<p>I’m sorry to hear about your dad, anxiousmommy. See what the doctor says tomorrow about the pneumonia. I’m sure that they can recommend some local home health agencies for you to contact. I don’t know how many days your dad was or will be in rehab. Try to make an appointment with the rehab. social worker. They can help you to navigate with home health care and see if he is elegible for any visiting nurse, OT or PT to come to the house. If the term “failure to thrive” was used, it can mean different criteria to different agencies, consequently, it isn’t used that often anymore. Has your dad lost significant weight despite proper nutrition being offered? Is he becomming increasingly weaker despite the therapy and medication for pneumonia? Take a long, deep breath and gather as much information from his direct providers as possible. Follow your instincts, you won’t go wrong.</p>
<p>Anxiousmommy I am sorry to hear about your dad. My mom broke her hip last Sept. and went to rehab but got weker and was in lots of pain and she had a failure to thrive dx. She passed away peacefully the same day we transferred her to the hospice facility. It is hard to see our folks in deep distress and harder still tp let them go. I wish we could at least get a phone call or text message from the great beyond letting us know they have landed safely. !!!</p>
<p>I haven’t joined this thread until now. Looks like the end is quite clear. My mom just celebrated her 97 birthday today. She has always been incredibly strong willed / strong spirit. It was a good thing because she was “a good Catholic” and had many children (i.e. no birth control back then). It really was a matriarch. But on 12/19, she was weak and went into the hospital, and declined day-by-day. Doctors said it was pneumonia, but then it wasn’t. Eventually they said, “there was nothing more they could do and she might as well go home”.</p>
<p>So she’s at home, and lingering. We know the end is near. But at the same time, she is still hungry and still gets up to use her commode many times a day (with lots of help). In between, she sleeps most of the time. Even when we feed her, her eyes are closed. But then there are times when she is wakeful: she’s aware of her surroundings and gives me the impression she’d rather be reading (her favorite pasttime was reading the NYTimes everyday) although she can’t/wouldn’t now. She calls out for water. Tonight I asked her if she’d like me to read and she seemed to love the article I read about Downton Abbey. After that, I put on Pandora and had her listen to Frank Sinatra. Maybe she just slept.</p>
<p>Yet, there she sits, as if already passed. Her mouth is open, her eyes closed, and she’s gone. My sisters tell me that she would not like to continue living this way. She’s not in pain, maybe thanks to the regular doses of morphine, but she’d be too anxious without it. What to do??? Feed her minimally (as my sister thinks), or coax her to eat more? Should I fuss about getting her dressed everyday, or just let her lie in bed? (She’s totally unable to do anything without 1-3 people helping her.)</p>
<p>One part of me wants her to recover. She lived with me in the past few years and I helped her return to good health in the past. I know this is different and she’s not likely to recover, but how much should I push her, or do I just let her peacefully go?</p>
<p>Wow, limabeans. 97 years is quite a life. I think she is entitled to do/eat whatever she wants. At some point her brave heart will just stop, and as long as she is not in pain and content, I say that’s the way to go.</p>
<p>Hugs and prayers limabeans. It sounds like you have returned your mom’s loving care. Is hospice involved? They offer wonderful care to their patients as well as to family members during this difficult time. Personally, I think making your mom as comfortable as possible, including perhaps a urine catheter so that she does not have to struggle to use the commode, nice backrubs with wonderful warm lotion, good mouth care, and continue reading to her and playing music that she likes to listen to, having the family come by for short visits and spend time telling her stories and everyday happenings is comforting. I’m so glad that she is not in pain. Is she on a morphine or fentanyl patch so that she does not have to swallow a pill? If she is not in pain, and you have help, I would give her a light sponge bath and a new nightgown everyday, a nice brushing of her hair, a fresh pillowcase, etc. You mentioned that she is Catholic. Would it comfort her to have a priest visit and administer the Sacrament of the Sick or sit and pray? Thoughts are with you and your family.</p>
<p>limabeans, hugs. Every parent should have such a loving child as you.</p>
<p>I had the same question as ECmotherx2: Can you call in hospice? They will be able to help you with the questions you’re having.</p>
