My father is currently receiving in-home hospice care. He has a myriad of problems, the most significant of which is prostate cancer which metastasized into his legs and arms years ago. He also has heart issues, neuropathy, and now pressure sores from being immobile.
He went to the ER about two weeks ago, and spent five days in the hospital. In-home hospice care was suggested, and my mother reluctantly agreed at the time. But she is struggling with letting my Dad go. He is in a tremendous amount of pain, but she will only give him a lower dose of the pain meds that hospice recommends, and not as frequently as they suggest. He is also experiencing a lot of anxiety, but she will not give the prescribed anxiety meds. My Dad is immobile at this point, and difficult to clean. She has made a few phone calls to line up some visiting caregivers and sitters, but not made any decision yet. In the meantime, my brother and I are covering 24/7, spelling each other.
Basically, she still feels like she can make him better. She is trying to force him to eat (even though the hospice nurses suggested against it, saying that it would be even worse for him). Trying to get him to "toughen up" and "get through this." He is lucid at times (probably sleeping 18-20 hours a day though) and is getting angry with her when he is awake.
I can't stand to see him in such pain. Any little movement causes him to wince. The fact that we are not giving him the full amount of pain meds prescribed is weighing on me.
Anyone else been through this type of situation? Is there anything I can do? I've tried talking to her, but she tunes me out, changes the subject, or tells me that I "don't understand him like she does."
You might try to point out to her that she's not treating him in a loving manner -- she's torturing him. The hospice folks aren't telling a novice like your mom to give him enough medication to kill a horse. Instead, it's a very low dose that probably wears off in about two hours.
It's sad -- I remember taking a class on retirement from a guy who said his mother was the worst person to be his dad's POA, because when it came time to make the tough decisions, she couldn't do it and it resulted in three weeks of unnecessary pain and suffering for him.
Loving someone means making those tough decisions. I'm sorry your mom can't make them.
One of my good friends, passed from breast cancer. Her husband wouldn't give her pain medicine because it made her sleep and he wanted her alert to talk to him. When I found out about it, he and I had a horrible fight. Fortunately, she died that night. He was so broke up that within 6 weeks, he married a cute chickie half his age. Another friend kept trying to feed her husband even when he couldn't swallow. The food would just run out of his mouth.
I cannot imagine what I would do if someone said to my father "toughen up". I think I would lose it because seeing him in pain would be more than I could stand. I'm so sorry you are going through this.
Isnt the point of hospice to make sure your Dad is not in pain? Why aren’t the hospice nurses administering the meds? Can you talk to them about this?
On a really bad day, talk w/mom about how bad you feel that he is hurting so bad and try to talk her into giving him the additional medicine. Repeat often - I don't want dad to be in such pain and I know you don't either. We need to give him whatever it takes to help him.
Mom clearly isn't ready to let go....yet.
Hospice is designed to let the patient - your dad - control over his death; that it be peaceful and as pain free as possible. Since mom can't let go, it might be better if dad were placed in a facility with 24/7 care where he can be medicated properly. This will also cause less stress to you and your brother. Your responsibility will be to see dad's needs are met. You and your brother are then free to support dad on his final journey. Mom should be free to visit him as often as she wants but if she starts fussing over him and making him anxious, then she needs to go home.
In the meantime dad's hospice provider should be providing the appropriate equipment - bed and mattress to address the pressure sores.
My husband's father was diagnosed with stomach cancer and was given 6 months (this was before I knew my husband and at a time when people stayed in the hospital). While my MIL knew he was dying, I'm sure she also was never ready for the day to come. Her sons worried after their dad died that their mother was soon to join him, she was so heartbroken. However, one day at a time and she survived many years. Her husband was her life and I believe she always carried the some pain of the loss with her for the rest of her life.
I wish you all the best and pray that your family is blessed with peace and love.
Ask if a patch can be used rather than oral medications for both the pain and anxiety. The patch would be easy to apply and deliver the correct dose.
What many people do not understand or have a hard time with is this...
The prescribed dose of morphine or other pain medication that Hospice, or any doctor for that matter prescribes will not "kill" the person.
If a person is drowsy after the medication it is a common reaction to a lot of medications but it will also allow the person to sleep more comfortably while not in pain rather than a fitful sleep in pain.
The Hospice Nurse needs to explain better the importance of giving the proper dose at the proper time.
I understand what your mom is going through. She is facing the fact that her spouse, her husband of (I presume) many years is dying. And dying before she is ready. (like you can be ready for something like that, still comes a shock)
Let the Hospice Chaplain, the Hospice Social Worker talk to your mom.
And I would also ask for a Hospice Volunteer to come. Not only will a Volunteer be there for your dad, to sit with him if mom needs to do something but most likely a Hospice Volunteer has gone through the very thing your mom is going through.
And I understand why your dad gets angry when he is awake. He is in pain and the person that can help lessen his pain is not doing what needs to be done.
