The nurse at the assisted living facility had phoned my mom today. We placed him in the home in December and has been living with Parkinsonism/Alzheimer/LBD for about 6 years. (Diagnosed in January of 2015).
The last few months he has deteriorated rapidly. It's so sad. This disease has just taken from my dad for years now. Since he entered the home the decline has been so fast.
My parents live in a different state than my siblings and I. It has been hard being away from them and even in the end of his life, we can not get together and celebrate who he is. My mom does not want us to come visit and I am hesitant do go anywhere during the pandemic. My mom says she just wants me to listen to her and get updates as this all goes on.
Just feeling a lot hopelessness and guilt that we can't do anything more.
What else can I do?
Biggest priority is to be there for your mom. She needs to be able to lean on you "kids" during this difficult time.
As for visiting, if it isn't too late already, that's really a decision each of you has to make - even if mom says she doesn't want you to come. She may just think seeing him in the condition he's in now may be disturbing. However, if YOU feel the need to see him at least one last time, then you have to live with your own decision, go or not go. Seeing him in such a degraded condition might be disturbing, but you might be able to see past that, to see the dad who is still in there somewhere. If you feel you might regret not going to be there, one last time, then go for it. You CAN still travel safely if you are smart about it.
If, on the other hand, you feel his degraded condition (mental and physical) might be too much to bear, perhaps it would be best not to go. It doesn't mean you don't care. By now likely the only one who might benefit from the visit is you - he may even know you or even acknowledge you being there.
Generally when someone is actively on the way out, the facility will make accommodations for visiting. Mom's facility was still in lockdown (IL/AL/MC) when she had a suspected second stroke. They moved her to a vacant AL room, as no one was allowed into the MC area (they can't keep the residents confined in their rooms - AL and IL are more like apartments, so it is easier to ask them to confine themselves.) My daughter and I were allowed in. YB came later with his 2 daughters. I went home for a bit, the girls all went home and I returned later in the evening. YB stayed overnight, and I returned again after he went home to clean up. She passed while I was there, before he came back. We also had hospice and other care-people, the hospice SW and chaplin, who were there when mom passed.
If you decide to go, check with the facility first, to ensure you will be allowed to see him. If all is a go (you want to do it, they will allow visits), be sure to spend some time in person with mom while you're there too. Most likely you can get a test done before going to see mom, to help protect her (unless she's had the vaccine, then just follow the mask/distancing guidelines.)
So, DO be there for mom, she needs you. Do what's right for YOU in regards to visiting your dad.
Is it possible to quarantine yourself for 10-14 days to ensure you aren't exposed, then go get a test and go to visit? You would be able to visit her and possibly dad if facility allows visits.
I live an hour's drive from my mom which is not considered a bad drive in Texas. My sisters live in other states. I visit my mom twice a week and deal with hospice, caregivers, shopping and anything else she needs. Between them, my sisters have only visited once since Covid. That is their call, but I support them. They both call my mom on the phone twice a week and we have a weekly video-chat that I set up with my mom.
My sisters and I have weekly phone calls during which we discuss what is going on with my mom, and together we make any decisions.
Even though they are not able to help with any chores or visit, I consider myself to be very blessed just to have their emotional support and to have them listening to me and getting updates..
Since I have cared for many terminal clients as an RN, I would suggest that it would be best to help your mom with your dad's "life tasks." It seems that every client held on until they could complete whatever life tasks were important to him or her. Some need visits with family and friends to say good bye - those can take the form of video phone calls during this pandemic. Some need to be assured that bills, pets, homes, or other matters will be attended to. Some may need assurances that dependent family members will be cared for. Some need to "have permission" from loved ones that it is OK to leave. Some need the comfort of religious end of life practices - like last rites - from their faith leader. When those are completed, the person can relax and pass from life. Some pass while loved ones are gathered around while others wait until they are alone to pass.
Another difficult task is planning a memorial service. Talk to your mom about what "favorites" of your father that the family would like to remember together. Gather pictures and stories from his life and present them to your mom as a gift after dad has passed.
For more ideas and help, contact a local grief group. I like GriefShare since the members help each other through the grief process. They have the best ideas since they all are going through the same thing - coping with death of a loved one.
While it would be great to see dad it is mom that would need your support and comfort
Hospice will make sure dad is comfortable.
Hospice will also be there for mom with bereavement support. (they will be there for you and your siblings as well)
From your mother’s point of view, she has said she doesn’t want you to come. Is that because she doesn’t need you to be there? Or because she’s worried about infection risk? Does she understand how close he is to the end of his life? If she genuinely doesn’t need you to be there in person, and you and your dad don’t need you to be there in person, then don’t stress about it. Just talking to your mother and listening and, most importantly hearing, is invaluable support. Your mother has been living up close to this situation for 6 years and probably recognises more than you that death is not always the worse thing that can happen. But she will need to talk it through and she doesn’t have her life partner to do that with. Children are the next best thing. So do NOT underestimate how much support your are giving even from far away. Bless you all on this difficult journey.
I think it's kind of up to you whether you go out to see him before he passes. Your mom doesn't get to choose for you. I think there are usually exceptions to be able to visit someone when they are actively dying.
OTOH, I am not convinced that you HAVE to go. It's OK to not see someone when they're dying. You can think about it and decide it you NEED to go for your peace of mind or if you can come to terms with the distance, etc. making it too difficult. If you're uncomfortable traveling right now, then it's OK for you to stay home and support your mom from afar. All the choices are OK and not going does not make you a bad person in any way.
Try not to feel guilty and just do your best. Good luck.