Hospice Care
Questions to ask, Ideas, advice and experiences to share.
Hospice Advice
What to ask Hospice About Care:
1. What experience has his/her nursing team and medical director had with Glioblastoma?
2. Will your medical director consult with his/her primary caregiver (or other medical professional) on symptom management?
3. What will happen if I can't manage his care at home or he becomes medically unstable?
4. What resources do you have for respite?
5. What resources are available to help the two of you deal with the emotional fallout from their approaching death?
6. How will you support us in his last few days? What nursing support will we get? Will you be here with us when they die? Restlessness (terminal), Lorazepam, Haldol, morphine, Fentanyl patch, etc,
Help with sleeping: Ativan, Melatonin, and Atarax
Restlessness (terminal): Lorazepam, Haldol, morphine, Fentanyl patch
For hospice- Make sure you have all the liquid meds in the house and know how to administer them so your wife/husband does not choke on them. Find a nurse who has GBM EXPERIENCE. Administer meds prophylactically, Before the problems arise. Note: Give nausea meds round the clock...don’t wait for it to hit... We kept my husband at home successfully until his last breath. Be aggressive about following the med protocol. It is for the patients comfort. ❤️
I found that home hospice workers advised and provided the pads, depends, wipes, body wash, lotions, salves, lip balm, mouth swabs, some meds, basin, sheet for hospital bed, special puffy bandages for pressure points, wound care spray etc. The bath aid comes once or twice a week and will check for bed sores. There is a thick salve to apply if spots turn red to hopefully prevent bed sores. Our RN checked in weekly at first then more frequently as needed. Hospice staff are angels and provide very very much appreciated support.
Will your spouse be on home hospice? If so, don’t buy anything, they supply you with everything they will need. Hospice is wonderful. They were in my home 3-4 times a week. Towards the end, it was more frequent. They will make sure you have everything you need.
Ok. Your spouse is on hospice. Give them the drugs (I assume he has liquid morphine…) Give it to them as well as the anti-anxiety drug - around the clock. Don’t wait for pain to come. Stay ahead of it. Hospice is for comfort. If your nurse does not leave you with the proper medications change nurses..... They should be getting something every 2 hours and morphine every 4 hours. The anti-anxiety drug is administered every 4 hours, dosed so they are getting something every 2 hours. Increase doses if necessary. There should be no suffering while on hospice
Briviact (anti-seizure med) interacts with morphine (extreme sleeping). Be careful with that medication.
Things to know
1. If your wife/husband is suffering in any way, breathing hard, not drinking or eating, running a fever or experiencing any other symptoms, tell hospice right away - no matter what time it is - and request their assistance to manage the symptom.
2. If you are unable to move or properly clean or feed your wife/husband, tell hospice and request their assistance and/or equipment. Take no chances that your wife/husband might fall or be dropped or hurt or that you might be hurt. Also, if your spouse is well enough to use a wheelchair, be aware that they can fall forward out of the chair in the blink of an eye. Ask for a fall pad/cushion.
3. If you are not comfortable with your lead nurse, say something to hospice about changing him/her out with another. No medals are available for being long-suffering or more discontented than you otherwise need to be during this highly critical time.
4. Especially during weekends and holidays, hospice can get overwhelmed so if you aren't getting the help you think you need, pester. Be nice, but pester. Call at any time of the day or night, but the best time to call and alert them to a priority need is early in the morning before shift change (usually 7am).
5. If you have competent family or a close friend helping you, get them to call hospice for what you need.
6. Keep hospice phone numbers nearby and easy to locate. Know the name of your assigned nurse's head nurse or team lead just in case you need to escalate a requirement. Do not be shy about your real concerns.
7. Keep your cell phone on you (e.g., like in a pocket) at all times. You could end up in an emergency situation (e.g., your wife/husband falls, no one is around to help and you don't want to have to leave them, except to let medical personnel in the door.)
8. Hospice can provide all the equipment you will need, for instance a hospital like bed which is essential to lower/raise your wife/husband so that you can best care for them. That hospital like bed requires an extra-long twin fitted sheet that no one really has. Make sure you have or get several (4 to 6) twin flat sheets. You can tuck these. You'll need several to be able to keep your spouse in clean linens.
9. If your wife/husband is still mobile, but is a fall risk if they try to get out of bed unassisted, a baby monitor will enable you to move around the house, but still know what their activity is. Also try driveway alarms positioned under the bed.
