is no "cure" and no effective treatment for the disease itself. But there also seems to be no understanding of the disease in a way that would give the sufferers any relief from the symptoms that are most painful to them.
Very astute observation and point, myrtle; I agree. Few diseases have an immediate death sentence when they are diagnosed; usually there is some hope at the beginning and some treatments to be tried. There have never been, as far as I know, any miraculous recoveries from AD, as there have been for, say, cancer.
Some AD patients may indeed be in physical pain at the end, but how to know. Others, as I stated on another thread, seem to become lost, trapped, and left to die in the web of plaque.
I do think that the medical profession is as baffled and distressed by not being able to offer hope or treatment as we are. Perhaps it is that AD is just so different from other diseases; or maybe it seems that way until we understand what is going on with it. Emily* linked some exciting news out of Stanford which is heartening in itself, but also shows that there is serious scientific work being done on the disease process of AD.
marche, I'm not talking about the "death sentence" part. I get that.
I'm talking about people having to endure pain while they're waiting for the death sentence to be executed. I am assuming that if someone is yelling, hollering, crying, raging, etc., they are in pain - maybe physical pain or maybe some kind of psychic pain. (Anyhow, who's to say that the dementia patient who is yelling or crying is not in physical pain? After all, their brain, which is a vital organ, is diseased.) If a person is suffering from cancer, the doctors might try to determine whether a tumor was pressing on an organ or a nerve whether the digestive system was being affected and would try to treat those symptoms. But with dementia, they don't seem to know where to start.
Yes, this does tie in with what you wrote on the other thread, which I am still thinking about. I also want to ask you some questions about the scientific research but I'll have to do that later.
Sorry, myrtle, I was a little inarticulate in my response. I don't know of any way for doctors to know if the demented patient is having actual pain, other than if they say they are, or grimace, or their vitals are being constantly monitored. Acute pain may be associated with a rise in blood pressure and heart rate. And, yes, the yelling, hollering, crying may be psychic pain instead (as is seen in some psychiatric disorders).
I would like to believe that the psychic pain is being treated as best it can with Risperdal and the other psychotropic meds the doctors use. Spouses who have been hospitalized for med adjustments may sometimes spend months in the facility as doctors try different med and combinations. Which only goes to show what an imperfect, hit or miss treatment it is. Those of you who have had this experience, do you think your spouse had physical pain or just psychic pain?
Perhaps we should all put our thinking caps on and pool our common knowledge. If your spouse suffered from physical pain and you realized it, how did you? And If that physical pain was treated and improved, how did that happen? Have the agitated spouses been given pain medications? Did that have any effect on their behavior? Has Marinol been used for pain control?
There is a lot of collective wisdom on this site and who knows, maybe the answer to myrtle's question is right before our eyes. I hope so.
I'm a little late joining this discussion - I've been with my wife. Anyway, when I was in Medical School we were taught "if the lab disagrees with your clinical judgement, repeat the lab". That's what should be done in this case. No lab test is infallible.
It was pretty obvious when Larry was in physical pain due to something. He had some ongoing back pain related to some previous falls, and even when he didn't verbalize distress, you could tell because of the grimacing, wincing, and "guarding" when he was transferred.("Guarding" means holding himself stiffly to try to prevent it from hurting.) I gave him an Aleve every twelve hours just to cover the bases; it seemed to relieve or minimize the signs of back pain. When a scrape on his toe (again, from a fall) became infected, the toe swelled and reddened, and it was obvious that it was hurting him…again, mostly because of facial expressions, but sometimes he would say "Oww" or something like that. A podiatrist made a one-time visit, prescribed antibiotics, and trimmed Larry's toenails while he was there.The antibiotics resolved the infection and the pain very quickly…within a couple days the toe looked better and the pain was gone. On the Thursday before he died, when the nurse finally saw for himself the agitation and restlessness that the meds were not controlling…Larry had been in bed for two days by then…the nurse crushed some extra Ativan and gave it to him himself. I was at the library, as my four-hour-a-week private aide was at the house. The nurse called me at the library to say how agitated Lar was, and that he would stay with him to make sure the med calmed him down. Well, yeah…and how long had I been begging and asking for a more effective med regimen??? Hello!! Duh!! Anyway, the Hospice aide came in for her hour and the private aide told me later that the Hospice aide was furious with Larry's condition…said "This is a bunch of (expletive). We're supposed to be helping people die peacefully--and just look at him!" It's astonishing and pathetic that the aide could see it and the nurses couldn't. (Expletive, expletive.) Sorry, I'm getting carried away. Anyway, we got the morphine that afternoon--the social worker actually went to the pharmacy to pick it up so I could stay with Larry--and we started it at 4pm that Thursday. He was almost immediately so much more peaceful and comfortable. They should have started it two weeks before. I think he was in more of a psychic pain than a physical, but still, if any one of you had seen his condition, any one of you could have made the assessment that he was under-medicated. Whatever emotional pain he was in was related to wanting to "go home." He wanted to be back in his boyhood, with his parents, brothers and sisters, back in the old neighborhood in NY. He called me by one of his sisters' names for the last two weeks before he died, and as long as he had the capacity to still talk, begged and begged to go home. "Please", "please" over and over again. "Please, Elvira" "Elvira, Elvira, Elvira." For hours. Why did they let that go on? Did they think if they gave me morphine for him that I was going to sell it to drug addicts out of the back of my car? (Expletive, expletive.)
So that was Thursday, Last Rites were on Friday, Sat., Sun., Mon. was Labor Day weekend, and he died Tuesday Sept. 2 around 3pm, after no food or fluid intake (except morphine dropped into the corner of his mouth) for five days.