<p>Bless you.</p>
<p>ECmotherx2–your advice is more helpful than mine!</p>
<p>What about looking into the possibility of home health care or a visiting nurse? (may be the same thing for all I know). I’m just wondering if at some point her care may be more than you can handle, or you will just need relief from the stress of caring for her, if this situation goes on too long.</p>
<p>Actually, my mom does have a private 24-hour aide. She started that once she left the hospital. She can barely sit up on her own, much less get up to use her commode. Come to think of it, when she was in the hospital just a week ago, she was sitting on her own. Now? She has to be propped up by pilows and one of us while we change her.</p>
<p>She also has Visiting Nurse care (aka Hospice). They’ve been wonderful and so helpful/knowledgeable. It’s really the first government program that seems worthwhile. </p>
<p>She’s not in pain, but she does experience lots of anxiety. For that, she gets morphine (liquid form) 3-4x a day, plus Ativan at night. I’m still stuck trying to balance how much care to give her: is it really lengthing her life, or just making me feel good? Should I wash her hair, or just forget it? (Although she gets a daily sponge bath, it’s been weeks since her hair has been washed.)</p>
<p>limabeans - I so feel for you… I have to ask - does your mom have a living will? What do you know from knowing her what she might want in this situation? Can hospice give you some advice on what level of care she should receive? My dad was in a similar situation and when he stopped eating on his own, we didn’t force him much. He chose to stop drinking as well, and we still tried to encourage sips here and there, or bites of food here and there. I felt similar to you… he was not thriving,and was clearly not going to improve, but we couldn’t just starve him… </p>
<p>If your mom doesn’t object to having her hair washed, and it would make you feel better, then why not do it? If she would object, then that would be where to draw the line. Do you know what her anxiety is about? Is she scared of the end? Or is it due to a dementia of sorts? (I don’t mean to imply anything, I’m just going on my own experience with my dad).</p>
<p>My biggest recommendation is to make a decision about what your mom would’ve wanted and then make peace with it. It sounds so harsh as I write that, but you are looking for advice, and having very recently gone through many of these very same feelings, and not being sure how much time my dad had left, I am now left (after his passing) with feelings of second-guessing myself and regret over what I should have/could have done differently. Throughout his last months, my husband had to frequently remind me about what Dad would’ve wanted. We had to imagine Dad during his better days, the dad we knew, and what THAT dad would’ve wanted. </p>
<p>In his last few weeks, dad was very combative, fighting most help, fighting against food (not willing to be fed), so he got sponge baths and protection against skin breakdown, and diaper changes, but there was no teeth brushing or hair washing. But that was because he was so against it. If your mom is OK with it, and even might find it relaxing (even if she can’t tell you that), then I think it would be OK. Feel free to PM me if you want.</p>
<p>And big hugs to you. I truly know how hard this is, in fact, it is even harder for you as your mom is in your home? My dad was at his home with a 24 hour home health aide and my mom (who is in early stages of dementia and I never could understand if she truly understood everything that was going on…) so I wasn’t there every day to feel the emotion and stress. The mouth open and looking like he had already passed - I can remember that vividly… </p>
<p>I just re-read some of your post - and I have to change what I may have implied before. If SHE is hungry, then you should feed her. If she asks for water, give it to her. Those are still her choices. If she is very close to the end, then she may stop asking, and that may be the time to give less… again I guess I’ll go back to the question of hospice and the info they can give you on what exactly is “palliative” and what is extending her life artificially. Again, I feel your pain and am so sorry you are going through this… and sorry for your mom as well,although I’m guessing it is actually harder on you right now… I actually have my OWN anti-anxiety meds that I have needed during this time. Got anything like that for yourself? Everyone talks about the stress on caregivers and how we have to take care of ourselves… it’s so true…</p>
<p>oh anxiousmommy - sooo much can change in 6 months… that is a very hard thing to get used to. I knew my parents were old, but somehow, since they were both driving, and living on their own and taking care of their great dane mix, it seemed like it could all just go on like that. That was in May of 2012. Now, the dog is gone, Dad is gone, mom no longer drives, has been diagnosed with being 70% deaf and with early dementia, and just moved to assisted living… </p>
