Hospice tips?

[umsami]

So it looks like my Dad will be discharged from the hospital to home with hospice care.  I don't think he'll last a week, to be honest.  I'm at peace with it, but looking for tips form people who've been there, done that.

 

My understanding is that our hospice will only send a nurse 1x/week to check vitals, which means we'll likely hire a home health aide for a few hours each day to help with bathing/toileting/etc.

 

 

[PeterPan]

The bed they brought was a TwinXL. When I bought the sheets for it, I bought a nice blanket as well. Now we still have that blanket, and it's sentimental. My MIL spent a year wrapped in it, and now that they're both gone we use it.

 

Hopefully your nurse will come more often. I think that's a good idea to hire someone if they don't. The company is good too. The hospice nurse stayed with us the last night, so we weren't alone.

 

Will this be at your house? The breathing machine they put him on at the end for oxygen (to keep him comfortable, palliative) was noisy and gave me a bad headache. It might be stressful for your kids. 

 

It's a very special time.

[Seasider]

So it looks like my Dad will be discharged from the hospital to home with hospice care. I don't think he'll last a week, to be honest. I'm at peace with it, but looking for tips form people who've been there, done that.

 

My understanding is that our hospice will only send a nurse 1x/week to check vitals, which means we'll likely hire a home health aide for a few hours each day to help with bathing/toileting/etc.

If he is that near to end of life and not stable (i.e., declining rapidly), I'd think the visits would be more frequent. I would also think you should have a hospice nurse on call? Both things to ask about. It is covered by Medicare.

 

I am sorry for this impending loss.

[fairfarmhand]

If he's in pain, a very thick foam matress pad (I think the 6 inch was best) helps with the hospital bed.

[PinkyandtheBrains.]

We hired a home health aide for my mom, we kept the aide even though she was in hospice at the hospital. It was nice to have someone with her when we couldn't be, who could check vitals and such as well. 

 

 

Hospice came in daily for both my parents, I think all the hospice agencies were daily here so I assumed daily was standard.

[Free Indeed]

Been through this several times.... I'm sure hospice is great in some ways- but while they were educational as to what to expect in the cases I've dealt with them, the actual physical needs they weren't there enough to help for. I learned from our first time to be ready with "bed pads" like they use in childbirth because control of bowel function decreases quickly. I don't mean that to sound horrible, but I was not prepared for that the first time and was limited on how I could handle it. Granted, I was 15 and the main "adult" in charge because my mother was not much help. Make sure you can quickly obtain liquid pain medicine. When they can no longer swallow you still want to be able to control pain. I second the memory foam on top of the hospital bed if you have a hospital bed. Those are the main things I didn't consider until I needed it. Sorry for your loss.

[TechWife]

Hospice should provide an aide to help with some things. It’s a balance - if the family provides too much paid help, Medicare won’t cover any aides. I can’t remember, thoguo, you might not be on the US.

[displace]

(Hugs)

 

I'd second getting a home health aide if the hospice workers will come so infrequently. They may have them and only mentioned nurses because they are more expensive. Depending on the situation you may want mattress pads, bed pans, bedside toilet, body bath wipes, straws if he is still drinking but can't sit up to make it easier to drink, maybe a source of favorite music or book on tape (like a religious text read aloud?).

 

Some hospice will notify funeral homes/crematories, but others won't. Hopefully, legal and personal end of life desires have been discussed already (wills, funerals, wishes, last visits with relatives). Some people want to see visitors and some don't.

 

:(

[ErinE]

So it looks like my Dad will be discharged from the hospital to home with hospice care.  I don't think he'll last a week, to be honest.  I'm at peace with it, but looking for tips form people who've been there, done that.

 

My understanding is that our hospice will only send a nurse 1x/week to check vitals, which means we'll likely hire a home health aide for a few hours each day to help with bathing/toileting/etc.

 

Double check this. Hospice was once a week for a certain time period for two of my relatives, but more frequent when the end grew near. It would only pay for a limited amount of 24-hour care before transfer to a hospital was required, but there were daily visits in the final weeks.

[Selkie]

Hospice came to the house daily during the last several days of my mom's life. They weren't there when she died in the middle of the night, but they asked us to call them when it happened and they then notified the funeral home for us.

 

As others have already mentioned, a comfortable bed is very important, as are pain meds. My mom was also taking an anti anxiety drug during her last few days. On the recommendation of the hospice workers, we got some eye drops to keep her eyes from getting dry, and they also gave us some little sponges to moisten and swab her mouth with. 

