How much visiting is too much?
My mom came to visit me out of state and was admitted to hospice care right away. She is a 5 year lung cancer survivor and it has likely spread to her liver and spleen. Before her visit to my home (planned to give my dad a break as he wasn't caring for her well) the oncologist wrote her a hospice presription. She has de coined quickly in the last 40 days. My husband and I are now feeding her, dressing her, toile ting her, changing the Depends, and brushing her dentures as she cannot do anything on her own. She eats and drinks a bit but if we don't help she gets very little food or drink.
Relatives are coming in from out of town and are wanting to see her and it's getting clear that it is very hard on her. One visiter is actually my sister who is king of toxic and very over bearing. I'm afraid she will bring up topics that are upsetting to my mom Bc she does this over the phone. Like she questions my mom about morphine that I give for pain. My mom has dementia and doesn't remeber it so my sister gets upset at me and says mom didn't need the morphine. The other visitor that is coming is my uncle who is not even arranging his plans with, he has done it through my aunt. I sense he isn't talking with me because we have recently vehemently disagreed on politics recently over facebook. However, I'm fine with his own views but I feel he isn't speakjng to me. We were at a family party last year and he all but ignored me until I approached him. The thing is that its rude to not be speaking me and I feel he is unwelcome if he can't even coordinate plans directly with me to see my mom. Also, this is very rough for us. My father and three siblings are not supporting me in any of he care financially or by being here. Two of my siblings aren't working and they have washed their hands of this. My father isn't helpung as he has his own issues and I am helping him from another state paying bills etc. my siblings will not even travel with him to see my mom here during her last days. I am at my wits end and having trouble making sense of people's irrational behavior like my uncle not speaking to me soninjustvwanted don't want to even deal with it and I am ticked off about it. Am I being overly reactive? Does it really matter if he won't speak to me? What obligation do I have to them and what is a good way to limit their visits? Please help!
I guess my thought is, is there a hospice facility nearby that would admit your mom. Her resources would be used to pay for the room and board part. Or a nearby nursing home with hospice as an add on. They would monitor your mom, you could visit as a loving daughter and the DON would have no issue limiting visitors who upset your dear mom. think about it.
Best Wishes Kevin
It's so sad that relatives can make even death harder. Could you ask the hospice chaplain to speak with the people who upset your mom? This seems to be the biggest problem from my perspective and often a person outside of the family dynamic can make some headway when it comes to family problems.
As far a your uncle goes, I'd just ignore the fact that he isn't speaking to you - just act like things are normal. If his visits are okay for your mom, then allow it but don't expect warm feelings between the two of you - then you won't feel so emotionally involved.
We'd love an update from you when you feel up to it. Meanwhile, bless you for being so caring. Get as much help from the hospice social worker and chaplain as you can to help with these issues.
Carol
These are harsh measures, yet caregiving is sometimes the most exhausting work on earth.
Grace + Peace,
Bob
As for your Uncle...again, maybe the chaplain or hospice worker can set him straight on visiting. Rise above his attitude and tune out your anger towards him. He has no right to sap your energy.
Also, if you do not want them to visit lock the doors , put a note on them to suggest visiting hours , look at caller ID and don't answer the phone.
It's called tough love. Keep us posted.
Remember that after your mother passes on, you will be exhausted and need to recover physically mentally and spiritually. Listen to everyone here about having someone intervene on your behalf.
I agree with your need for support and space, and I also have a few ideas on how you might find that. For one thing, recognize that phone conversations are not at all similar to face to face information, and also that there are different ideas of how to care for a dying person - I was the one on a case who felt that Hospice knew only about recommending morphine and meds and I felt there were other at home supports which could have made a difference, if everyone were not trying to be doctor-wannabes and followers, guessing about what's happening inside a body, for discomfort can come from so many different sources - I had family assuming it was a cancer where I felt it was from an unaddressed UTI, but nobody thought of doing other remedies. Or, can't sleep at night - set up a comfortable chair in the room and rest nearby, not always intervening, but always on hand, until the sleep patterns improve.
However - there are different stages, and there is not one proper treatment - situations evolve, and the people who are providing the care, must honor what works for them, and all other conversations must be kept at a distance - for one thing I'm sure of, is that it is not helpful for a dying person to hear caregivers arguing without resolution, over care methods. Family arguments too often end up combining personal judgments and comments and reactions, even while trying to talk about care that different people feel are needed.
So I wonder if you can manage some of the logistics, rather than just let family members take over your home and space, as they arrive. You might tell them you are doing your best, even when it's difficult.
