My dad is under hospice care in his home and I am his 24/7 caregiver. He has end stage heart failure, uncontrolled Afib, and severe arthritis. He had recently taken a turn for the worse and we readily see the marks of impending death. Amongst them is that he is no longer interested in food and rarely wants anything to drink. My sisters, however, are pointing fingers at me. One stated today that it’s because I’m not encouraging him to eat in the right way. I normally try to address their idiocy with patience and an explanation. And I did that today but she doubled down on her opinion and I’m aggravated now. I try to be the bigger person but I am exhausted and I’m so tired of them acting like they have a clue and treating me as though I’m inferior. I understand that no one here can fix my family dynamics but I would appreciate some advice on dealing with them.
Turning down food & drink towards the end of life is normal.
Sister speaking from a position of fear and ignorance does not make her statement(s) true.
Best wishes and blessings as you help your father navigate this passage
job in the process whether it be running errands or doing housework or shopping anything to make them feel that they are needed. The hospice care people can explain to the family how end stage works and maybe that will help. You are not starving the patient. Forcing them to eat and drink doesn't work. They need to understand what hospice is about. Don't let them bully you. You are doing the right thing and I wish you luck.
Tell them to call or visit their local hospice center to find out what takes place when a person stops eating. I'm sure they will get the same answer I gave you. Maybe then they will unfairly stop blaming you and start helping you take care of your dad. Remember, you're family, don't let this tear you apart. Never stop loving one another. It would be so comforting for your dad if he could see you all together in his home before he's gone. Regardless of his poor health, seeing you together will give him happiness and peace.
After your dad passes, you will look back knowing you were there for him, and he will look down smiling at his one daughter that loved him so much.
I agree it would be nice for the father to see all of them together; after his death and funeral/memorial activities they could all head for different continents if they wish!
I never regretting putting mom on a feeding tube. She was very happy and comfortable for a long time -- yes it took a lot of work but she was comfortable and that's all that mattered. Dying of dehydration can take 2 or 3 weeks. To me that was NOT an option. But the PEG feeding tube was a last resort when it was impossible to give her her hydration and food needs (it took 1-1/2 hours to feed her a single meal prior to PEG tube).
I bought several TUBE TOPS from Amazon to conceal the tube. Mom never bothered it. But I had to conceal it because if you don't it can get caught in the sheets while turning her and it can get pulled out by accident. I tend to think most nursing home patients get their peg tube "pulled out" and the patient is blamed when the CNA turned and cleaned the patient without concealing the tube, getting caught in the sheets and gets dislodged that way. Those tube tops were really easy to change out and I simply washed them.
BE MINDFUL complications can happen with PEG tubes..but the alternative is slow dehydration. So in my mind it was worth the risks. Which happen to be minimal with good nursing care. Mom never had an infection because I changed the dressings daily and it was kept CLEAN. With proper flushing the tube never got clogged. The surgery itself only took about 10 minutes.
Good luck,
Stuck in the same hard place.
Sorry for massive run-ons/spelling but as you know time is tight. I'm choosing to distance myself from family because it's gotten to self preservation point for me. I'm not anyone's punching bag, I have enough weight on my shoulders I don't have to carry them too. My middle sister kept shoving frozen boost in my Mom's mouth no matter what anyone told her. Mom aspirated often. Now Pop. The middle one says he doesn't eat because I don't cook 3- 4 course meals like Mom did and why not I don't have anything better to do. They don't stop with education and yeah I get it's a reflection of their feelings but still I have enough sadness and the what ifs as it is...DNR and DNI papers are hard to file and have the doc's repeat it to make sure the added crap from "loved" ones isn't so loving and caregivers are on MAX load as is, give yourself a break and know what's right, nobody's words except your Dad's.
My mom thrived with her PEG tube..yes they could pull it out but my mom never touched it. I used that as a last resort only. (She eventually died of liver failure but I already knew she had liver cancer, but she died comfortably). When ready for discharge you can put him back on hospice and they will provide you all the tube feedings and dietitians will instruct you how to feed him.
Just an option. Have a family meeting, and if he is still "with it" ask him what he wants. Also be mindful if you opt to let him die without a PEG tube it can take 2 weeks or longer to die of dehydration, and the morphine hospice gives does not always kill the pain..but can even make him hallucinate. Very frightening hallucinations at that. My father died of advanced cancer and he said he would hallucinate with morphine very frightening things and he still felt pain.