 

I'm so sorry you're going through this.  :grouphug:  :grouphug:  :grouphug:

[Annie G]

I encourage you to keep a notebook where you write down things. Everything. You might be exhausted and will certainly be emotionally overwhelmed and you might even find yourself forgetting when you gave meds or when and how much the patient is eating.  Write down questions you have.  MIL passed away in August and I haven't gone back to read the notebook I kept while we cared for her but I know dh wants to eventually go back through it. It really helped us during the three weeks she had hospice care.  Towards the end I was jotting down good things- like the time mil had a moment of clarity and had a heartfelt conversation with me.   Just writing things down sometimes helped me process them. 

 

I'm so sorry. :grouphug:

[Murphy101]

So it looks like my Dad will be discharged from the hospital to home with hospice care. I don't think he'll last a week, to be honest. I'm at peace with it, but looking for tips form people who've been there, done that.

 

My understanding is that our hospice will only send a nurse 1x/week to check vitals, which means we'll likely hire a home health aide for a few hours each day to help with bathing/toileting/etc.

I’m in the same boat. My dad was discharged in another state, dh and my brother hopped in a truck the same day and brought him home to live with us (me) and have hospice.

 

My advice. Call hospice TODAY. Call around to your local friends and church to ask for a hospice recommendation. Tell them your situation. They will set you up with everything you need. Including the home health aids, his hospital bed and anything else. His prescriptions are delivered here. They even bring soap for him. You name it.

 

Mine is 24/7. If I call, they come. If we discover we need something, they bring. Last night he peed in the Tupperware bowl I set next to his bed for his dentures because he couldn’t make it to the bathroom. This morning they delivered a bedside commode. This afternoon he was coughing a lot, so they brought out a nebulizer and meds to ease him.

 

They have been fabulous. A good hospice provider makes all the difference.

 

NONE aid this has cost us anything. It’s all 100% covered by Medicaid.

[6packofun]

If he needs ANY supplies (disposable bed pads, etc.), ASK!  We had no idea and I bought some adult diapers, etc. myself before the hospice nurse caught on that they weren't from THEM and then relieved me of that burden!  They will know what to do and how to prepare you; if you notice any changes as he progresses toward the end let them know because they can help with things you might not have thought of.  

[Hyacinth]

Echoing what a previous poster said about keeping a notebook. We had one in a central location where we made notes about medications, pain levels, etc. This was so helpful with a few of us taking shifts being there.

 

This may be weird but I'm going to throw it out there anyway. In my dad's last days we got an ink pad and took a few fingerprints from him. Then we turned those over to an Etsy artist who made engraved charms and keychains with the fingerprints. It's a sweet keepsake that I'm so glad to have.

 

((Hugs))

[Lori D.]

:grouphug:  So very sorry.

 

 

My neighbor and dear friend just walked this past last summer. She brought her dad home from the hospital, and they were told that he would be gone in 2-3 weeks. It actually was 3 months, and the last month he was not eating or drinking (just moistening of mouth with special sponge). I had no idea that a body that was slowly shutting down could survive that long with food or water. So just be prepared that it may take more time, and require more stamina from you and your family than you originally thought.

 

Are you part of a circle of friends or group that could provide meals for you and your family? (Meal Train is a great website.) That was a big help to my friend, not to always have to shop/cook and keep up the house while also caring for her father. My friend or her husband had to be there 24/7, so even getting out to get groceries was difficult, as her husband works. Having friends stop by with a meal, or just to stop by to visit was a blessing, as my friend felt very house-bound.

 

Will your father be at all mobile? My friend's father was very weak, but up until the last week, he still could get up, so you'll want to watch out for falls. Also incontinence on chairs or couches, on the floor of the bedroom (trying to get up in the night), and in the bathroom itself. Dear friend had things cleaned, but needs to get two new couches, and carpet in the bedroom her father was in. I think if she had realized that was a possibility, she would have covered furniture and the carpet with plastic, which would have also made clean up much easier.

 

He was frequently confused, and tried to leave the house (the first time he actually made it to my house next door). He also had days where he was living in hallucinations. That was not something my friend had expected, and her father said a few things that were hurtful when he was in the confused/hallucinating state.

 

Are there any legal documents that need to be signed by your father (and is he in a mental state to do so)? And power of attorney? Does your father have a Do Not Resusitate document? And keep all of those documents handy. Also, it's very helpful if you can be legally signed on to his bank account to take care of things financially for your father.

 

You may want to hire a health aide to come in every other day to help bath him and to help with changing sheets and other things like that.

