Follow
Share

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!

This question has been closed for answers. Ask a New Question.
Find Care & Housing
This must be an unbearable burden for you...watching your mother die and having harpies visit while it's happening.

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.
Helpful Answer (13)
Report

Keep on Keeping on You are doing the correct thing eventually you will learn to disregard other people Do what You Know is right build up your courage and Ignore the outside comments You know what is right keep away from other negative feed backs
Best Wishes Kevin
Helpful Answer (5)
Report

wisteach, this has to be horrible for you. I'm so sorry that you have to handle the death of your mom basically alone, both emotionally and financially. Thank God for hospice.

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
Helpful Answer (0)
Report

I empathize with you. In heaven you will receive a crown, but we aren't there yet. What to do now? Well, though extremely difficult, I suggest to consider telling them they may only visit for 15 minutes every four hours and must not talk with her about her treatment and symptoms, but just do things like bring old family photos, stories of "way back when," and so on. You may choose to bar your annoying sister from even coming at all.

These are harsh measures, yet caregiving is sometimes the most exhausting work on earth.

Grace + Peace,

Bob
Helpful Answer (12)
Report

Your Mom is very fortunate to have you during this time. I agree with above....ask hospice to assist you in every way they can. My hospice agency had a few written suggestions on how to deal with family, what to expect from the dying person etc. If your agency can supply some tips like that I would make copies and put them someplace for the visitors to read first. It can be exhausting just having to explain things to everyone who comes over. Play some soft music that you can relax to as well as Mom.
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.
Helpful Answer (4)
Report

Wisteach --

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.
Helpful Answer (3)
Report

Hi Wisteach,

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.
Helpful Answer (2)
Report

A Quick Ad - when a patient is frail and is on Hospice, I have found that it is often clear from their environment in the home - without bright lights, and all comforts nearby - that quiet whispering is the best form of conversation.

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.
Helpful Answer (1)
Report

Someone battling cancer and/or in hospice needs to be protected from either unwittingly unknowledgeable or deliberately inconsiderate people, as well as those who do not realize that being visited is exhausting.

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.
Helpful Answer (7)
Report

I like GA's idea about writing up some regulations about visits, as long as they are reasonable. And don't wait til they arrive to give it to them, send an email or post it on facebook.
Helpful Answer (2)
Report

like some say.......I would just indicate that hospice (maybe a white lie) said she should only have visitors every 4 hours but only for 10 or 15 minutes. Tell them you have a schedule and you can put them in for a specific time. I would also let them know that if she gets extra tired or upset due to a visit, all other visits would be cancelled for the day and the person that has upset her will have their visitation rights relinquished. IF they were in a hospital, they would probably be limited to 5 minutes and any disruption of the patient would require the visitor to be removed from the patients room. If they don't like it......oh well.... and don't worry about the person not speaking to you.......its their loss and you are probably better off "right now" without the added drama. wishing you luck and hugs.
Helpful Answer (3)
Report

Agree with Castle. Write up a set of visiting times. Tell them it is necessary to work with hospice team care .
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
Helpful Answer (5)
Report

This is just my opinion. I think this is all happening in your home, and you are doing the work, getting burnt out. Anytime the primary caregiver and their family are overwhelmed, they should be able to say "I can't possibly do that now".
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.
Helpful Answer (3)
Report

Another thought...If Mom is in your home and you have visitors who want to visit with Mom...make sure they know what they can do etc....and then YOU go lay down for the 30 minutes and relax!!!
Helpful Answer (5)
Report

Since you are caring for your mother in your home, YOU make the rules. Limit visits to about 15 - 30 mins. and tell them they do have to leave. A person with dementia has little to say, won't remember the visit, and may not even know who they are. Be her advocate!
Helpful Answer (2)
Report

Unless you are willing to burn bridges be careful how you go about this. Limits are reasonable and necessary, but don't put yourself in a position where they see you as blocking their access to her or there will be war.
Helpful Answer (4)
Report

When my father was dying, I just said to the doctor, "I want you to tell me that dad's visitors can only stay for 15 minutes". So, she said, "Your dad's visitors can only stay 15 minutes." That way I, with a clear conscience, could limit the visiting by saying it was doctor's orders. As far as the meds go, have the doctor tell you they can't talk about it. Then it is the Doctor saying it not you.
Helpful Answer (4)
Report

I assume this is a situation where you have made a promise that she will pass away at your home? That is a very big committment to her. Your needs matter too, to make this possible. I think even people who seem selfish or inconsiderate will respond when you tell them this is hard and you need some limits on making it harder even though you want them included in the end of her life. I would say "own it"...its not just that its hard on her, these things are hard on you in an already hard situation. Give and take is needed from them towards you. If you express these concerns to someone else, maybe you can then express the concerns to your family members and work something better out.
Helpful Answer (3)
Report

I think the responses you have received are interesting. One would hope they would work, but based on the way you describe your family members, I can't imagine that rules, polite requests or reasonable limitations are going to mean much to them.

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.
Helpful Answer (5)
Report

This is a hard one. My prayers are with you because the whole hospice process is tough. I choose to put my mom in a hospice facility (because we really don't know how long they will live) and I didn't want relatives in and out of my house. She actually only lived a week in hospice (over-abundance of morphine). If I had it to do over, I would probably do the same thing. The reminder of her death in my house would be too great too bear. I'm with the others, post visiting hours and don't hesitate to ask them to leave. I had to do this with my mom and a family that brought disruptive children.
Helpful Answer (1)
Report

The Bustle in a House by Emily Dickenson
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
Helpful Answer (4)
Report

I hope that maximum family visits is optimum.
Helpful Answer (0)
Report

Will your hospice social worker work with you to manage your family on your mother's behalf?
Helpful Answer (0)
Report

It's funny, people want to come to see someone who is ill or dying when they usually don't see them any other time. I wouldn't be too worried about telling people that IF they come, it can only be for a very brief time. Friends want to see my mom who is in alz/dem facility and that is not going to happen. It will not do HER any good (but might make them feel better since they haven't seen her in a while). She doesn't remember them so why have that activity upset her just for THEM to feel better. Yes, you will make some of them mad but some will completely understand if you explain exactly what is going on. The one's that get mad, they probably shouldn't see her anyway. They just want to go back and have something to talk about with their friends or other long lost family members. Who cares..... Good Luck and God Bless. Stand you ground....
Helpful Answer (2)
Report

This sounds right on the spot to me.
Helpful Answer (0)
Report

Here is how a family visit recently went: 5 people went to visit their elderly uncle and aunt. Two were children. The 85 y.o. Uncle, over-doing things, fell, hit his head, later went to urgent care. The aunt, who cooked a great meal, also had to increase caregiving time for her husband at a time when she was already overwhelmed and stressed. This only touches the surface of what went on.

Hoping that these visitors are not staying with you, Wisteach.
Helpful Answer (0)
Report

I hope you DO get some visitors while you sit vigil with your mom,

-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
Helpful Answer (5)
Report

agree with your words
Helpful Answer (1)
Report

Post visiting hours on your front door? Lol
Helpful Answer (0)
Report

Hi Wisteach, this sounds really hard and draining for you. Limiting visits is a good and reasonable idea. My friend Graham has recently been put into aged care and has started using a simple videophone. Who would think an elderly person could use a videophone! Its literally a one touch to call, this enables him to see his family face-to-face, even though they live interstate and just the smile on his face is enough to make me recommend this product to you. This could help reduce those pushing visits - yet still allow for them to check in with your mum face to face.

Good luck, and you're doing a great job!
Gabby
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter