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.
It's guilt; this doesn't take a licensed therapist to figure that out. Be by your father and medicate accordingly. As for the hysteria with the family: the more you try to address them, the more they will persist. Have the hospice social worker deal with them and if they can't act civil, bar them from the house.
This is a time of reverence to your father whether he's conscious or not...respect above all for the dignity of his death to honor his time here.
Ask her, if a person is dying, meaning their organs are starting to shut down why would they want to take a sack lunch with them?
As you can tell, I'm allergic to stupidity and I break out in a rash.
Anyone person who has sat with a family member whilst said family member is beginning their passage to the other side would know what is happening
Does Dad talk with loved ones who have already passed over? Well if he does, those loved ones are there to welcome him as well as his passage.
Thank you for your advice. I’ve received a lot of support and wisdom on this forum. And you’re right...when this is over, I’ll take comfort in knowing I did all I could.
I wish you well in caring for your partner. These are not easy days for any of us so I appreciate it even more that you took the time to reach out.
In one of your responses you wrote you haven't had time to grieve both your mother's death and your aunt. And now your dealing with your dad. Again I worry that you're going to explode. I cannot imagine how you are dealing with all of this day after day. You truly are someone special.
One question I have is, did you have to take care of your mother and/or aunt without help from your sisters? I fear for your answer.
You don't have a rough road ahead, you're already on it. Somehow, you're continuing to be there for your dad. So much love you must have for him.
Earlier my advice to you was to forgive your sisters because their your family. If you still have love for them, then don't ignore it. My situation with my daughter not being there for her mother, especially when my wife was in her last days, hit me hard. And yet, I still love my daughter and I hope some day she'll return to me. To any of those that disagree I say this, when your love is so great for someone, it surpasses everything else, and it makes it so much easier to forgive.
Once again Canoe63, I have a feel for what you're going through. Days of worry and exhaustion with no relief in sight takes it toll. At the end of the day, ( really there is no end ), you know what's ahead and it's very difficult to go through another day, but somehow you do it, over and over again. Even after I send you this message and turn off my computer, I will still think of you as I have been these past several days. In spite of it's difficulties, please try and take care of yourself, it's a must. Maybe a miracle will happen.
A miracle HAS happened. I’ve found the support, compassion and empathy that I desperately needed. I have you and everyone else here to thank. It has lifted me up and given me hope where I previously thought there was none.
You asked about my sisters’ participation when I cared for my mom and aunt. Not only did they not help, they undermined the process. For example, at one point my mother was hospitalized for a low serum level of sodium. She was doing well and getting ready to discharge when she fell and broke her leg. Didn’t make sense because at that point her sodium levels had returned to normal and she only required stand-by assist. Come to find out, both sisters were sneaking in tranquilizers and sleeping pills to her in the hospital. I won’t bore everyone with the details but they didn’t learn their lesson and continued to do it when my mom was transferred to a rehab facility. It was a big deal and required a lot of intervention as you can imagine. My mother never forgave me for doing what had to be done. Sadly, she never got to return home. The broken leg started a domino effect of medical problems and we bounced between hospitals and NH/rehab. Stroke, heart attack, infection on top of infection, it was beyond awful. As for my aunt, my sisters just didn’t care except to use it as an opportunity to criticize.
I want you to know that I’m okay. At this point, I’ve turned it over to God. I was once reminded that a clear conscience is a soft pillow. And it is. When it’s time to move on with my life, I will do it knowing I did the best I could and under very trying circumstances.
I actually referenced you (indirectly) the other day when someone said they were ending their relationship with a family member. I told them that I learned from a very wise person to keep an open mind and open heart to the notion of future reconciliation. Love should not be so easily disposed. I know I will approach it with a lot of boundaries, but I will not close the door. We grow. We learn.
Thank you for standing beside me in spirit. I continue to pray for you and your daughter.
My mom also quit eating and drinking about 3 weeks before she passed. I offered he food or water, but didn't insist.
As I told my younger sister, if she thought she could do a better job, she could take over full time care. That ended that conversation.
So, my advice is to tell your sister to take over your dad's care. I think you'll find she will reconsider her actions.
Big hugs to you. I know you have been doing your best and I know how hard it is. You are a super star!
Thank you for the encouragement and advice. I am very sorry you had to go through that but appreciate you reaching out to make my journey a little easier. Big hug received and returned!
Tho your sisters are in denial, their actions will carry over afterwards too. I now get to deal with the I want, give me stage. Stand firm, you will still need to be strong against the next onslaught of selfishness. Hopefully you and your sisters can reconcile when all is said and done. Prayers for you and your family as you make this final journey with your father, it's not easy.
I am so very sorry for your recent loss and am humbled by your message. It’s good advice because the true ugliness often shows after someone has passed. My prayers for you and your family.
Go slowly if you're considering removing your sisters from your life. Even though they have treated you so poorly and haven't helped out taking care of their father, their still your family. Think about what life would be without them.
My situation involved my daughter not once visiting her mother knowing my wife was seriously ill. My wife passed and my daughter still refuses to communicate with me. At first I felt much anger, but in spite of what she has or hasn't done, I still love her. She's my daughter, I can't remove her from thoughts. Not forgiving her would probably lead to never ever seeing her again. I chose to hope someday she will come back to me.
