My husband and I agreed we did not want feeding tubes, or resuscitation when we were old and our quality of life was down to very poor. We never discussed renal failure and what it entails! I know I won't let them do dialysis if it comes to that, but I'm wondering if I have done right by bringing him to hospital again for renal failure. This is the second time since Dec 24th. He didn't have very many good days in the period between hospitalizations. Very few smiles, very little talking, unable to walk without assist, or eat without assist . Have any of you been in this position ? And how did you handle it
Hi Ky caregiver. My friend is a hospice nurse. Hospice will not only help him, they will help you get the info you need and help you think through the decisions you need to make. They will be able to explain the options in your area. My friend also recommends looking for a non profit hospice if available in your area.
Ky caregiver, my DH was moved from palliative care to regular hospice in August last year. When he stopped walking they said he had a UTI. Hospice RN asked if I wanted to treat him for it and I did. He would not walk even after UTI cleared up. About six weeks later he developed pneumonia. Once again, hospice RN ask if I wanted him treated. I said yes, even though insurance would not cover the injections he needed, I agreed to pay. He was in a SNF so no hospital transfer was needed. I will never know if treatments prolonged his life or prolonged his death which happened on 11-15 -16. I made what I thought was the best decision at time. Final cause was listed as Alz/Dementia Final Stage. He received more personal attention in hospice care and all hospice personnel were kind and understanding towards me and let me make decisions about care. My heart is with you as I know this is a very difficult and heart wrenching time. Prayers and hugs to you.
It sounds like he did not want any interventions if there was no reasonable chance of getting a return to former quality of life. But I'm guessing he would have wanted to remain comfortable and pain-free. I think as the others have said, you need to discuss with the team what the interventions for renal failure would entail...and how in their judgement patients do if renal failure is not treated... and does it or does it not comply with your husband's wishes (expressed to you previously) of not wanting heroics.
For what it's worth, I've seen what I guess I'd call two kinds of renal failure. There is the patient who is up and around with quality of life--they don't want to die--they go to dialysis. (Or have peritoneal dialysis at home.) Then there is the dying patient, in bad shape for whatever reason. Their kidneys shut down, they are comatose by this point, and it is just part of the dying process.
So I think this is your judgement call. Get as much information as you can, and base your decision on your husband's individual case. You know him best, and you are there on site. Make your best call, and don't beat yourself up about whatever it is you need to do.
He was ok until Dec 24th when he had his first renal episode. But since then very little enjoyment of the day. He wouldn't want to live like this, I'm sure! As an added problem he has stage thre wounds on his bottom and has lost 20 lbs in nsg home since dec 31. I'm looking at bringing him home or going to a nsg home 30 miles away. I'm thinking I might sue them for neglect! I'm just livid with anger. I'm trying to control it and focus on what is best for my loved one. Thank you for your helpful comments
I agree with those who say you should talk to Hospice. Hospice (not the docs or the NH) are the experts in this subject. Ask for a Hospice evaluation. After you hear their recommendation, you can decide whether or not to hire them.
Yes, talk to Hospice--I would get everybody's input, so you can make a good decision. I am wondering why the stage 3 decubiti and the 20 lb. weight loss. Usually bedsores are simply the result of poor care, and I have no respect for staffs who let their patients deteriorate like that. That's when I start calling the State on the Hotline. But having said that, I'll get off my soapbox and say that in the very compromised patient, often when they are terminal, you cannot prevent bedsores no matter what you do--turn and position every hour, hydrate with an IV, lotion them up the ying-yang, put them on circulating mattresses, use sheepskin heel and elbow protectors...the whole nine yards...and they still break down. But it should only be in the most dire of circumstances, and hopefully not even then.
If you google "bed sores end stage renal disease" there are many articles referring to the break down of skin due to toxins from impaired renal filtration. As elizabeth* mentioned, in compromised patients pressure sores will sometimes develop in even the most meticulously cared for patients.
Sadly, this sounds like a very complex case with multiple disease processes going on. The best use of your energy is to concentrate now on what works for making your husband comfortable and for you being able to spend time with him.
The end is not easy. Let hospice guide you through it.
Ky caregiver, Sorry I am just now seeing your response to me. My DH at the end had pain in his lower abdomen and we did not test to see what was going on just treated the pain. Also at the very end he had bed sores. I did my best to keep them from happening. Their skin just breaks down, along with the body. Just very sad to see it happen to the ones we love.
Do talk to hospice, they helped me so much. I had them for almost a year and I could not have done what I did without their help.
Hospice might be able to order an air mattress that rotates the air from side to side to help some. As mentioned, skin breakdown is unfortunately common even with the best of care.
Merriam Webster’s medical definition of hospice is simply: “a facility or program designed to provide a caring environment for meeting the physical and emotional needs of the terminally ill.”