10. Do everything you can to keep technology out of your wife/husband's hands. Unfortunately, as our loved ones start failing cognitively, they are not aware of their growing inability (and sometimes it might not even be apparent to us) but they will still try to program DVDs, cell phones, laptops, etc. However, because there are gaps in their memory and logic, their programming attempts can result in the deletion of important files and photos, they can create new unknown and irretrievable passwords, and can so confuse software that the device is basically broken to the extent that only an expensive technician can unscramble it.
11. Don't be surprised if you do several laundry loads a day. Pull ups (while your wife/husband is still mobile enough) and incontinence pads on every seat help reduce the laundry load. Once mobility has ceased, then you'll need to use adult diapers.
12. If you need a wheelchair, toilet with handles, lifting device or any other equipment, do not hesitate to ask hospice. Be careful to ask before you need them. A brain cancer patient can degrade very rapidly and you'll need equipment to properly care for your wife/husband.
13. For ease of clothing your wife/husband, you may wish to use soft cotton t-shirts. If you slit the back of the t-shirt from the bottom hem of the shirt to the hem of the neckline, you'll have a shirt you can easily slip on and off to keep your spouse covered and clean. Keep a supply of them ready.
14. Keep a good, reliable thermometer handy and take your wife/husband's temperature regularly. If you notice any fever spikes beyond 100.4 (Fahrenheit - 38 degrees Celsius) [or whatever the medical team tells you the magic number is], call hospice immediately who will probably suggest you treat with acetaminophen (aka Tylenol). Track temperature carefully. The higher the fever and the more constant that fever (absent some underlying reason like an infection) may be indicative of how close your wife/husband is getting to transitioning.
15. Make sure you have fresh (not expired) acetaminophen and ibuprofen available. Hospice can provide these meds for oral administration or as suppositories
16. Hospice can also provide special mouth cleanser and sponges for cleaning your wife/husband's mouth. Make sure you ask and get these items. That said, many people find that cleaning out the inside of the cheeks with a non-abrasive, damp cloth is easiest. Cleaning your spouses mouth (including cheeks) should be done at least daily. Note that many individuals will squirrel away pill type medications in their cheeks and not swallow them. It's a good idea to check and make sure medications were swallowed.
17. Keep a small white board or journal handy to track exactly when you gave exactly what medicine to your wife/husband. This is essential for knowing when the next dose of meds can be given. The best procedure is to administer meds right on time.
18. At some point your wife/husband will stop drinking fluids and eating food. After a couple of days not drinking anything on their own, your wife/husband will likely become confused, disoriented, have muscle cramps and the other typical symptoms of dehydration. If hospice will administer IV fluids, those fluids will enable you and your wife/husband to have a few more days where conversations or connection can occur. About 50% of hospices will administer IV fluids.
19. Keep an electrolyte replacement drink (something from a pharmacy- like what you give to children when they have diarrhea - not Gatorade or other sugary drink) in the pantry and mix into your wife/husband's water if your their encounter diarrhea or stop drinking for a long period and urine gets dark.
20. Do NOT force water or food if your wife/husband is sleeping, even if they stay asleep for days. Forcing water or food when they are asleep may cause them to aspirate (breathe down) that water or food into his lungs which may give them pneumonia. Pneumonia can be a lethal complication.
21. If your wife/husband stops eating and drinking, and just sleeps most or all of the day, their lips are likely to become very dry. Moisten frequently with a lip balm or a bit of Vaseline. Hospice can provide this for you if you need it.
22. Do not engage in disconcerting conversations around your wife/husband when they are "sleeping" (even if the hospice nurse says she is in a coma). Hearing is the last sense to go, so assume that they can hear and possibly even understand everything said in their ear-shot. Recent studies by a neuro-scientist say that the brains of 15-20% of people in a deep coma/vegetative state still show conscious activity under an MRI (!). So, if you need to tell your wife/husband something important, do that; it is possible they hear and understand you. Similarly, if someone has something tough or ugly to say, it should be taken outside or into another room.
23. Keep regular track of your wife/husband's heart rate. In the beginning of the transition process, the heart rate may be high, sometimes going very high (like into the 140's, 150's, 160's) and then as the process comes to a conclusion, your husband's heart rate will start to taper. Once it starts, this tapering can go fairly quickly. Be ready with family, friends and any clergy you might want to have present.
24. Should your wife/husband's heart rate start racing as described above, your husband is likely to have a tough time breathing. He may be gasping for air like a runner. If you notice his heart rate getting high or his breathing getting labored, have hospice provide oxygen as soon as possible. That will help some.
25. Plan your last religious readings and prayers sooner rather than later and have the materials nearby.