<p>Now back to my saga. My mother continues to “linger”, only I really wonder if her lingering is drug-induced. She has an appetite, but not much energy to “eat”. She ends up consuming so little (Ensure, instant breakfast, applesauce, Actia, ice cream) that she’s a bag of bones. But she does have an appetite. Since she’s in bed most of the day, her sleep cycle is completely mixed up. At night, she gets panicky and wakes nearly every hour. </p>
<p>My worry is that she’s being over-medicated and that’s why she’s so out-of-it. She’s being treated as if she is in pain (which she is not) or dying (which may not be the case). She has been getting morphine 3 or 4x a day, plus Ativan at night for the past two weeks. I think the effects of Ativan has been to make her so sleepy during the day, messes up her sleep cycle, and makes her hallucinate. When she left the hospital two weeks ago, the doctors ¶ wrote a RX for these meds with the notication that it was “as needed”. As a consequence, my sister has increased the frequency of the meds, but when my brother watched my mom, he gave her less. She was so much more “with it”, yet she also kept him up all through the night. Now that my sister is in charge, she wants to medicate mom so she doesn’t get up every hour.while my brother wasn’t concerned about that. </p>
<p>By now, the only medical person seeing her is a hospice nurse and she’s “fine” about the meds, and even encourages it to increase. But having spoken to a young adult I work with who was on these meds, it seems they are all wrong. He said her panicky episodes are a result of a growing dependence of the medication and its wearing down. He thought a different medication for her sleep (seroquel) or a longer-acting medication that doesn’t have the same “let down” as Ativan (clonopin). But, of course, he’s not a doctor.</p>
<p>Meanwhile, how does one know what we’re seeing is a dying 97 y/o mom (who was so vivacious) versus a drug-induced mom who is barely talking, much less awake. Please, please. Does anyone have this kind of experience?</p>
<p>Limabeans, It is so very hard for us to stand by and watch. Sometimes it feels that decisions are taken out of our hands. Please call your mom’s hospice nurse and make an appointment to speak with her privately. I think that she will be the best one to provide you with the answers to your questions and reassure you. I have such faith in hospice care. They must follow certain criteria in order to qualify a patient for care. Clonipin is not Ativan and Seroquel is for bipolar disorder and strongly recommended against use in elderly patients if there are signs of dementia. Please, please call hospice. My thoughts are with you.</p>
<p>Thank you to everyone for your kind thoughts. I am trying to deal with the guilt I feel about his situation and I hope in time I will come to a place of acceptance. Limabeans, one of the things that I did in the last month was do a tremendous amount of reading about dying and its stages and signs. As I said, I felt my father was on that road even though no one else seemed to see it. One of the signs is hallucinations, or seeing people and things that we don’t see. My father is the third person in my family that I saw pass after being with my mother and brother also. Hospice is about comfort, not cure. And the hard part is that we don’t know for sure when they will leave us. My father’s sleep cycle was deeply disturbed his last few months. He complained all the time of not being able to sleep at night but he would fall asleep constantly during the day. My suggestion would be to possibly change your mothers drugs if they are not about pain. Unfortunately the dying can be difficult and agitated and it is not always a smooth and peaceful process like in the movies. My heart goes out to all of you who are dealing with these issues. My husband’s parents are in their mid to late 70’s so I fear we will be on this path again soon. Hugs to all who need them.</p>
<p>LB- best to you. There may be overlap between symptoms and medication effects. I had issues with my mother’s medications/side effects while she was a hospice patient (which was for 7 months). I was able to have a very good geriatric pharmacologist review her meds, symptoms, rationale for the meds, etc. It made a huge difference and helped the entire team re-look at what the goals for each medication and her care actually were. This expert was affiliated with hospice. </p>
<p>I found the nurses were very helpful on the ground, but this is a specialty that offers a completely different type assessment. I hope this could help get everyone sorted out and on the same page. I think it is too much responsibility to be dosing prn (as needed) when there are conflicting things going on as you have observed. There may be too many meds on board, drug interactions, former routine meds which are extraneous now, doses that are too high if she has lost significant weight, etc. </p>
<p>Also, although by definition hospice care is palliative, comfort measures without active treatment of the illness rendering the patient terminal, a patient can be signed off hospice temporarily for a test or procedure if it would help to understand things better. We wound up doing this a couple of times with my mother and found it useful. She had symptoms which were presumed to related to her terminal cancer diagnosis. No one checked further due to this assumption. When circumstances required the problem to be addressed, the next treatment team looked into it and found she was still alive because the origin of the symptom was not cancer, but another more treatable health issue. No harm in learning more. Best with this complexity. </p>
