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First off I am not a caregiver of an elderly person. My parents are taking care of a 98 year old Family member, Hazel. She is 5'1" and about 60 lbs. They recently took over this job as her brother died. In the past four months she has gone from eating 500 calories or a bit more in a day to eating about 150 and sleeping 20 hours a day. They called her doctor who said let's evaluate her for hospice. A hospice person came out and started the evaluation. Hazel doesn't believe she is dying and gets agitated when it is mentioned. She is otherwise in her right mind. So the hospice people said they wouldn't mention it to her. They had my parents sign the papers as Hazel is now blind. The other night Hazel had constipation so my parents called the Hospice number and an RN came out. She looked through the medications and found they had not given her any medications for constipation. So she took her blood pressure which was 137/97 (the nurse said this was fine but this seems high to me) and then said she would come back tomorrow. My mother while she was there told her that she hadn't pooped in 6 days. My mom told them previously she was constipated. My mom went and bought her some over the counter medication to help with the constipation but Hazel ended up in soo much pain she pulled her own poop out (Yikes and Yuck). My mom complained about the case manager (RN) in the morning and now the hospice is saying that my Mom wasn't allowed to sign the papers that they told her to sign and that Hazel has to be told she is in hospice. Which really is fine except Hazel might get angry that she is. Is the hospice trying to cover their behinds or fix mistakes? My parents have requested a new case manager and asked that they show up on a schedule as they often just call then show up a few minutes later to give baths, take blood pressure, etc. They also asked them to sit down and explain the medications that they sent over as they are all just sitting in the fridge and my parents have no idea what to do with them. What else should my parents be doing?

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I’m in agreement with Margaret on this one and I also think there’s some communication issues all around. It seems to me that the nurse didn’t treat Hazel because hazel is competent from the sounds of it & she didn’t sign the paperwork herself and she doesn’t know she’s on hospice. If your parents don’t have an active POA or guardianship then.....they shouldn’t have signed anything. I think there’s also the issue if you being a 3rd party to all of this—perhaps the information being passed from hospice to your parents and from your parents to you—the information might be getting mixed up in the process.

Hazel needs to be told she’s on hospice. No one needs to tell her she’s dying. Hospice isn’t always end of life care. Your parents and the hospice staff can explain it as more of a “palliative care”, that they are treating her systems and focusing on the best quality of life.
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squeakylynn5 Apr 16, 2019
They did tell her today she is on hospice. They have a POA when she is no longer competent. The hospice admissions told them to sign the paperwork. Today the head nurse came over and explained hospice, apologized to my parents, and had Hazel sign the paperwork.
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That’s all a bit tricky. For many people, opioid pain killers make them constipated, but that isn’t always the case (including for me). Medicos won’t necessarily assume that the patient is constipated unless they are told or have good reasons to ask. Most patients and carers would have raised it very clearly before 6 days, and wouldn’t have relied on an OTC medication. Yes something went wrong, but it probably won’t help anyone much to find someone to blame.

Hazel at age 98, underweight and losing even more weight, plus sleeping 20 hours a day, is not being realistic if she can’t consider that she may be dying. Perhaps she does need to be told by Hospice, but they can say it and move on – it doesn’t have to be rubbed in. It may be a formal necessity for them to have stated that they are not taking aggressive measures to ‘cure’ her health issues. Her blood pressure is indeed OK – I take all the BP drugs and that would still be a good reading for me.

Appointment times are always a problem. I lost my temper once when I went for an endemetriosis check which required a full bladder, and was kept waiting for an agonising extra hour. Then I felt dreadful when they told me that they had found a probable cancer in the previous check, and that it had taken more time than normal. Perhaps you could ask the hospice team to phone earlier (eg when they get to the previous appointment, not when they leave it), but spot-on times are really difficult.

It’s a very hard time. We all wish it was easier. Try to roll with the punches.
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squeakylynn5 Apr 16, 2019
Hazel takes aspirin. No opioids. They told the nurse on day 3 she was constipated. They called on day 4. The nurse came out on day 6 and did nothing. This is my parents first time taking care of some one that is dying. Thanks for letting me know about the blood pressure.
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I’m not familiar with the Hospice Hierarchy but everybody has a boss or a supervisor. Your parents need to find out who this is at the agency and contact them tomorrow. It sounds like the left hand doesn’t know what the right hand is doing at this agency and for Hazel’s sake, someone has to untangle this. Hazel isn’t getting the meds she needs and sounds like no papers have been signed to make anything official. We are currently in this situation with a home visit physician service and are in the process of dumping them for another agency. We deserve better.
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squeakylynn5 Apr 16, 2019
Thanks I will let them know. They keep asking me what do I think and honestly I have no clue. Sorry about your physician service.
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Are your parents Hazels official “next of kin” or is there another closer relative? Do your parents have any legal authority when it comes to making medical decisions such as a Durable Power of Attorney?
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squeakylynn5 Apr 16, 2019
No other closer relative. They have legal authority when she can't make decisions anymore. They have a medical and financial power of attorney for when that time comes.
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Couple ideas here, first might it be easier for Hazel to understand and go along with Hospice if it's explained to her that qualifying for Hospice doesn't necessarily mean she is dying in the next couple weeks or months, people even go in and out of Hospice care but it does provide a high level of covered (insurance) care and makes both the coordination and the actual care much easier on your parents and probably Hazel. Obviously she knows she needs assistance with ADL's and is fine having help from professionals so it might not be a stretch if you focus on Hospice being a means to an end.