Say you know people may have different ideas, and you might plan a breakfast or lunch out, in any nearby location where you could linger and talk, for family conversations. You might keep a list or suggestion box there, and take any idea under consideration, thank the person for it, and don't try to discuss it right away - plan for a few days to think about it, and reserve the right to decide.
Consider the awake/asleep time your mom can handle, and that you can handle. And inform your uncle - even write up an invitation with notes and a schedule - that during such and such hours, he is welcome, and that you know how much it means for him to come.
But look closely at your day to day schedule - how much down time before you get to sleep, maybe have the home ready to receive family or visitors for 2-3 hours in an afternoon, and maybe between 6-8:30 pm.
That way, family is put on notice, that they are entering a care site which is already being managed, and you explain that you are doing your best to manage your lives and manage care - you are glad to see them all, understand it's important, and also hope they understand and will support your efforts, not just their mom - by planning any visits during those times.
Just a thought. By making out an information sheet with visiting times, you would be asserting your role, without needing to do so, defensively.
Very best wishes - then you can ask any special help, as you feel comfortable.
If there is some other room in the house, out of hearing distance, that you might set up, for family and visitors to take breaks, go and sit and have a snack, or a beer or whatever, to sit and chat as family. That way, visits to the frail person are kept separate from family conversations about care or other issues.
I saw that in a home, and all felt welcome, and respected the process, and it was also very helpful to have a spot to remove to, for further conversations that arise when family don't see each other often.
People may feel they're being helpful in visiting, but the visits can be taxing and they have no concept how trying visits can be, especially if there are children involved.
If your mother is in hospice at home, I would ask if one of the hospice staff can be there at a certain time, and advise the relatives that would be the time to visit, but their visits must be (a) limited to a certain length, such as 15 - 30 minutes, and (b) not raise any issues about dying, morphine or other med administration and (c) avoid all contentiousness.
Be prepared to ask them to leave if they can't accept those terms. Your mother is facing perhaps the hardest battle of her life and shouldn't be burdened with misbehaving relatives.
I don't even think it's beyond protocol to post "regulations" on the front door and advise they must be adhered to. That would include all the contentiousness you raised in your post. This isn't the time for relatives to be hurling accusations and griping about things that have no importance to your mother.
If she's in hospice in a facility, share information on the relatives' intended visits and ask if the staff can help monitor and ask them to leave if necessary. The chaplain would be another good source to intervene. Perhaps even a briefing by the chaplain or one of the staff before they visit would help them remember to exhibit good, compassionate behavior.
I am sorry for you and your mother's pain and medical situation, and hope that you don't feel guilty for protecting her against unknowing and perhaps uncooperative relatives.
If they disagree - see if they want to take Mom into their home permanently (I'm sure they don't). They come in for a short time - stir things up - leave. Then you are left dealing with an upset Mom for days or more.
Your house - your rules. Since you are the 100% caregiver - they don't get a say. They are just visitors. If visitors can't behave - out they go.
Bless you for stepping up and taking care of Mom
Accommodating visitors should not be a priority. People should respect that.
Maybe they all could have visited during her life; or if they were part of the family caregiving team; or if she were in a facility that allowed visits, supervised. Even hospitals disallow visitors ICU, immunity compromised, etc. Take a lesson from the ICU, this situation is not that different. I would say, she is not able to have visitors at this time. Send cards.
Sorry you are going through this difficult time, wearing you out. I heard what you said, and I will check back later. The advice on here is usually first take care of yourself. This week, any visiting is too much, imo.
I've had some issues before with my family and I just told them the truth, point blank. That normally works with them.
Maybe, they will accept requests from a Hospice worker of Clergyman, but are they going to be there around the clock? I might have plan A and then plan B.
I'd do whatever seems necessary to protect my mother and certainly not worry about anyone's feelings except your mother's and your family's.
Doing what you are doing is extremely stressful. You don't need the extra work from rude and insensitive people on top of what you already have. Family is great, but protecting my gravely ill mother from discomfort and aggravation would be my priority and not the feelings of insensitive family members.
The bustle in a house
The morning after death
Is solemnest of industries
enacted upon earth.
The sweeping up of heart
And putting love away
That shall not need to be used again
until eternity.
My opinion is that when any human is very close to death it is
a disservice to their dignity to seek to "cure" them when obviously there is no hope of any one doing so. (I say this from my own experience with loved ones. )
Grace + Peace,
Bobp
Hoping that these visitors are not staying with you, Wisteach.
-someone to sit with her while you rest
-someone to give you a back rub and hold your hand
-someone who can prepare a meal for you, make sure you eat, and then stay to clean up
-someone who can offer you love, friendship and understanding
Good luck, and you're doing a great job!
Gabby