<p>Anxiousmommy- sending good thoughts your way. This is so hard.</p>
<p>oh Anxiousmommy - I am so sorry… I know exactly how you feel. Tomorrow will be exactly a month since my dad passed, and I’m beginning to deal with the guilt. Like WorkNPrgoress said, there are ups and downs, but then the end, even though we knew it was coming, can seem very sudden. My dad was similar to yours in that it was clear he was unhappy, was weary, and just didn’t have the desire to fight anymore. I was there for him his last morning, but feel incredibly guilty that I didn’t have all the info to know that I could’ve been there the day before as well. We cannot second guess. I am an expert at second guessing all things in my life, so this one is really hard. You read the book. I didn’t do that… please know that it is true what others have said - he is no longer weary and he is off to a new start. It is SO hard right now, but time will “heal” to a degree…</p>
<p>I hope I don’t offend anyone by this story, it has given me comfort and some sorrow. About two weeks before dad died I had a dream that I walked into his skilled nursing room and two of dad’s sisters were there. They were smiling and beckoned me to come in. I sat down and then I realized what was wrong. They both passed away at least four years ago. I woke up with my heart pounding. It was so vivid. </p>
<p>I know it was time for dad to leave this life, but you always wish you would have known a couple of days or weeks before it happened so you made sure you said what you wanted. Maybe because of the dream, I did some special things with him and I am so grateful for that - and I am also grateful we didn’t fight the last week. Which, trust me, could have easily been the case! :)</p>
<p>In many ways, as my D said, we were fortunate that SIL’s cancer gave us advance notice that she might have fewer days with us. It was stage 4, so we spent A LOT of time with her, frequent visits and phone calls. She lived less than 3 years after she shared her diagnosis. We were glad to have had the quality time we shared the last few months and years of her life.</p>
<p>With my FIL, we also were fortunate that we were able to spend some quality time together, including a trip to Disneyland with him, all his grandkids, all his kids and me. It was a very special time and just before he had a stroke, went into the hospital and died.</p>
<p>We can all just live our lives the best we can and forgive our selves and our loved ones if our last hours, days, weeks and even months aren’t picture perfect.</p>
<p>So sorry anxiousmommy for your loss. I have been following your story as it was similar to my dad’s (he passed away in October). Don’t second-guess yourself; you handled each day the best you knew how with the information that you had. You said he was weary and he was ready to go. You eased his journey.</p>
<p>HImom has it right: often the last weeks/days aren’t what we envision, but we manage as well as we can. When I asked my mother how she thought she would die, she just assumed she would go to sleep and not wake up. How I wish that was true!</p>
<p>During my dad’s last week, I felt I was the only rational one. We kept many specifics from my mother and told her only what she needed to know. My B and S seemed content to be observers, very hands-off when dealing with hospital, geriatric psych ward, and hospice. Maybe because they knew I could and would handle it all.</p>
<p>I have no regrets. I did think of the woulda, shoulda, coulda, but in the end, he lived at home much longer that expected and, in accordance with his wishes, we (but, really, I) did not keep him alive. Exactly what he desired</p>
<p>I agree. Even when you know someone is terminal, the actual day/week/month of the end can be a surprise. Even the Hospice people were surprised how quickly my Dad died once they began caring for him. He got the hospital bed and morphine and then died the next day. Five days before that I would have predicted months.</p>
<p>I cannot begin to thank you all enough. This thread has been a great support to me as I know very few people IRL who have walked in my shoes. Many have lost parents but no one has had a complicated and difficult relationship like I had with my father. I kept asking why me? I know that there are many many people in this world who have had to deal with much more but I cannot convey to you the damage this man did to my brothers and me as we were growing up. Yet, I feel now that perhaps as with all things there was a reason. In many ways I came to a place of acceptance and I hope I did right by him. I struggled terribly with the guilt of not wanting him to suffer and getting him taken care of properly all while I was wrestling with the demons of my childhood. In the end he was still my father, the only one I’ll ever have, and so I am trying to remember some good things though they are very few and far between. In the last year he became much more pleasant and for that I am grateful. I do regret not being able to tell him I forgave him. I hope he knew. I will continue to frequent this thread if only to offer advice from my own experiences, but my thoughts will be with all of you in this journey we have all had to undertake. I wish you all peace and acceptance.</p>
