My husband and I have been living with his mother for 3 months now. She has stage 4 kidney failure, COPD, congestive heart failure, a-fib, pacemaker, incontinence and more. The running line from her hospice nurses is that everyone is on board BUT her.
I am starting to resent the fact that she still wants to go to her Drs and such. She qualified for hospice and is steadily declining before our eyes. Why? Why won’t she accept what is a natural result of the aging process?
She sits in a recliner all day, sleeping with responding, barely eats or drinks, has to be pushed on the rollator to the restroom and such. I am so tired! I am her main caregiver all day long and I’m burning out. I have a life, house, animals and family that I am neglecting to care for her. It sure would be easier if she just would realize where she really is. She has all these appointments lined up at our expense and I just don't get it.
Sigh, I’m seriously struggling! Any help?
Secondly, I will preface this comment by saying I am all for Hospice and end of life decisions. I was a nurse. I know the torment of not accepting a decent end. It is literally a physical and mental slow torture of yourself and your family if you cannot recognize that we all live and we all die. BUT, as a nurse, I will ALSO tell you that this is in the hands of the person him or herself, not family, not well meaning friends. This is for the patient and the doctor to discuss together about Palliative care, Hospice and etc. Has the doctor attempted these discussions? Have YOU attempted these discussions??????? And does the elder STILL wish to fight on.
Because this is a PERSONAL decision belonging to each of us as an individual. It is not the decision of our family, friends, or even of our doctors as long as we are competent to make our own decisions. Please NEVER push someone to "accept" an end they do not wish to accept.
If you are personally struggling in care, then you may be facing YOUR OWN limitations, not that of the elder. So you may need now to consider long term facility care. Again, YOU don't pay for this. The elder, and the State if they are broke, pays for this. But THIS is the ONLY decision that is yours to make. I wish you the very best and am so sorry for all the pain now.
She does say things to others that she is declining, just not us.
Her copd dr wrote the order for hospice so she feels she can see the others. Especially when it involves her pacemaker. Her primary care dr which she loves said that she maid the right decision about going on hospice.
She will not improve. She is declining. I don’t see us having her with us by spring time. I have had family on hospice many times in the last 2 years (fil, mom, dad and aunt) none of which behaved in this manner. I do not want to push, that’s why I posted the question. I just can’t keep loving this lie every single day!
Have you given some thought to returning to your home and life, and letting the responsibility for caregiving fall on your husband's shoulders?
Your MIL has the right of self-determination. She can pay for transport to appointments and caregivers.
Hospice comes with a doctor. That's her doctor now, not all these other specialists. I agree with Alva -- you should not be paying for there doctors, and frankly, I think it's unethical for them to be seeing her knowing she's on hospice care. That's just a money grab in my opinion.
Simply tell her that all medical care goes through the hospice doctor from this point on. That's paid by Medicare, so you don't have to break your finances over this.
Keep some compassion there, though. It's got to be tough being one of the last ones of your generation to go, having seen the ends of so many others before you. Death is scary for a lot of people, and merely snapping your fingers doesn't make that fear go away.
I would quietly call and cancel the appointments. Remove any reminder of them and give vague answers if she asks.
Hospice will cancel her if she starts going to doctors, Medicare won't pay for both. Does she know she will lose her in home help if she pursues treatment?
Does she have a pastor or believe? Maybe getting the hospice chaplain to visit could help her come to terms with what she is facing.
I wouldn't try to talk to her about EOL. She's not ready and there is really nothing to gain for you or her by talking about it. Learning to ignore the chatter that she is creating will help you.
My dad said to put him in the back of his truck and haul him to my house. My mom has said just flush her ashes down the toilet. Obviously, I couldn't do either one, so I am doing what I think they would like. My dad got scattered on the farm that held his heart and my mom will probably be scattered in a casino garden, because that's what holds her heart.