 

While it was an incredibly difficult time, my friend was so grateful to be able to care for her father in his days.

 

May you be granted strength and peace in this difficult time.  :grouphug:  Warmest regards, Lori D.

Edited November 21, 2017 by Lori D.

[Ottakee]

My MIL is on hospice right now.  I agree with asking them about what they can provide and don't hesitate to ask if they can do x or y for you.  Ours even offers 5 days for free in their hospice facility which is very nice for respite or at the very end.  

Make sure that you notify them of any pain.  They have awesome medication options for pain relief and there should be little to no need to have pain at all.  They also have hospital beds, bedside commodes, walkers, wheelchairs, lift chairs, disposable bed pads, adult incontinence supplies, etc.

[Murphy101]

Ugh. I second or third getting as much legal paperwork done pronto. It would reduce a lot of vulture drama problems in dealing if Dad had listened and done this stuff over a year ago.

[happi duck]

(hugs)

[umsami]

Thanks so much everybody.

 

Right now, it looks like he'll be at home with my Mom (85 years old as well), but I've offered for him to come be with us.   Legal stuff is thankfully all taken care of as is a DNR.

 

This is in Central Florida and apparently there are two hospice providers.  I spoke with them during a previous crisis, and chose the one I liked best.  In speaking with the nurses at the hospital, they also recommended this one over the other provider.

 

The biggest problem I think will be toileting and stuff, as he's very weak, yet very proud.  He's refused any sort of depends or pads, but had accidents prior to going into the hospital this last time.  My parents' church family is really wonderful and will no doubt help with meals and such. 

 

I'm letting my kids know that Grandpa is likely getting ready to move on to his next adventure.  He and my Mom both want to be cremated, yet my Mom doesn't want my kids to know that.  She thinks it will be traumatic.  What do you all think?

[Annie G]

 

I'm letting my kids know that Grandpa is likely getting ready to move on to his next adventure.  He and my Mom both want to be cremated, yet my Mom doesn't want my kids to know that.  She thinks it will be traumatic.  What do you all think?

 

It *might* upset the kids to hear about cremation right now, while grandpa is alive, but I think once he's gone they are less likely to get upset about it.   Death is a natural thing and hiding things from them isn't necessarily helping them learn to cope. 

[Halftime Hope]

A third vote for the notebook recommendation.  My mom was on three round-the-clock pain and anti-anxiety meds, and keeping the dosing schedules straight was essential. 

 

We found that it took three adults to maintain round the clock care for her, so two adults could get at least one good night's sleep, then one adult could function for work, while the second adult who had slept took care of her, and the one who pulled night duty slept.  My 84 year old dad was incapable of helping much, and certainly not cognitively able to do intensive care-giving. 

 

ETA:  Just a random thought: playing music from her young married years that I knew she enjoyed was a comfort to me on the nights I was up with her. 

 

 

Edited November 22, 2017 by Halftime Hope

[hornblower]

no advice, just  :grouphug:  

 

[displace]

Is cremation something personal for them? Like a fact they are telling you because you'll be helping but otherwise they may not discuss with you or others?

 

If so, I'd respect their wishes by keeping the information private for now. Cremation, depending on the kids and their religion, may present a lot of ... discussion. Discuss whether the kids will want to visit and what your dad wants and what you think. If they will be visiting now but there's a chance they will be stopped from visiting, explain why. Explain about confusion and consciousness so they can understand. Sorry, I don't remember your kids' ages so disregard as needed.

[Murphy101]

I suggest getting the blue pads and the bedside commode. He may fight about if asked but quietly be grateful it’s there if it’s just matter of factly left in the room.

 

Also, even if he turned down the home health aid (that’s who does the bathing and such) go ahead and schedule them to come out. That way he gets comfortable with it and they can discuss options with him. For example, he might be okay with entering the shower stall with a towel on his lower half and just letting them wash his hair. Or a sponge bath where he isn’t as nakedly exposed. But he might not be willing to admit that with you.

 

As for cremation.... idk. I think it depends how it’s handled. We’ve been to funerals for the created and buried and entombed.

 

My kids were a bit bothered (trauma would be a strong word) by the complete lack of any life celebration for their great grandpa. No memorial. No service. Nada. Just a quick prayer over a box in the ground and everyone went home.

 

Cremation in itself wouldn’t bother them. But there should be some way to celebrate the life and grief the death of the loved one whose passed.

[Murphy101]

I’d save explaining how the body is handled for when things are settled and I’d discuss it then in an effort to prepare them for what to expect. The unknown and anticipation can create far more fear.