But somehow, perhaps because of Medicare or insurance company practices, the word hospice has come to take on the much more ominous connotation of “less than six months to live”, and this is unfortunate.
All of us here on this forum must sooner or later come to accept the fact that there is no cure for AD at this time, and that our loved ones really are doomed to die from the disease – but at some indefinite time in the dim future, not within six months, not if I can help it! Calling in hospice might seem like abandonment, but in reality it might just be the kindest thing that we caregivers could do – both for our loved ones and for ourselves.
I was lucky in that I never really had to make “the decision to call in hospice” – I sort of backed into it and was just carried along with it once the thing was set in motion. Perhaps an account of the “gracefulness” of my hospice experience might be helpful to some who are beginning to be overwhelmed with care giving.
I had kept something of a log of the whole care giving experience, saving pertinent posts to this forum as well as personal communications to family and friends, so with your indulgence I’ll sort of pick up from that log at the point where hospice entered the picture. I tend to be wordy, so this will have to be in several installments – sorry!
continuing: From 6-11-09 e-mail to family Better you hear it from me than via the grapevine – Frances is now under hospice care – but that doesn’t mean that she’s on death’s doorstep – only that our family doctor suggested this as a way of ensuring her continuing medical care now that it’s becoming impractical for us to take her in for routine exams or lab work or whatever. The last time she actually left the house was back in mid-January for blood work at the lab, and just getting her in and out of the car was so difficult and upsetting to her that we haven’t attempted it again.
I had scheduled a visit with our family doc for Monday of this week and had sent him a letter about a week earlier advising him that we had made the decision to forego all future routine medical and dental exams because of their questionable benefit in any practical sense, and listing a number of topics I’d like to discuss with him relative to Frances’s ongoing medical care. The first thing that I had listed was a request that he consider putting her on a daily prophylactic dose of an antibiotic since she has just completed a round of antibiotics for her fourth bladder infection within the past year. He agreed to do that, so now she’s taking Macrobid daily. My second item was a request that he write a prescription for a bedside commode, since nightly escorted trips to the bathroom are becoming more difficult, and he wrote the prescription so Medicare would cover the cost. My third question was whether or not we ought to consider setting up some sort of visiting nurse program for any needed future medical assessments like drawing blood or possibly using a catheter to get a urine specimen or whatever, and he responded to this by suggesting that we get a “hospice consult” and see if she might qualify for hospice services. His secretary called hospice to request an appointment for an evaluation, and before I got home from his office I’d had a call on my cell phone and set up an appointment for later that afternoon.
I’ve been very impressed with the speed and efficiency with which things have progressed since that first mention of hospice on Monday. A nurse from Vitas Hospice came out on Monday and did the evaluation and enrollment paperwork, on Tuesday they had a bedside commode and a sealed “comfort kit” of prescription drugs (for possible use by the nurse in an emergency) delivered and a second nurse visited – this one will nominally visit once or twice a week for awhile just to keep track of how Frances is doing. Then yesterday a very laid back and likeable hospice doctor visited with about five minute’s notice – he lives nearby and sometimes bikes down our street. Still to come is a probable visit from a social worker and maybe even a chaplain. I think the basic plan is to watch her for at least a couple of months and see if she continues to decline – I believe the fact that she’d lost ten pounds in the past few months was an important factor in their decision to enroll her. With Alzheimer patients, a doctor’s determination of “failure to thrive” has usually been sufficient for hospice coverage, since AD is, by definition, a terminal condition, but Medicare may be tightening up on qualification recently. In any case, Frances will probably be evaluated for a few months and then a determination made as to whether the hospice services should be continued. Even if she’s dropped later, we will have on file with them copies of her living will, designation of health care surrogate, and “Do Not Resuscitate” form signed by the doctor, so it should be easier to re-start the services later if needed. Also, the social worker will probably be able to help me figure out what specific provisions we need to make relative Frances’s earlier agreement to allow her brain to be autopsied for research purposes if desired. I am planning to go ahead now and get in touch with a funeral home and do pre-planning and probably also prepayment of ”final arrangements” for both of us.
continuing: I was afraid that the mention of the word “hospice” would alarm Frances, but it all seemed to just go over her head. I explained to her that it’s a way of getting the doctor and nurse to come to her rather than having to go through all the hassle of getting her to the doctor, and she seemed to like that idea. She tried to get both nurses to sing with her, and the second one did – a nice voice and knows the words to familiar hymns, which sort of redeemed her in Frances’s eyes – she’d already told this nurse that she was too fat, asked if she ate a lot, asked if she was married, etc. Later on a potty trip, I reminded Frances that it might not be nice to say those things to the nurse and she agreed, but then confided to me her opinion that the nurse’s husband had probably quit her because she was so fat – or maybe because he couldn’t afford to feed her – so her sense of humor is still intact!
Frances had a good April, but not so good May – probably because of the bladder infection that we finally recognized and had treated in late in the month. She’s seemingly feeling better now, and again eating everything I put in front of her, after a very picky period during the preceding month when she had no appetite and wasn’t drinking enough.
From post to Alzheimer Spouse message board 7-7-09 Have I told you before about the hospice chaplain who comes out every Wednesday to sing and do bible study with my DW? The first week he accompanied their singing by playing our piano, the next week my guitar, and tomorrow he's promised to bring his autoharp -- very talented and full of love and joy. That's the biggest thing going on in my DW's life these days -- she's confused about the details, but sort of remembers it has to do with the church and that someone comes and sings with her, and she asks about it every day. Anyhow, this past Wednesday Reverend Jeff asked her how long since she'd had communion, and she deferred the question to me. We concluded it had been at least two or three years, so he asked her if she'd like him to give her communion. She said she would (she's in favor of anything he suggests, even if she doesn't understand what it means anymore), so he went out to his car and came back in with his handy dandy communion kit, consisting of four silver communion cups in a leather case. He found a couple of wafers in one of the cups and I found a bottle of non-alcoholic wine in the pantry, so he set up shop on a pretty napkin laid on the piano, where he had been playing for her. He found and read the appropriate passages in his bible and then offered her a wafer -- which she just looked at in his hand until he finally placed it between her fingers and steered her hand to her mouth. He finally got her to take it between her lips, where she held it for a long time until he finally persuaded her to chew it up, explaining what it symbolized. Then he gave her the cup of wine, explaining what it symbolized -- and she then surprised both of us by swishing it noisily back and forth like mouthwash --- awwww! He admitted that was a first for him -- someone swishing their communion wine -- and I got it all on video (with his permission) -- funny, but sad at the same time.
continuing: From post to Alzheimer Spouse message board 7-11-09 My DW, now probably slipping from mid/late Stage 6 more into Stage 7, has increasingly been expressing some dark thoughts about dying lately. Not the kinds of things y'all have been talking about -- not questions about what will become of her family or affairs afterwards -- she seemingly doesn't even know who my son and I are most of the time now, and increasingly asks to be taken "home", evidently to a quieter and more secure place. My son and I are mostly just someone who takes her to the potty and tries to get her to eat too much. She wouldn't eat breakfast this morning -- only a small glass of prune juice and some water -- complaining angrily that "they" just kept trying to force her to eat when she'd already done that -- so when I tried later to get her to eat some lunch, the same reaction again. I tried cajoling her into it by offering watermelon, ice cream, whatever, but she kept protesting that she'd already done that and she was full up to the top, and when I tried explaining that she'd had virtually nothing to eat for several days and that I was concerned about her health if she didn't eat, her answer was that everyone has to die sometimes. I agreed with her, but told her I wasn't ready to let her go this soon, and asked why she would talk about dying. She had a hard time getting the thought out, but it was basically that people keep trying to force her to eat when she doesn't want to. She frequently complains of being very tired, but no specific complaints beyond that. I asked her if there weren't things that she still enjoyed doing, like singing, and her answer was that the only reason she sings is that people expect it of her. I really hadn't heard her express that before, and it sort of shocked me -- but that does sort of tie in with something our son has said several times -- he thinks that maybe she does a lot of the things she does in the attempt not to disappoint us, and that it's taking lots of effort on her part to do that. I guess he could be right -- she has always been one who "did what she was supposed to do", and I'm sure she has put up with my dragging her through lots of things she would rather not have done -- just to please me. I guess I'm going to listen more carefully now -- I'd hate to be putting her through hard times just to not disappoint me. If I conclude this is true, I guess I'll just have to just suck it up and give her permission to leave us if that's what she wants. Not a fun thing to think about -- I've known that time would come, but not prepared for it this soon! Maybe she'll feel better tomorrow!