I flashback to when I was caring for my mom on hospice in her home in her final days. I’d been away from my home in another state for 13 months, extremely sleep deprived, and near a meltdown. Mom was unconscious and her face grimaced like she was in pain. I wanted to administer the first and lowest dose of morphine. My older sister went nuts, “NO! IT’S A CONTROLLED DRUG!” and just went crazy. Finally, I called hospice and had a nurse on speakerphone with my sister. The nurse was blunt, “It’s past time to start using the morphine. Your mother is showing signs of being in pain.” That snapped my sister out of her state. Mom was at least comfortable in her final couple days.
Best wishes to you and your family, Oldestson.
1 - Pain medication makes it easier for him to endure treatment and movement. She can give the "lower dose" to start. If the pain is still a problem in 30 minutes, then give an additional dose to equal the higher dose.
2 - Instead of forcing food, suggest that she "offer" several small meals and treats. Dad can decide to eat or not while he is awake. He will eat enough to sustain him when he is hungry.
3 - Tell her that you and your brother are starting to burn out and need "helpers" to give you both breaks. "Help" her narrow down her caregiver list. "Make" her sit down and "make" phone calls to get those sitters/caregivers committed to a schedule. Tell her that having other helpers keeps you and your brother "healthy" and able to help longer. If not, both of you will probably sustain an injury or get ill.
By the way, Covid protocols are a very real problem. Friend’s husband was in nursing/rehab center late 2020. That center had 1 visitor per day (family members alternated days), then only 1 visitor, and then no visitation. Other homes in the area were one 1/2 hr visit/week, a window visit, not accepting new residents.
Your Mum is in denial and needs some mental health support. My local Hospice organization offers counseling to families before and after death. Can you look into that for Mum?
Uncle's bones were so brittle that they would break just in the act of moving him in bed.
You or your brother need to call in help. Mum is not able to. Tell her you two need the help, not that Mum needs the help, nor Dad. Let her know help will allow you to spend quality time as a family.
You and your brother need to have a conversation, just the two of you regarding how you can best support Mum after Dad dies. Has Dad preplanned his funeral? If not, call your local funeral home and arrange a meeting, so you know what to expect when he dies. If he has preplanned, still call the funeral home and let them know death is imminent and ask what the procedure is when he dies.
APS won't be horrible to her, they will understand her point of view and her terrible circumstances; but they will put a stop to this. Your father *needs* the help he has been prescribed, it's their job to make sure he gets it.
Medical POA only kicks in when dad can't make hiw own desires known. If dad wants better care, he gets better care.
How about BOTH of them move into a nice AL together?
Does the hospital bed have an alternate prrssue mattress (it plugs in and inflates/deflates on a regular basis)? That's what dad needs.
(((((Hugs))))). This must be so very hard.
What some call hope, others see as denial 🙁.
Unless the right Doctor or Hospice Nurse gets through.. things will continue the same.
While not being IN this situation I have witnessed many times from the sidelines. The 'young, fit husband' who was an 80+ yr old with heart disease & cancer. The 'strong fighter who always gets better', again 80s, diabetic, kidney failure. The 'Best Mother' with fractured hip & late stage dementia.
I get that no-one wants their beloved Mother defined as a demented fractured hip. Keeping the connection, a good label helps humanize what can be a medical environment. But in that case, the denial also brought feeding despite the best Mother becoming more unresponsive. Aspiration, pneumonia, demise followed.
I agree with Barb. Calling for Dad to be moved (for his comfort) to another setting may help.
If it could be done to give Mom a break, rather than devalue her care would be great. Her care approach is hope & cure focused. Care & comfort may be the direction needed now.
Does your mom have dementia, or significant cognitive issues? It sounds as though she is not understanding, or accepting of the fact that your dad is apparently near death. Allowing his medical needs to be handled by someone who is either not competent or in deep denial is truly cruel. The fact that he has pressure sores is a pretty good indication that he isn't getting repositioned often enough-- because of the pain--because he is not getting the meds. It's a viscious circle.
Is there a hospice facility dad could be moved to? Your other choice is to admit him to a nursing homecwith hospice services there. Your dad deserves to be pain free and well looked after.
I would not bargain with mom or try to play nice. I would say in a matter of fact wat that dad needs more care than he can get at home and arrange a move.
Dad needs--asap--an alternating air pressure mattress, which will reposition him automatically. Hospice should provide this.
Others will be along with different suggestions. Please keep us updated on dad's situation. We care!
Dad is lucid when he is awake, for the most part, which gives her some hope. He does say a few non-sensical things every now and then, but when he is awake he can generally communicate. Usually he just talks about the pain and how he needs to be re-positioned. Hospice has provided a hospital bed, and he constantly re-adjusts the bed via the remote control.
There are hospice spaces at a couple of the local hospitals, but they are viewed as "transitional" until one can be sent home with hospice services. Mom doesn't want to transfer to a rehab or nursing facility, since she feels she may never see him again due to COVID protocols. So that is playing into her thinking.
I've tried being very direct with her. That doesn't work. She gets defensive and digs in further. Really frustrating ... I'll make some more phone calls this week and see if I can find some alternative care options. I am not his medical POA though, so I feel she has veto power over all of his care options.