<p>So sorry anxiousmommy. I have similar issues with my father, who did a lot of damage to me and my brothers and my mother. Now he has dementia and has become much nicer. I feel compassion for him now but I don’t know that I’ll ever be able to forgive him. </p>
<p>I’m now paying privately for an aide to come to my MIL once a week to help her with housekeeping and errands. She needs this desperately, but she calls the agency to cancel about half the time for various reasons (“not feeling up to it today,” “felt like I might be getting sick and didn’t want the aide to get sick” etc.). It’s incredibly frustrating. I so wish she was in assisted living.</p>
<p>I wanted to stop back in and give my best wishes to everyone. I will try to come back and catch up on all the postings here, but it stirs up so many painful memories of what I went through with my dad, who has now been gone almost 2 years, which is hard to believe. Best of luck to everyone on your journeys with your parents. Caring for parents is so difficult. Mine was for 7 years, and then the issues with the estate, which is hopefully almost all done (last taxes, etc to do). It is a long process everyone. Hang in there.</p>
<p>anxiousmommy, I just went back and read older posts and realized that it was you who posted just a couple of months ago about taking the car keys away from your father. Wow, things happened very quickly for him. I am sorry.</p>
<p>Anxiousmommy, My condolences. It looks to me like you did right by your Dad. He died knowing you were there for him. Thanks for showing us how to let go of difficult relationships and be more forgiving people. </p>
<p>Simpkin - My Dad is also nicer with dementia. I do fear though for the “Hyde” to come out again.</p>
<p>Oh and it is a journey. Yesterday, I got a call from my brother that hospice care had been checking on my mom and they described her as “imminent” and that he should tell all the siblings. And indeed she did look badly when I drove over to see her at midnight. The good news was that she hadn’t gotten any morphine since 10:30 and no Ativan. I slept in her room and she didn’t squeak a beep except once.</p>
<p>The next morning, the priest came to give her Last Rites. She was aware, and doing the signs of the cross, but no conversation. Two hours later, we woke her up for a small breakfast, and a sponge bath. After that, I washed and cut her hair. When she came out of her room, you’d wonder what happened. Not a whole lot of talking, but she was following along in the conversations, adding a little. She totally enjoyed a Jim Jab “card” my sister created. Then when it was quiet, she read the NYTimes. wait! What did I write? Yep. Didn’t she have hospice care saying the end was near?</p>
<p>I know a lot of this change can be attributed to not gving her meds. They make her hallucinate (morphine) and terribly groggy for 24 hours (Ativan). She got these two meds when she left the hospital, and the hospice nurse regularl checks her meds, but to me, she’s really not at the stage to give her these powerful drugs. Besides, she has lost so much weight (mostly muscle) that there’s nothing left of her aside from skin and bones, making another reason to stay away from those powerful medications.</p>
<p>We don’t even know what she’d die of, since her system is pretty healthy, other than old age and the body just too frail to continue: no cancer, diabetes, COPD, pneumonia (yet), kidney failure (yet).</p>
<p>Thank you for all for prayers and kind words in this difficult time.</p>
<p>Lb- Wow- that is a lot to experience in a few hours. Glad your mother rallied and is not in pain. It is interesting to see how med changes impact other things. </p>
<p>Anxiousmommy- the role of caregiver with some ambivalence due to prior history is not unfamiliar to me. In a lot of ways, decisions can come down to who one wants to be and how experiences can be applied in a variety of relationships. It’s a different call for everyone and some elders can not be tended directly by their families because there are too many unresolved or unacceptable exchanges over decades. I hope your place of acceptance and forgiveness brings you peace going forward. In my experience, that can make a difference. </p>
<p>I thank everyone for sharing on this thread and continue to learn much from others’ perspectives. Some days are manageable and other days you just wonder what reserves are going to help you power through the ambiguities. As people live longer, those caring for them are older also. It can be a lot of juggling. </p>
<p>All the families who are currently suffering on this forum are in my thoughts and prayers. </p>
<p>Our family, as well as my surviving mother (who lost my dad a little over a week ago) just agreed to move into a senior living “home” near all of her children, on an independent living floor, with the option of transitioning to assisted living when the time comes. The whole family, and most importantly my mom, feels a huge sense of relief. Mom is like a different person from her former self and so are we! For her, moving back into her home would have had traumatic results, since her house mate of 57 years wasn’t there any longer.</p>