continuing: From 8-9-09 e-mail to family I guess it's been a couple of weeks since I last gave a real update on what's going on with Frances. She continues to decline -- sleeping nearly all the time and hardly eating or drinking anything at all. Our last attempt to give her a shower a couple of weeks ago turned out badly, as I'd feared it would, so we concluded that we'd finally reached the point where it would be best to call in a home health aide from hospice to bathe her in bed; and then a few days later, our last attempt to move her between her bed and recliner turned out so stressful for all of us that we haven't attempted it again -- so she's effectively been "bedridden" since last Sunday. Hospice brought in a hospital bed on Monday and we converted our big living room into a "sick room" by moving the furniture back toward the dining table and making a place for the bed in front of the fireplace. A home health aide comes three times a week to bathe her, change bed linens, etc., and Bill and I have finally mastered changing her Depends with her lying in the bed. Not having to do that as frequently now, as she's eating and drinking so little. She keeps her legs drawn up in a fetal position all the time now, and it's evidently become painful for us to move her legs when changing her, or when the aide bathes her or changes sheets, but she doesn't seem to hold any grudges after it's over -- just whimpers and tries to fight us while we're doing it. She's on some sort of air mattress that automatically cycles so as to effectively reduce pressure points where she's lying. We've moved her baby monitor in there as well, but she rarely calls for anything now. And I'm finding it lonesome sleeping in our big bed by myself after almost 60 years together -- anniversary coming up in just over three weeks, but I'll be very surprised if she holds out that long. A few things have brought me to tears recently, and they're just below the surface a good bit of the time now when I'm in the sick room with her. One thing that really got to me, and still does when I think of it, was last Sunday morning. After the alarm clock went off at 6:30 I lay in bed for a few more minutes holding hands with Frances, and then announced that I guess I'd better get up and take the dog for a walk. Frances said, brightly, "Maybe I'll go with you!" -- evidently momentarily forgetting, or being unaware of, her afflictions -- like an innocent child. Whew, I'm teary again!
ending: From 8-29-09 e-mail to family When I last wrote a couple of weeks ago, Frances had been bedridden in the hospital bed for about a week, wasn't eating very much, was sleeping nearly all the time with her legs contracted into a fetal position, but would rouse somewhat every two or three days to interact with us for maybe an hour or so. I wish I had some good news to report today, but that's not to be. She hasn't taken any food in the past three days, and probably only about 8 ounces of water in that time -- just a few small sips yesterday and none today. Nor has she really roused from "sleep" during that time -- maybe looking up and smiling briefly at Rev. Jeff and trying to touch his hand on Monday, and maybe opening her eyes and looking at Julie on Tuesday. The hospice doctor visited on Tuesday and said that once they stop taking fluids, they usually die within five days, so we could be looking at this weekend. Thankfully she doesn't seem to be experiencing any pain except when we have to move her for changing a diaper or bathing her, and just in the past couple of days we've been giving her a small dose of liquid morphine beneath her tongue beforehand to take the edge off that discomfort. And we've also begun giving her Ativan anytime she starts to fidget and tense up her arms and legs like she thinks she's falling -- and that seems to calm her down and she sleeps peacefully for hours.
I shed lots of tears last week, almost any time I was at her bedside or tried to talk with anyone about her, but I'm doing better this week. I had told someone last week that I could probably write a country song about "those trusting eyes" that she looked at me with -- trusting me to not let anything bad happen to her, and yet bad stuff WAS happening and I was powerless to do anything about it. That hurt a lot. But this week her eyes are mostly closed, and maybe I've also more nearly come to terms with things. Making the decision to not push her to eat was hard, notwithstanding assurances from the hospice folks that she doesn't experience hunger and thirst as we do. I have realized, intellectually, that pushing her to take a few more bites or sips could only serve to extend her life for a few more hours or days, and that these hours or days weren't really good ones -- not for her and not for us. But emotionally, it was so hard not to try -- I'd feel like I'd "won" a small victory if I got her to take a bite or a sip.
Hospice has been great, and we're also getting good support from friends and family. Earlier today I called Frances's bluegrass buddy, Bonnie, and asked if she'd try to round up a couple of other gals and do a few favorite hymns for a memorial service -- nominally about a week from today. Pretty emotional call, but we got through it.
I was just thinking today what a shame it is that all this had to happen to sweet Frances -- she was still in such good shape physically -- she even still has all her parts -- never had surgery for anything.
My cataract surgery went fine a couple of weeks ago, and I've busied myself these past few days "primping" the house (washing windows, hosing cobwebs and dirt dauber nests off the porches, etc.) in preparation for a wake here all too soon. I'll keep you posted.
From 9-1-09 e-mail to family Always one to do what she was supposed to do, Frances slipped away gracefully and peacefully in the early morning hours on Monday. I had spent the preceding three nights at her bedside, holding her hand while dozing off and on in an armchair next to the bed, as she grew weaker and her breathing more shallow and labored. She hadn't made any response to anything since the previous Monday, and hadn't taken any fluids since Tuesday. The hospice doctor had told us that once she stopped taking fluids, she probably wouldn't last more than another five days, which proved to be true -- she just finally stopped breathing at about 4:15 AM on Monday.
Thank you groubdchopper! Awesome account! David is rallying somewhat here in the hospital. He is and always was very strong. He's had no real health problems until the Alzheimer's, then now the renal problems. When we leave her I will make decisions based on his recovery and if it continues. I do appreciate your response to my plea for answers to my boggled mind! God Bless! I'll keep you up to date!
Your account touched my heart...thank you for sharing. I think we are becoming closer to that than I could have imagined, since Dan now has bladder cancer. Depends on what decisions I make, I guess. I will re-read your story again & again, I suspect.