[gaillardia]

My mother was stubborn about allowing us to call hospice and when we finally did, she only lived a few more days. 

Pain was a big factor and she was dying but afraid of becoming addicted. We called the nurse whenever we were freaked out or had questions. It helped. I don't mean we were a mess, but there were things happening with her that we hadn't expected. It was hard.

So ask questions. Keep on top of your father's pain. I don't know how different it will be for anyone else, but the nurse came in every day, sometimes twice a day and she was there with us as Mom passed away. 

I've known people who were dying and their families were putting out the announcement to come see their family member. Well, I totally disagree with that line of thought. From what I read and in my mother's experience, the circle begins closing. My mother didn't want certain people to come see her AT ALL. And after a period of time, the only people she agreed to allow in were the immediate family, clergy and the nurse. She didn't want to be bathed. Her organs were shutting down. No, it was just time for her to be at peace.  :grouphug:  :grouphug:  :grouphug:

I know it hurts. 

[HS Mom in NC]

My SIL was transferred to hospice care a week and a half ago.  She will likely not make it more than another day or two.  Last Friday my husband, my FIL, and BIL went to the cemetery to work out all the details for her burial.  It's going to make things go smoother when she dies and they don't have to make those decisions in the peak of their grief.

[StephanieZ]

Hospice should do *much more* than 1/wk nurse visits. You should be able to get several times/wk bathing aide and other services as well. There are typically more than one hospice choice in each area. You can google up options. It is the family/patient choice on which hospice to use, and it's up to you to negotiate/discuss care plan. So, if you would like more help, please seek it through hospice. Google up what they are supposed to offer, and demand (nicely) what might be helpful.

 

IME (extensive experience), hospice aides/staff are a MILLION TIMES better than any supposedly comparable service you can hire. This is why (besides the money), it's ideal to have hospice provide you with as much services as possible.

 

Hospice can/will provide all needed medical devices/hospital bed/toiletries/pads/etc. Just ask . . .

 

Hospice gets paid a set amount per day (plus various stipends for specific services) . . . If they are a for-profit, it is in their best interest to minimize the care they provide . . . FYI. (Nonprofit hospices are best, IMHO.)

 

Be prepared to safely store highly dangerous narcotics. If you have children in the house or anyone that isn't 100% reliably trustworthy around drugs, invest in a small drug safe. Help secure the drugs after death. 

 

(((hugs)))

 

 

 

Edited November 22, 2017 by StephanieZ

[Ellie]

:grouphug: :grouphug: :grouphug:  to all of you. :crying:

[eternalsummer]

...and if that doesn't help, there is a contraption that is like an air-mattress with tiny holes in it that lets air flow from underneath.  There is an air pump that keeps the flow going.   It makes for a less-sweaty rest and it relieves pressure that can lead to bedsores.  I don't know if they offer this in-home, but when my dad went into the last-days facility, that was the first thing they put on his bed and it made him so much more comfortable.

 

Yes, my dad had this air mattress contraption.  He had developed bed sores in the hospital (bad ones) and it made it not as bad; they had one for him at our house when he came home on hospice.  

[HS Mom in NC]

She died peacefully this afternoon surrounded by family and friends. Her kids are 12 and 16. It's so good to know all those details are taken care of.

[Seasider]

She died peacefully this afternoon surrounded by family and friends. Her kids are 12 and 16. It's so good to know all those details are taken care of.

I'm sorry for your loss. May the God of all comfort be with your family.

[happi duck]

She died peacefully this afternoon surrounded by family and friends. Her kids are 12 and 16. It's so good to know all those details are taken care of.

Sorry for your loss.

[Murphy101]

Be prepared to safely store highly dangerous narcotics. If you have children in the house or anyone that isn't 100% reliably trustworthy around drugs, invest in a small drug safe. Help secure the drugs after death.

 

(((hugs)))

This. I keep the narcotics in a lock box that I and my Dh have the key for on our van keychain.

 

While so far this hospice has been nothing but wonderful, I know of two where the liquid morphine was stolen by someone on the hospice staff. A complaint was filed for each and taken very very seriously and resolved pronto. But still I'd rather not need to file a complaint. And yeah, you just never know who might be having a drug problem you don't know about, family or otherwise. And I have a very mobile curious baby.

[gaillardia]

She died peacefully this afternoon surrounded by family and friends. Her kids are 12 and 16. It's so good to know all those details are taken care of.

:grouphug:  so sorry for your family's loss  :crying: