My mom is in the end stages of Dementia, living at a Memory Care Facility within a mile of my home...Due to Covid-19; I have not been able to see her since March 17th (I used to see her 2x daily (and she had been thriving), except on Sundays (my brother would visit then) and am fortunate to FaceTime with her 6 days a week; however, I can feel her slipping away from me more and more every second of every minute of every conversation every time I talk to her.
I am grateful to have all those FaceTime memories, those bleeps of Mom but I can feel the end is nearing. I went and spoke with the Executive Director early today begging him to let me spend time with my mom before she loses her battle. I can't bear the thought of her not being there for her when she's struggling with everything. This is slowly killing me!! I am at a loss.
Executive Director just called and said So, sorry we can't let you see her but, I have to tell you the nurse called her Dr today because she's lost her appetite and you do have the option to take her home. I asked how many meals she had to miss before I could see her again... to which he said they would keep us posted. REALLY?? That's the best you can do! Help Me!!! Who has the final word at a Facility?
I have been living with my Dad for the last 3 years or so. When his level of care was get more than his quality of life. That’s what I did with my Dad.
I look at hospice as a fork in the road. I called Sutter hospice. Just knowing I and he had the control, is priceless. My father passed away in his home having contact with friends and family in communication with him.
Your decision has to be based on what I always use - what can you live with? If you want to be near her, your home (or another sibling/relative) is really your only option at this point. You can also request hospice assistance in your home to get some nursing care and possibly other help via her medicare or insurance.
FloridaGirl, I don't know your personal situation, but I've got two 'absent' sisters, and no matter the decision I make, I expect to be criticized because everyone's level of what they can live with is unique. I've grown up and learned about myself a LOT since I've taken on this 'job' --and for that I am grateful. My best to you in this difficult time.
The management does have last say who can come and go inside the facility. My brother only got to see our mom for one day before she passed. You need to realize if you bring your mom home that there is a chance she may bounce back and possibility live another year or more. Are you ready to take care of her of her every need for that amount of time 24/7? Ask the Director if she should become bedridden and to what point would they allow you to come in to be with her before she passes. I believe that they will allow one person to come in as long as all precautions are taken when it is at the end of their life. I know it is hard especially during this pandemic, but remember it is for everyone's protection, as hard as it is when is comes to family.
over an hours time and she would eventually eat everything. We also turned to
hospice in the last few weeks of life and they were wonderful and she passed away at home. The nursing center generally meant well but their staff had neither the time or patience to deal with the eating problem.
this was during COVID 19
everyday we just prayed for elders in care homes
My point is, if you can care for him at home I would. I'm getting ready to.
Check with whatever resources are in your town and see about getting a medical waiver to help you with expenses. If you have a military family check with the Veterans Administration in your area for programs to help, they can get you a care caregiver, hours vary but it's better than nothing and we talk about what care is needed or any other help. Become friends with them.
I would bring her home, until then take her some food or sauce for her food so when she gets fed & wants to eat she'll eat some.
I never even met the doctor wonder if they have one. Keep Calling the Director &/or director of nursing until you get her home, talk to her primary nurse become friends so she'll really tell you what's going on.The Covid certainly doesn't help.
Photogal 425 said to talk to Hospice, I think I will too as I never thought to do that.
God bless, I Hope's this helps.
Take her home.
Be sure to get your Power of Attorney, there are a few other documents you may want to get if you don't have then yet. I can't think of them at the moment. I'll try to remember to post them later or remind me .
My heart aches for you. My advice is to contact hospice, get your home set up and bring your Mom home. Hospice will help every step of the way. Not only for your mom but for your family too. Best Wishes for your decision.
Also, people with end-stage ALzheimer's simply forgot how to swallow. You can always get a feeding tube. It kept my mom alive a long time and I did not have to watch her die of dehydration which can take weeks. Check residuals to see if she is digesting properly. Mom never had a problem with it, but when started retaining feeding and water I stopped--but she was dying of liver failure from cancer. Alzheimer's did NOT kill mom. Cancer did...but she died without pain, and medications are very easy to give with a feeding tube.
please understand what hospice will provide, either at home or in facility. They are not providing regular nursing or hospice aide visits. They can still provide equipment but if you bring her home, you will be providing care 24/7. You may be able to hire caregivers but that is private pay. She should qualify for hospice but if she really has not eaten or taken any liquids for 2 day’s , she may not have much time left. This may not reverse if she is at home. If she won’t swallow, then you will need to prepare yourself for a few days of watching her die. She may rally of course. They should send out urinalysis ASAP just to be sure. If UTI is present, treatment may make a difference.
