Mom is suffering from heart failure and I live four hours away. She is well cared for in a residential care facility. I regularly receive calls from my aunt who lives near mom saying that she is unwell, having difficulty breathing, not talking etc. I Iive alone and am finding it hard to take the decision when to leave my full time work and travel, as these situations happen regularly. I have been suffering from fatigue and have cut my regular visits from once a week to once every three weeks. I have received a call from my aunt this morning, and have explained to her that I won't be travelling today. I fear I sound harsh and uncaring, but there is only so much driving I can take. Does anyone have tips on how to take the decision whether to drop everything and go?
If so communicating with the Hospice Team is the way to determine what is actually going on.
Mom is suffering from heart failure so difficulty breathing is going to happen. Being unwell is par for the course. Not talking is common, talking takes a lot of energy, a lot of breath so not talking is a great way to conserve energy and oxygen.
If mom is not on Hospice take your cues from the Facility staff. They have seen enough decline that if there is cause for concern they will let you know.
Tell Auntie that you are fully aware of mom's situation, that you are in contact with the staff.
Auntie is concerned and it is difficult watching a loved one decline and not "be themselves". Auntie may need reassurance that mom is "holding her own" at this point. (If she is)
I assume that your mom is under a doctor's care and that her heart and lungs are monitored regularly.
If this is not the case, then she needs to be in a different care setting.
If she is in a facility with medically trained professionals, is Aunt reporting these symptoms to the proper folks?
We have a saying in my family--we don't do the "rushing to the bedside" thing. We visit(ed) regularly and knew that every "goodbye I love you" might be the last.
If you are a 4 hour drive away, every 3 or 4 weeks sounds manageable.
I agree with Grandma 1954. My mom had CHF and all of the things you describe mom as feeling are pretty much par for the course, as I'm sure you are well aware.
Does your mom give you grief about not coming to visit? Or is Auntie just a meddling busybody? If it's just your aunt and her perception of what you should or shouldn't be doing, then I would not even take that into account when making your decision about traveling.
My mom's sister was a "long distance" meddler who constantly asked mom about how I was taking care of her, questioning our decisions about medical care - especially hospice!! - but mom usually put her in her place with some well thought out words so I didn't often have to get involved. I did, however, give my Aunt some attitude once; when mom had to go into rehab, and we opted for the rehab center connected to the county nursing home - a fantastic place with great success rates - my Aunt was horrified that it was a county run facility. When she asked me for the name of it, I told her it was called the Marquis de Sade Rehabilitation Center for Old People. That shut her up pretty fast.
Shorter version- I am of the school who thinks that “……surrounded by their Loving Family….” is nonsense.
I am also an Only, and have off and on taken care of many of my family, typically out of love and respect for them, for decades.
I’ve never ONCE done the “…..called to the bedside…” thing when ANY of them died, and that kind of summons would have been VERY UNLIKELY to get me there.
I honored them and did whatever I could, as long as I could.
My mother was one of 5 sisters, and they were all “closer” to one and other than any of them, including my mother, were to me.
They were also notoriously private people, who despised “spectacle”. I would have considered my presence superfluous.
I cannot offer you “tips”, but I do want you to know that your feelings are by no means unique. Maybe someone has written a book about “only child behavior and conduct”, or should.
It sounds to me as though you are basing your decisions on what you have available to you. If you’ve done whatever you feel was your obligation and duty, be at peace with your decision. I am.
and hop every time she gurgles a breath. What will
happen is going to happen whether you’re there or not.
Aunt is way out of line here; if she were truly thoughtful, she would hesitate to alarm you.
We know you love mom. Mom knows you love mom.
“Surrounded by her loving family” is baloney. Half of them would probably prefer not to be there, and the person who is dying is most likely unaware who’s there and who’s not. They’ve got other things to think about, like “who turned off the lights?” and “how do I apply for my halo?” Stay home and relax. It’ll get hectic soon enough.
My demented cousin used to call me all the time with invented issues on behalf of my parents who lived in AL. I'd let her calls go directly to voicemail too because she didn't know her butt from a hole in the ground. But the staff in the folks' AL certainly did! No news from them is good news.
By the way, my mother had CHF and lived for years with it.....passed at 95.
Best of luck not allowing aunties nonsense to nerve you up.
