This patient spends every waking moment sobbing, shaking, begging to die, does not recognize any family or friends, doesn't know where she sleeps or eats, is highly agitated when not heavily medicated, basically not one ounce or "quality of life" or "dignity" remaining. Why?
I know I would need a break I just know it because I had her here for 2 years and I was burning out.....She only gets to keep 35 dollars a month for herself; the rest of her SS goes to the NH. I'd get my UAL retirement and could receive the 11.50 an hours as mom's caretaker but there is no way we could afford respite.
For the person wanting to take mom outside in the fresh air; medicaid medi cal or medicare and hospice all or some of these, will lend you a hoyer lift; an absolute miracle. My friend was able to move her father into bed and out of bed and into wheel chair with this and he could sit at the family table or be taken outside. I know hospice will provide one for sure! it is a must have!
Mom gets a sleeping med about 8:30 p.m. each night sometimes it works and sometimes she gets up a few times.. whenever I am next to her on the bed watching lawyer shows in the afternoon she sleeps without difficulty; when she spends the night she sleeps all the way through...is it being with me or coincidence
I look back now and wonder if it would have been better for her to have died on the day she went into cardiac arrest. I feel guilty for feeling that at times. I want my Mom to leave this world with her dignity. For her life is changing quickly. I love her so much yet, I know she has already deid . This is not my Mother.
We put our pets down when there is no hope and we do not want them to suffer, yet humans must stay alive and loose all quality of life, dignity etc. I have already told my partner that if I get this disease, I will end it when I feel , I can no longer control my words, actions etc. I wish we as humans had more compassion and mercy than we do for our pets.
I'm hoping my sister who lives 15 minutes away will help out some this summer while school is out. The Hospice that provides moms care has volunteers and I do have a couple of good friends that come and sit with mom occasionally. I hate to ask, but they are so willing and I know I need time away. I do run out to the store or pay bills and I go to church on Sundays, but I don't like to leave her by herself for very long. As the end draws closer I know it will become more stressful and mom will require more attention.
My mom is bed-ridden she has a new scooter that she has only been in once but I can't get her up by myself. I would love to be able to get her out of bed and take her outside for some fresh air at least. It's so hard to watch her slowly fade away, but I'm so glad I'm here and she's not in some nursing home. I cherish the time we have together and just try and make her as comfortable as possible.
I no longer worry about her diet whatever she wants she gets - used to limit her intake of coke, but the doctor said no need to worry give her what she wants.
There are resources out there, but you may have to do some research go online and see what you can find. Try calling VISTA,s Innovative Hospice Care listed on this site 877-658-2908. I wish you strength, courage, patience and persistence. God Bless
I moved cross-country in Nov 2011 to take care of my mother who has dementia/alsheimers. It was not easy but since I was a window I was too far from family and it felt like the right and logical thing to do. In May I had to take mom to the hospital because her blood pressure was really low and she was very weak. That is when we got the diagnosis of Cancer. Not just cancer but pancreatic, liver and gallbladder cancer in advance stage. My mom is 85 and the docs said with her age and condition there is no treatment. So she is at home now under Hospice care. However the majority of the care still falls on me, but the Hospice team has been great. I know as the disease progresses that the Hospice team will come more frequently and stay longer.
The Hospice doctor said I can stop giving mom all the supplements she was taking (Vitamins B,C,D calcium, multi-vitamins). So now I only give her the prescription meds - especially the dementia meds and blood pressure. I want her to keep her dignity and faculties as much as possible. I think it would be too hard for me to care for her if she didn't know who I was. It's not easy by any means, I have no social life right now other than 1 1/2 hrs that I go to church on Sundays. However, my mom is important to me as she sacrificed many years for me so now it's time for me to give back. I know everyone is not in a position to put their life on hold and take care of their parents. Trust me if I didn't have my military retirement then I probably wouldn't be able to do this either. With my retirement and stipend from my GI Bill (I'm a full-time student)(online) I can maintain my bills and responsibilities and still take care of my mom and earn my degree. So it's a win-win situation in my case.
I hope you can figure out a better solution for your mothers situation so she can live the rest of her days out in dignity, comfort and most of all peace. God bless you both.
I agree with you about people who pass away naturally and peacefully - it is referred to as a blessed death and truly it is. I wish you could get Hospice in there to take over - this seems to be out of control and not the best example of our medical professionals. Your mother is suffering mental anguish and so are you by having to watch and not be able to help her. At this stage, she should be resting comfortably and at peace.......hopefully someone will come along and help and guide you. I will keep you in my thoughts and prayers. I just feel really, really badly you are gong through this. It is quite upsetting to say the least.
Also, when I am not satisfied when my mother is having a problem, I track down her doctor - he is the one we chose for the nursing home - and is not easily available. Don't know if the nurses like me going over their heads, but there are times that they are extremely busy and I realize this, so I just go ahead and call the doctor and leave messages until I hear from him. My heart breaks for you and your mother. And, yes isn't it something when the professionals can be total idiots saying your poor mother is "playing you". Blessings to you. Take care.
Your mother is "playing you"?!! Well, now you have an explanation for all her suffering. Can't professionals sound like total idiots sometimes?
And I know this sounds trite and impossible, but please try to take care of yourself, too. It is what your mother would want.
Doctors Encouraged to Discuss Care Options, and Goals With Patients and Caregivers
https://www.agingcare.com/News/doctors-discuss-care-options-with-patients-149886.htm
It would not have been appropriate for them to stop treating me because of my anguish. I had an excellent chance to recover (and, obviously, I did). But if I'd had terminal cancer or was in late stage dementia, I would have wanted comfort measures above all else. Hospice understands that.