I remember your posts about this at the time and thinking how useless Hospice was. Not only was your husband in agony, but so were you.
The authorities always tell you to throw unused prescription painkillers away (or turn them into the police or something) but I think that's a mistake, especially if your spouse is still at home. If your spouse is dying and in pain and no one else will help them, at least you can.
One of the things the Hospice nurse did when he came to the house that afternoon after Larry died was to go through the meds. and take all the narcotics out of the house. I wasn't going to do anything with the Ativan, morphine, etc. but mix them up with coffee grounds and throw them out in the trash…so I didn't care…but thinking about it now, it was perhaps a bit condescending and insulting. In all honesty, I would have been smart to have saved and hidden a few Ativans for myself, in case I had trouble relaxing and going to sleep at night. (I actually slept just fine--the exhaustion made me conk out-- but hey…you never know.)
I doubt if the nurse intended to insult you by removing the narcotics from your home so quickly. My guess is that it was required by Hospice's liability insurer. Too bad the nurse cared more about that than he did about alleviating your husband's pain.
In 2001, when a friend learned that his pancreatic cancer had metastasized, his doctor gave him a lethal dose of morphine to take if he wished. From what I heard, he never took it because his pain was so well managed by the Hospice service he had. On the other hand, my husband's aunt died in terrible agony in a nursing home. I really don't understand why some Hospice providers are effective and some are not. The whole thing scares me.
I do realize the nurse was just following regulations. With the drug problem these days, they have to be very careful. It's been several years since I've attended professional conferences, but the last time I was in NYC for a conference at the Terence Cardinal Cooke Center on 5th Ave. (way uptown--used to be called the Flower of 5th Ave. Hospital)…the Hospice presenters said that pain is still being as under-treated as it ever was…that Hospices nationwide are still under- medicating. Staffs are still so afraid they're going to get the dying person addicted, or sometimes they are just uneasy about administering narcotics in general. How that could even be an issue is just beyond me. At least Larry did get his morphine the last five days, and it was a godsend. I realize it is strong stuff, and we all have to be careful in administering it…whether lay person or professional…but a pain-free death with dignity…with peace…is what we are all striving for…I would hope. If death is inevitable, why, why, why withhold the comforting medications. I certainly would never want to kill somebody, but just to alleviate their suffering and help them go gently into that good night.
Well, it's good for all on this forum to know that Hospices can vary, and that as always, spouses have to be familiar with the issues and be ready to step up and advocate for their loved ones. As we all do. (or did).
Ron was on Hospice for 10 months and all the narcotics arrived at our home the day after he was admitted. We didn't start the morphine until a couple weeks before he died but it was here in case he needed it. So I guess various hospice groups do vary a lot.
And yes as soon as the hospice nurse pronounced him dead she asked me to bring all the meds to her along with a "diaper". She put water in all the bottles and then dumped them in the diaper for disposal. She did leave me the liquid Tynolol and a few Claritin tablets. She said they were required to do that.
Today we (my SIL and I) met with DHs doctor, and the PRN who runs the unit, (who said something had to be done because the crying/yelling/singing, was disruptive). This behaviour began in the past few weeks. (Today he was not crying, just singing (?) loudly.) The singing consists mostly of Aye Aye Aye Aye, with a few words thrown in! His eyes are not focused, and he is just belting it out.
Fortunately (I think) I took pictures on my cell phone of his heartbreaking crying, and the recent behaviours. The doctor had said that every time she passed, he seemed to be sitting quietly, so she was not aware of this behaviour. She said it was a great idea to video, as it showed her what I had been trying to convey.
The Risperidal has been decreased and will be discontinued in one week. The Seroquel 12.5 mg. will then start 2 x per day, and there is a prn for agitation. Dilaudid begins 0.5 Q.I.D, and Dilaudid 0.5 BID for pain.
They did an examination and feel his pain level is a 7 - legs, back, arms, head.
One very positive addition for me, was having a BSO (Behavioural Specialist Officer?) assigned. We were introduced to her about a week ago, and when I was absent yesterday, she spent about 4 hours with DH. She is wonderful, specially trained, and gave me so much advice. DH and I were always WE, and she said I must separate myself a bit, take better care of me (I’ve not been looking after myself – health, weight, teeth, stress, etc. – being so focused on his needs.) She said I should again begin exercising, looking for things that I enjoyed before WE, and try to find something to make me happy – that I could bring that happiness back to him – to accept his situation as it is now, and try to bring as much joy as I can to each visit. To look for simple, children’s books that I can read to him … putting lots of expression into the reading, etc. etc. To be very positive, and even silly if it helped.
Because I was advised (and the doctor concurred) that I should spend less time in the NH, she suggested that I come about 3-4 p.m., help with supper and stay until he was in bed. (She would be there during the morning hours, and look to him, so I needn't worry.) To make the time as pleasant as possible.
She said that he does not remember my name or that we are married, just that I am familiar, I should accept this stage, and do whatever I can to make him happy.
I have gone on and on, but, like all of you, have tried my best. Marche, when he cries, and says “Take me home with you, save me, help me, please … please”, or “I’m never going home with you, am I?”, or “I am ‘kaput’” (finished), it devastates me, but I can’t show him that. I am so hopeful that with the help of this BSO and the new meds, it will give him some peace. Then I will find peace.
I am sorry but I had to sarcastically laugh about getting the dying person addicted. Who cares! When my brother-in-law was dying my sister still refused to give him more than 1 Vicodin a day for fear of him getting addicted. On a scale of 1-10 I would put his at 12. His whole body was bone on bone. The rest of the time she would give him 2 tylenol twice a day.
Marg78 so good to hear you are getting much needed help and help that is working with you instead of against.