You and your family are in my prayers, hold him, tell him you love him. One more thing I did for MIL when I saw the sparkle leaving her eyes a few days before she passed was I had her grandchildren and great grandchildren call her, tell her good night and that they loved her. Put the phone on speaker and let them talk. It was for her and them I took the time to do this.
Best of luck
I would not waste much time trying to explain it to her. If she isn't there to help, then she should back off. She won't but she should. Just try to forgive the ignorance and arrogance and continue to be there for your dad.
Sorry that you are having to deal with difficulty on top of difficulty here. Take care of yourself.
Peace.
Respect the person he is with his wishes.
Just wanted to say that I am thinking about you and praying that you are finding strength at this time.
Great big warm hug!
Your dad obviously pick the best one to be in charge of him & his affairs when he picked you over your sisters - sometimes people die & want to die - there is an old saying 'he turned his face to the wall' which means someone is ready to die & there is nothing anyone can do about it -
Quality of life is important to that person & sometimes they don't want to go on anymore - refusal of eating & liquids is a normal part of the dying process so badgering them can distress them - what is eating/drinking going to accomplish? .... an extra few hours in pain maybe -
Hold his hand, sing to him, tell him you love him, tell him you'll miss him, tell him a joke so you can see a last big smile/laugh will all be better that nattering at him to eat/drink - that will be a much better last memory of him than him turning his face away from you to avoid food .... my last memory of my dad was him saying he loved me not his usual 'me too' when I said I loved him ... priceless
Your sisters are also losing their dad. They may feel more guilt because they haven’t been there as much as they should have been (or as much as they think they should have been). Hospice staff can explain things that you as a sibling probably shouldn’t—mainly because siblings don’t always think their sibling knows much (even when she/he does).
Invite your sisters to come and take turns trying to feed your father. They will find they won't have too much success. At some point, your father may forget how to swallow. That's another sign that their body is shutting down.
Play up lifting music, classical or favorite songs from the past. Music can temporarily open both portion of the brain to communicate with one another. If the dementia is too bad, it won't work at all. But for the few minutes to whatever time it does connect, it's priceless to have them be themself for that brief moment of time..
Some health care facilities will do day stay, this allows you to drop them off for a few hours to get a break. Our's was $125 per day. I just needed help once a month. They are also qualified to do Respite Care where you can drop them off for 5 days and get a break from caring for them for 5 days. I used this so we could visit the in-laws and attend my father-in-law's funeral. It's an included service of Medicare for home caregivers. Or ask your sisters to take him for the weekend. My mom became bedridden after a time and we used wheelchairs and changed diapers. If you can do it, so can they. And they will regret not spending time with him while he was still alive.
They will remember what they choose to. They can give the care that is needed, but still have the memories of a healthy parents years ago. This is truly the Circle of Life.
If sis thinks your so inferior, let her step up to the bat and watch her fall on her face. Hang in there.... we're behind you, and sometimes family sucks!
You can look up this info online (dying process) and print it out for your sisters to shut them up once and for all. If she is picking on you it sounds like she in denial, and having problems processing his impending death. She is lashing out at you for him dying. It is not your fault and there is nothing you or hospice can do about it. That is rediculious. I would have hospice talk to her about it when she comes in. Hospice is also monitoring him and has no problem with your care.
I also wouldnt allow her to treat you like it is your fault. I think your sisters would blame you for something/anything no matter what. They dont get to lash out at you for your dad dying. It is stressful enough. I think they are not dealing with it and need therapy. Id tell them that to their face. You shouldn't allow them to treat you that way.
If he is living with you, I wouldnt allow them to visit until they stop lashing out. You dont have to take that abuse on top of everything else. I'd get hospice to talk to them and then tell them you dont want to hear another word about it. Or they can leave. Or if he is staying somewhere. Dont be there when they show up. Leave. You also dont have to answer a single question or respond when they start. You are not the family whipping post because they want to vent. I feel so bad for you having to put up with that. I think it will get worse after he dies, so better prepare yourself. You need to think of ways to shut them down. Stand up for yourself. Good luck.