<p>I’m so sorry your dad has taken a turn for the worse. As I said to limabeans above, try to take it all in and make your decisions and then really feel OK with them. Even though a lot has happened in the last 6 months, things could accelerate now. Try to stay strong and to take care of yourself. Two weeks is just enough time to find a home health care agency. We did what was suggested above, and went with a recommendation from the social worker at rehab. We also had about a 2 week window to work in. There’s a lot of info, but it is doable. I second the deep breaths!!! Please let us know how it’s going and we will help however we can.</p>
<p>Hi Limabeans,</p>
<p>You asked, “I’m still stuck trying to balance how much care to give her: is it really lengthing her life, or just making me feel good?” </p>
<p>From my experience, there was no way to know the answer to this. So frustrating! In the end we kind of have to feel our way and just be ok with doing the best we can under hard circumstances. I think there is no way to walk through this transition without some bad feelings and self doubt. I found that the few times my mom looked at me and smiled or winked were like food and drink - a clear signal that we were doing ok. Whatever makes her happy and you a bit more comfortable are good. There is no right way to do this because it is all so uncertain! If ever there’s a time to give it up to (whatever you believe in) g-d or cosmos then this is that time! xoxoxoxoxo</p>
<p>I saw this thread last year and knew someday it would come in handy when the inevitable finally occurs… Thanks to all who have shared their experiences, offered support, or given advice so far. It has been very helpful to me. </p>
<p>I just lost my dad Friday night and have my mom living with me as we try to sort things out. So far, I’ve noticed that my mom will say things that are the exact opposite of what she wants: “please don’t make me breakfast”, “please let me go home”, etc. because she does NOT want to be a burden. My mom is feeling bad that I am having to care for her. </p>
<p>My 89-year old dad was her “caregiver” up until the time he was admitted to the hospital on New Year’s eve with a respiratory infection. Always tough when the “stronger” parent dies first. My 88-year old mom and he were married for 68 years. She began declining not just physically but emotionally when she had a mild stroke followed by losing her driver’s license (aka independence!).</p>
<p>Will continue to be gaining insight, knowledge, and support from all of you going through this…</p>
<p>So much ambiguity as we navigate this phase with our elders. Condolences, jshain and best with your mother. What a shock when things change so rapidly. </p>
<p>Limabeans, sorry for what you are facing. I found that hospice was helpful on the feed or not, water or not question. There usually is a point where there is disinterest in food if the body is shutting down and it is not easy for the person to swallow, resulting at times in aspiration and therefore the recommendation to not offer food. As far the hair washing goes, there are dry shampoos as well as disposable cloths with no rinsing required if that helps with logistics.</p>
<p>jshain, I’m sorry for your loss. Thank you for sharing your experiences with us. I think if we all follow what our instincts tell us, we won’t go wrong. Sometimes that means that some of our care that we offer to our loved ones is more helpful to us than to them, but that is perfectly OK as long as it does not cause them pain or is against their wishes. Talk with the hospice nurse, they can evaluate the situation quickly and offer good advice. If your mom’s hair styling was important to her, there are products available to use that will do a “quick wash”. Brushing her hair may be as soothing to her as it would be to you. There are small sponge “toothettts” that can be dipped in a little mouth rinse and used on your moms teeth and tongue. Some petroleum jelly can be placed on her lips as they will dry out. These are small things that you mom may get some comfort in without prolonging her life. I agree my3gr8boyz, if your mom ask for or indicates water, give her a little. Again, it’s ok to do these things even if it is to make you feel that you are helping her. Is your mom experiencing agitation or anxiety? The nurse is well versed in different medications that may help. Try to get your own rest and keep up your own nutrition.</p>
<p>I think it is easy for all of us to second guess ourselves after a parent dies, despite having years to prepare, there are conversations I wish I had had with my Dad :(</p>