Once again, take your time regarding the "get rid of your sisters" advice. It's not bad advice, I'm sure many others would recommend doing the same, BUT, do you really want to lose them forever? If you still love them, then your decision should be easy. I hope you take the same path I took.
God bless. I hope you find much strength to help you get through this awful time.
I sincerely pray for you and your daughter, for your reconciliation.
I assume both sisters were on board with the decision to call in Hospice or at least aquested to it if it was your dads and they know what that means, he is dying and resolved to it, Hospice is there to make it as peaceful and comfortable as possible so your sisters focus on getting him to eat is really just grasping at straws, I get the urge to hang on to a passing loved one and I have learned that it’s not until you have lived with a person dying and been their day to day caregiver that you really learn the skill of letting them go of understanding their right to die in the way they choose if at all possible, your sister doesn’t have the benefit of your experience. She also doesn’t have the benefit of your time with Dad any more than the work of taking care of him 24/7, it’s a double edged sword like most things in life, ying yang as they say.
If you can find the patience at this point maybe you can say something like “there are things he will only let me do because I care for him all the time and there are things he just won’t do for me because he is so used to me. Maybe he would be more receptive to your approach or just you bringing him a special treat, you are always welcome to try”.
“I’m not going to make it a huge deal or a stress between us though, I will offer whatever he wants but if he chooses not to eat I have to trust his instinct just as I have to trust his decision to pass the way he is. It’s tough to watch but i also know that often the body tells you what it needs and what it doesn’t we just don’t always listen and when someone’s body is shutting down or fighting pain digestion can cause more pain and discomfort so since we know he is passing anyway I don’t see much point in ignoring his instincts/wishes now.”
Only if you feel the need to address it at all of course or maybe if she pushes it again. The time isn’t far off when you and your sisters are going to need each other even more than you do now (or would be nice to have) and while I’m not in your position I think for me it wouldn’t be worth the negative energy and bad feelings later to make a big deal of all of this even just internally. My thought s are with you.
He died that night. Your father is in the process of dying. There is nothing anyone can do to stop it. He may not even be aware of anyone at this time.
I know this is hard. My prayers go out to you...
We also held this final meeting with the nursing home, and the Hospice nurse, so they could educate my siblings. After the meeting, neither one would listen. My brother a truck driver got in his truck and left for a job across the country. He did not get to say goodbye. I know he regrets it everyday. Do your best and leave the rest to God...
It is very important to give him good mouth care daily with mouth sponges or damp paper towels. The pharmacy also carries mouth swabs with a lemon flavor. I hope and pray the family can grow closer.
My DH reached a point where he couldn't eat one bite as he was just not hungry. This is normal and it is the body shutting down and preparing for the end. Since your father is under Home Hospice, I am sure if they wanted your father to be fed, they would tell you your options.
I know it's difficult, but try to ignore your sisters and their ignorance. You are doing a fantastic job in not forcing your father to eat. It only delays the inevitable and can even cause more pain and discomfort because whatever goes into the body must also come out of the body. By allowing my DH to stop eating, he also stopped needing to void which was a blessing for him.
Hang in there Angel, you're doing great!
If this is just another bump in the road of a long washboard road of problems in the family - then given them warning in advance when you talk -- I don't want either of you to tell me what I am doing/not doing right. This is hard enough for me to listen to drs and then have you both tell me what I've done wrong. The update on dad is blah, blah, blah. I'm doing the best I can here. Goodbye.
Clearly if he's in hospice, it's time for them to come if they plan to see him again in this life. Tell them it's time and tell them while they are visiting, they can see first hand what is going on and ask the doctors all of their questions since he already has answered all of yours.
If they decline on a visit and mention ANYTHING at all about you withholding food or not feeding him appropriately, then just say...I'm very puzzled by that comment... to believe someone is causing harm to our father and you not making a visit or doing anything to rectify the problem almost seems like neglect on your part.
Data wise, get some medical information from your doctor or a professional source that normalizes that appetite decreases in these instances.
Secondly, realize your sister’s anticipatory grief or more accurately her resistance to feel it is displaced on you. Learn to practice detachment, observing your sister’s behavior, dealing it for what it is, and not trying to change her as it’s impossible anyway. Try to shift the conversation to how difficult it is for her (and you?) to watch his decline in eating and awareness.
if these don’t help then see if you can try to set up a schedule so that you both aren’t with him at the same time.
it is normal to regress in behavior and emotional age when anyone is in grief like they are.
hope this helps.
Mark B. LCSW
Former Hospice Social Worker
My husband has heart failure, end-stage arthritis, angiodysplasia; dementia, etc. He is not at end stage yet, but he does go through periods where he is not hungry and doesn't drink enough...that just started this year. It is heartbreaking to watch him deteriorate. I know watching your father isn't easy and then being blamed for his slow deterioration has to be very painful. Only primary caregivers can know how emotionally draining and painful it is to watch as death approaches.
A friend that cared for her spouse with heart disease for 15 plus years reassured me that we do the best we can, but in the end, God determines when it is time for our loved ones to go. Remembering that during times that I feel so discouraged and alone does give me comfort.
God bless you and give you peace.
Jeanette