Next there are probably multiple services providing in home Hospice care in your area and there can be big differences in them just like any other service. I would check around do a little more research and see if you can find one that might be a better fit. Check with her doctor's office, the nurses and admin people they might even have a nurse that deals with VNA/Hospice services and knows which ones might be better than others.

Now the constipation, sounds like her system isn't working well in general, she may even be eating less because it's been causing her pain longer than anyone realizes, who knows but there are some things they can try to see if it helps at all. This isn't uncommon for all kinds of reasons, less exercise (walking, moving around helps get stuff flowing), medications, diet and of course various ailments can all contribute to intestinal issues and they can help. So first couple things is Fiber (Metamucil, psyllium husks something like that), plenty of water and fluids. I would look into Milk Kefir too, it's better when you make it yourself with live cultures but store bought is going to help too. Even yogurt with live cultures and or fermented things like sauerkraut, pickles, pickled vegetables are all things that can help rebalance the gut which may help. But again making sure she is drinking enough water/fluids is really important and one of those things that can be hard to get them to do and easy to forget to track. When patients are in bed and not getting exercise they aren't thirsty so it can be a vicious cycle.
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squeakylynn5 Apr 16, 2019
Hazel has pretty much quit eating. She eats 1/4 cup of cream of chicken a day and 3 oz of buttermilk. They offer her all sorts of stuff even her favorite of pickled pigs feet. She seems to want nothing. She has had trouble with her throat and has multiple surgeries. She said she won't do another or get another feeding tube. I will tell them about the yogurt and kefir. Thank you.
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If Hazel is in her right mind, your parents cannot make the hospice decision for her. The decision requires Hazel's own informed consent.

Your grandmother knows as well as anyone that all humans will eventually die. Perhaps the key point to make to her is that hospice does not mean she herself is *about* to die. No one is saying that. It means that her life expectancy is limited, and hospice services are the best choice for her comfort and quality of life.

I can't think what hospice thought they were promising when they said they "wouldn't mention" the touchy subject of Hazel's dying. Unless, perhaps, until they carried out the evaluation they could not know whether or not Hazel was in her right mind.

Signing on behalf a person who is *physically* incapacitated (Hazel is blind) is fine, but it must also be formally witnessed that Hazel understands what is being done on her behalf. Hospice should know the procedure.

I think your parents have done the right thing in asking to go back and start again. They are also wise to have asked for a proper, comprehensible explanation of your grandmother's medications. If this approach works, the hospice provider pulls its socks up, and all goes smoothly from here, will you be satisfied with that or still unhappy?
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squeakylynn5 Apr 17, 2019
My parents will be satisfied. They just want help understanding the medications, help with issues like the constipation, and not to have Hazel ignored. My parents are easy going people that are easily satisfied and very rarely get upset. Thank you all for all the help.
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Can your parents ask to have a social worker come and explain what exactly to expect from hospice. I think that their expectations are not in reality with the service.

1st off, they are dealing with more than 1 client and their clients are very sick and most are dying, you can not expect anyone to say, oh well miss jones, i have another appointment so goodbye maybe you will be alive next time and we can finish washing your hair that took longer than expected because you were barfing your cancer infested guts up. Can't keep anyone waiting can we.

Not trying to be harsh, but this is the reality and if Hazel needed more time, she to would get it in a loving compassionate manner.

The RN not addressing 6 days of no BM is concerning, but so is waiting 6 days to say anything. Was it the chicken or the egg?

I think that the social worker will be able to help them understand what exactly hospice does and how they do it. If not, fire them and get a new hospice on board.

But please remember that all of their patients need to be treated with patience and understanding and sometimes that takes time. They do the best they can and we have to be understanding with them and their time. None of them will ever be able to schedule exact times because of the very nature of the job.

My sister would rip you up if you mentioned she was dying while on hospice, but she was 52 and not sleeping 5 minutes at a time. We appreciated that the caregivers gave her the time and energy to provide the services without making her feel like they needed to be some place else.
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squeakylynn5 Apr 16, 2019
They did tell the nurse on day 4 that Hazel was constipated. The nurse said give it a day and maybe it would resolve on it's own. They called back and then the nurse said she would come out the next day. Then day 6 they come out and do nothing. The head nurse came out today and apologized. She also explained that my parents shouldn't have signed the paperwork as Hazel is still competent. They did explain Hospice to her today. She was not happy about it but she said yes to it as long as they didn't drug her.
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Sounds like you had a rocky start to hospice. Maybe ask for someone from Hospice to review what services exactly they provide.

It sounds to me it was simply a paperwork error someone caught the next day and then took action to remedy the situation. At least a supervisor or someone recognized the error quickly. So no, I don’t think they were “covering up “ any part of this.

Re the constipation being missed was noone’s fault. Going forward maybe a notebook can be obtained & the CG’s (all of you) use this notebook to work to resolve and prevent episodes where this poor person had to digitally remove her stool from impaction.

I hope all these details get resolved in the next few days or weeks.

Good luck!
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