It is very sad the way people’s lives have ended due to this virus but even had you been able to keep seeing her, the “slipping away” is how it happens.
Under no circumstances will they allow anyone to visit other than medical or hospice in the NH my brother is in. Interesting because a hospice worker brought the virus into the NH and they lost 6 patient's. My brother tested positive, but thanks to God, he was asymptomatic.
If you haven't already, call Hospice. They will know exactly what you can and can not do. I would just take her home and have home care. Medicare covers most of it and hospice is there as well. When my husband was dying I brought him home when it got to that point. It made me feel better having him in the comforts of his home. We set the dining room up as a bedroom for him with the hospital bed and all the necessary equipment needed. You do have limited choices. Make whatever decisions you need to make and keep yourself in the emotion loop. You need your strength. Prayers to your Mom and you.
you should have taken her out of the home during the Civid and she would still be striving.
I would go get her today znd have her brought to your home and I can guarantee you she'll start eating again.
as of now. She doesn't have the desire to live, so she won't.
You do have the right to remove your mother from the facility and to bring her to your house or another facility if one will accept her during this pandemic period. This situation is so hard on everyone and everyone's nerves are fraying. Although I know you see the facility director as being unfair to you because you desperately want to see your mother from my perspective the facility director is doing everything he/she can to keep all the residents safe. Different side, same coin.
BEFORE YOU DECIDE ON THAT... MAKE SURE THERE IS NO NEGLIGENCE ON THEIR PART... CHECK HER OUT FOR BED SORES = PRESSURE SORES AND UTI..; If that person is saying ; YOU HAVE THE OPTION.... THEY MAY HAVE GIVEN HER AN ISSUE OR PROBLEM, which they would not want to admit.
praying for you. good luck
Urinary Tract Infections can go from 0 to 100 in a very quick moment. This can cause all sorts of havoc on the mind, brain, blood stream, bladder, kidneys, and if to goes that far.... VERY DANGEROUS, VERY QUICKLY.
Once that gets into the blood stream, things can happen so fast, you don't know what has hit them.
Since they are so adamant about YOU NOT VISITING, They may be trying to hide something?
Again, I am not a professional, but do look at your options
The ED said they didn't feel she was slipping away, I said how much time have you spent with my mom in last 72 hours; to which I received a change of subject. I understand that it's not his job to CareGive to my mom but, I do question his ability to determine how my mom is doing mentally and emotionally. In my experience with him and our conversations over the past year; he has proven to me that although I've being happy with Moms care (for the most part), there is an absolute issue with communication between CG's-Nurses-Admin-and ED and families. My mom is not yet in hospice although her doctor has been called due to the fact she hasn't eaten breakfast for 2 days, we are to get an update on her weight and meal consumption on Thursday. I should clarify "slipping away", she's declining quickly and she obviously cannot understand why I can't see her. She seems to be losing the will to live and I know that the disease is progressing but, I really feel like our contact would help. We are considering bringing her home.
Take your plastic disposable gloves, and do check her lower regions for bedsores, pull out her diaper or down, and check. and do this to her feet, elbows, side of feet, and hips or other areas of contact.
Perhaps, she has them, and that is why they wont let you see her?
JUST TELL SOCIAL WORKER THAT SHE IN IMMOBILE AND CANNOT MOVE, YOU ARE CONCERNED ABOUT PRESSURE SORES, ESPECIALLY SINCE YOU ARE NOT ALLOWED TO CHECK IN ON HER. You are not the professional.
THEY WILL NOT DENY THE PROFESSIONAL TO CHECK HER OUT...
ON THAT NOTE: TELL INSURANCE,Where? A few places seemed to be a bit "pink" can you come out and take a look?
That my friend, can be called CARE NEGLIGENCE. and SHOULD BE EVALUATED. Usually in the bottom area. Pressure sores = bed sores, should your mom be Immobile. Does she have mobility issues? Could she have been placed in a position that may possibly cause her not be physically able to turn, to relieve pressure on a certain spot, like the tail bone area, or the feet or heels, or elbow, or other places on body?
YOU DON'T KNOW -- YOU ARE NOT A MEDICAL PROFESSIONAL,
YOU WANT YOUR MOM EVALUATED FOR IN HOME OR HOSPICE CARE.