I fear too many people discount the feelings (not the advice) of siblings losing siblings. My mother's sister was six years older than she was and was likely going to die before Mom, but that didn't make it easier. My cousins, all of whom are wonderful people, tried to keep it to only immediate family visiting their mom in her last days. They tried to politely keep my mother away, but she had to tell them she'd known their mother longer than any of them had, and she had a right to see her sister to say goodbye. Fortunately, they immediately acquiesced, and the sisters were together one last time. My rother was never the same after my aunt's death -- the loss was that enormous.
I know this is your mom, but it's also your aunt's sister. I'm just asking that you not be short with her but try to be cognizant of the enormity of her upcoming loss, too.
1) Tell your aunt what is ‘normal’ for a person in your mother’s condition, and what ‘end of life’ looks like. Write it down, and refer to it when you need to. It sounds as though aunt gets too upset about ‘normal’.
2) Tell your aunt that you just can’t come so frequently, and you need to save up the ‘rush at the drop of a hat’ thing for when it’s really necessary. Otherwise you might end up not being able to come when it really matters, because it’s all become too much.
3) Tell the staff what’s happening with aunt. It may be possible for them to talk to her, and let her know when things are OK and when they are not too good. If they are willing, ask your aunt to consult with staff before ringing you.
4) Your aunt may be phoning you with unnecessary ‘emergencies’ because there is no other way for her to be really involved. Ask her to phone more regularly with some good news, and suggest some nice things she could do with mother, then tell you about. It would be much quicker and easier to have a 10 minute phone call once or twice a week, even if you don’t really want it, than a four hour trip each way. She may be worrying, wondering how bad things are, feeling lonely, and missing being ‘in the picture’. And tell her how much you appreciate her visits to your mother – just for company for mother, and an update for you, that's what you really need.
See if you can change the pattern, so that it's easier to judge what you should do.
I hope there’s at least one good idea in that list! Yours, Margaret
Perhaps your aunt needs professional help. You may also benefit yourself with your own counseling to best deal with your aunt and to save yourself unnecessary travel with your strained schedules. You do not to die ahead of your beloved Mom.
Keep consulting with your mother's nursing home staff because it is so expensive to live there, and your aunt needs to be told that as well.
If your aunt bothers you TOO MUCH, I would say block her calls but don't want to indicate discourtesy.
1. Make a plan to visit your mom regularly around your schedule.
2. Ask her caregiver in the facility to communicate with you if something is changing in your mom’s health and you are needed. Explain where you live and you want to be in the loop and will come if necessary.
3. I’m wondering if your aunt needs your support too. Explain your plan but have her call you for updates or chats.
My mom had heart failure/Afib living at home with my dad. They had in home support for a few hours every day and Hospice. The Hospice nurse was key in helping us help our mom. Both my sister and I live far enough away that we relied on the nurse if we were needed asap.
Just keep things on good terms when you say goodbye each time. You can say that you will see her again, if you are religious, may not mean in this life. At least in parting you will feel that you had a good visit. You already know she is cared for
Your answer is in your question:
She is well cared for
I Iive alone and am finding it hard to take the decision when to leave my full time work and travel, as these situations happen regularly.
I have been suffering from fatigue
You fear you sound harsh to your aunt.
Ok, here it comes-(I assume you are MPOA and FPOA for your mom, if my assumption is incorrect, please correct me.)
You are your mother's most important asset. All of her care pivots around you. You need to take care of yourself. There is no virtue in killing yourself to keep her alive. (If you are Christian, you already know about someone who did that for us many years ago.) Your fear of sounding harsh is understandable. If your aunt takes things the wrong way it is her problem.
Making the decision to drop everything and go is unique to each individual. I know you want to be there for you mom at every step. The fact is you cannot and, because of the distance, you may miss the next big event. You need to forgive yourself. The fact that you ask this question tells me that you have a good heart and you are doing the right things. Trust your decisions. Remember-mom's care is being delivered by professionals. Your role is to manage it, not micro manage it.
I had an Aunt I am sure would have done the same thing, only she did not help others. It was all about her. You probably should tell her that you know she means well but she is stressing you out. That you work f/t and find that the traveling is wearing you out. You need to rejuvenate so u have cut down on visits for now. That you are in contact with the facility and they will contact you of any change in Mom. And because of that, there is no need to call you.
When my Mom passed, my nephew and I had just been there to visit. She had been in bed with her eyes closed for almost 2 weeks.
We left at 1:30 pm, Mom was pronounced at 1:50pm. The Nurse told me it happens this way all the time. They seem to wait until family leave.