<p>On food & water, I believe you should give them whatever they want whenever they want it. Why not? My Dad had untreatable cancer for several years, it was slow growing. About a year before he died Mom complained to the Doctor that Dad was not eating healthy, she hoped that the better nutrition he got, the longer he would live. The doctor specifically told her that ANY calorie was a good calorie for my Dad, that the details did not matter. The doctor said he could eat cookies, candy, & ice cream every day if he wanted. Dad was thrilled, Mom was shocked. But she stopped nagging him, we all did, and that last week of life, he had chocolate malts every single day :D</p>
<p>When there is no possibility of recovery, why fight over the details, if a person is hungry, feed them, if they are not, don’t stress it. My Auntie died in her early 90s and she just stopped eating and drinking, it is sometimes part of the process of the body shutting down.</p>
<p>I just have to share: my dad had pancreatic cancer and my good friend (a doc) said give him anything he wants, nothing will change coming events. He had ice cream with sour cream on top for breakfast and cheezits and chopped liver and a sip of his beloved gin for lunch one day! My mom thought it all was crazy but why not? He enjoyed that ice cream every morning for months. Sour cream has always been one of his culinary delights so why in heaven not? I enjoyed watching him relish his few bites! A few weeks before he died he enjoyed a steak dinner (mom was again flumoxed at the thought of cooking this for him). He loved it.</p>
<p>Of course in the last week he didn’t eat much but it was up to him when and what he ate. When he could no longer make his wishes known we knew the end was nigh. As for my mom; she stopped eating on a Saturday and passed away on Tuesday. It was the day my sister mentioned, “ooh, mom didn’t eat or drink today” that I knew I had to get back there fast. Especially the no drinking part.</p>
<p>I have been talking to another senior citizen this week. The wife is nearly bedridden/wheelchair bound, though can generally transfer with help between chair & bed. Night time toileting is problematic as they are 80+ and do not have 24/7 care so the old guy is helping the old woman in the middle of the night. He is groggy from being awakened, she is not at her best and not infrequently she slips and falls/slides to the ground. These are not injurious falls, but it is difficult to get her up.</p>
<p>They have called friends in years past, but the friends are now saying NO to middle of the night requests. They have called paramedics, but hate to do that. It is time to make some adjustments.</p>
<p>A CNA suggested she just “go in the adult diaper” at night, he struggles to allow that both because it feels humiliating and because when he has tried it, sometimes there is even more work in the morning as she wets the entire bed.’</p>
<p>The other issue is that at his age, he needs to sleep and some nights is awakened 2-3-4-5 times, other nights only once.</p>
<p>Any ideas or suggestions for how to ease this? She also sometimes gets up by herself (forgets in sleep that she is immobile) and he awakens to hear her fall.</p>
<p>They really do not want assisted living and he hates the idea of hiring some one to sit by her bedside all night, but is getting closer to that decision.</p>
<p>How can it be made safe to toilet at night and not get up? I wondered if nursing homes ever catheterize people overnight?</p>
<p>Bedside commode? </p>
<p>This might be a solution if she can transfer to a wheelchair. Transfer to a sturdy bedside commode.</p>
<p>best wishes</p>
<p>Daily or nightly catheterization sounds like a good way to get a bladder infection.</p>
<p>Men can use a handy bedside bottle, but getting a woman on a bedpan is almost as much work as getting her out of bed to toilet. Esp. if both are half-asleep and elderly.</p>
<p>I hate to say it, but I see assisted living/nursing home in their near future. Why are they so against this?</p>
<p>They have used a bedside commode for years, but she forgets she cannot walk when she is asleep, then gets up and falls as she is unable to stand unassisted. It’s the getting her up that is the issue plus the lack of sleep for him.</p>
<p>Yes, everyone agrees, except them, that assisted living could be a great solution. She thinks she will be put in a nursing home to die and he is afraid she will mentally die since she thinks that so strongly. It is also uncertain as to whether they could be in the same room or would be in different wings.</p>
<p>They have lived in the house for 40+ years and he is an independent person, EXTREMELY independent. </p>
<p>I think that hiring someone for the night shift will come next, but I don’t know how expensive that is and it would be a waste of money on the nights it was not needed so he is struggling.</p>