Strategies - Contacting those specialists and explaining that she is now on hospice and that she is homebound (cannot leave home without significant assistance), sleeps 18 hours/day, eats less than 2 full meals daily, and is exhausted by effort of seeing MD in office. Let them know that unless some urgent issue comes up, you would like to discontinue regular checkups but will call if an appt is needed.
Then tell your MIL that the appt. was rescheduled by the MD office, MD on vacation, car had a flat tire yesterday and you didn't think you could get here there this morning..whatever 'little fibs' you need to delay the outing. Reduce any signs that might remind her of what day it is, or names of other MDs, etc.
"Out of sight" more easily becomes "out of mind. "
If she gets really agitated about MD appt, go make a call and tell her you left a message at office...and get focus on something else.
On some level she understands what hospice means, and knows that her body and mind are failing. Struggling to maintain the illusion of improvement by continuing to see specialist MDs (who probably are not making any changes at all when she visits) is a way of holding onto hope.
Helping her let go of this hope can make space to have beauty and hope in some other way at home. Hospice social worker and spiritual care person can help with some life review which focuses on positive experiences.
You need a break. Can you and hubby arrange that you will have 24 hours once a week (so you can go home and stay there overnight), and a couple of half days off? If he can't manage her all by himself, then it is time to hire help, and hospice can suggest local agencies. Use your MILs funds to pay for it. And just tell her it has to be done. she will argue - but if you get exhausted and ill caring for her now...what will happen next?
Good luck. This is a very hard job and you are doing the best you can.
Yes, she is 'hanging on' because despite all the problems in our society life is beautiful, the world is beautiful.
At the same time, nobody must forfeit their life for one who is heading to the exit; just because she schedules all these dr visits (hey, it's an activity! and my mom would dress to the nines to 'visit' her doctor, like it was a 'date' or something, any excuse to feel life still held some excitement?!) you don't have to take her, especially now with Covid safety issues. Find helpers to give YOU a break, lots of breaks; don't neglect your own life, family, animals, etc., because (a) it's your life, and (b) preserving your quality of life and sanity helps you be present for elder care. All the best.
I am sorry you are struggling with your MIL. Based on other comments and replies, it appears you are living in her home with her, and she is considered to be in in-home hospice.
My dear, it is so hard for most people to admit they are dying. I believe the whole point of religions is to help people deal with their death someday. Some people have a hard time accepting it. Other peope know they are dying and get frustrated because it is taking so long to die (my FIL, who was very grumpy about how long it took him to die).
I know you are worn out. When my mother had a hip replacement, I stayed with her a whole month on 24/7 care. She would not follow the care rules layed out upon her release nor let me do the things I was shown how to do with and for her. I love my mom dearly but during that month she drove me nuts. (Very embarassing for me.)
It is now years later and she is still alive. It is much easier to visit her in her home than live 24/7 with her.
It sounds like since your MIL owns her own home and perhaps has other assets, that is the reason you have been unable to move her to a full hospice facilty.
You cannot force someone to come to terms with end of life. This is their choice. So you need assitance of an outside person to help you care for her so you are not so tired and worn out yourself. My cousin who died of a extremely rare brain tumor had someone like that, paid for by her medical insurance, to help her elderly mother care for her in home. It was not easy because the brain tumor both paralyzed her body and altered her personality so that she was raging angry at the whole world all the time. So they in home carer made if easier for her elderly mother (my aunt).
Please check to see if her medical insurance or she herself can afford such assistance for all or part of the day. It is cheaper the a hospice or elderly care home cost but still not free. It will take the stress off you.
My brother in law, whose father had a non-Alzheimers form of dementia and lived in another state, was able to get one of these carers too for his father. The woman hired cared for the father the last two or three years of his life. The father was happy with the arrangement as was my BIL and my sister and BIL's sister.
It could be a life saver for you because you are obviously extremely stressed yourself which is not good for your health.
(I used to have a lot of relatives. Many have died. Many made it into their 90s and two lived to 100.)
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