How much visiting is too much?

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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!

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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
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.
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
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.
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
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
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!!!
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.
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
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.

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