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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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
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.
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These are harsh measures, yet caregiving is sometimes the most exhausting work on earth.
Grace + Peace,
Bob
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.
Best Wishes Kevin
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
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.
-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
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