I work full time from home, and she has lived with me for over 4 years. She is in the end stage of Alzheimer's. She is 100% disabled and on hospice for a year and 2 months. I hold my breath every morning when I go to get her up. I want her to be comfortable and safe and of course I don't "want" her to die. But I am reaching extreme anxiety levels here, always ready for the hammer to fall. Do they just slip away one day from this disease? Or do they die due to an illness, infection, etc? Is that "going peacefully in their sleep" line just a lie? If it is, at least I can relax and not be expecting it all the time. She has no infections, skin breakdowns, breathing problems. Her actual health as far as all that is great. She takes in fluids and pureed foods with some minor swallowing issues, but her intake is still relatively good. Thank you. This is the first time I've ever asked a question.
Not everybody passes in the same manner. In fact, any of us could die in our sleep at anytime. I am explaining this because there are some factual clinical signs that a person in the dying process goes through. An R.N., hospice nurse can identify clinical symptoms (observable) signs a person in the active dying process has.
A lay person can learn to identify signs, such as a change in breathing: (Cheyne-Stokes respiration); mottling of the extremities; and other indications death is nearer to hours instead of weeks, months. Some family would not want to know this much, but if you want to know, ask the hospice nurse. Or go online. Or ask experts here.
Your emotions are on high alert, that is understandable. Some people have been comforted by changing perspectives. Instead of my mother is dying of Alzheimer's, they learn to accept: "My mother is living with Alzheimer's."
Saying it, understanding the tiny word difference may help a bit.
CWillie had a good insight.
Welcome to the AC forum!
And, in agreement with Countrymouse, a break from the caregiving and thinking about this 24/7 is required for your health and sanity. Even the hospice nurses burn out and are required to take breaks.
So how does a hospice nurse know what to say if a family member doesn’t want to know?
I go back and forth about how I feel. It’s hard. Can’t go by age. My mom always says to me that she can’t believe she is 93. My cousin is 97. My uncle lived to be 96. Geeeez, I don’t want to live that long.
Life isn’t fair. We all know that. Doesn’t make it any easier to accept though. I wish it was different for you. I wish you still had your son. I have two children and I can’t imagine them not being in this world anymore.
A therapist once explained grief to me as waves. It’s true and those big waves can really knock us down. I’m so sorry you are grieving at the same time as caregiving. That’s an awful lot to endure. I hope there is peace in your future. Don’t apologize to anyone for how you are feeling. You feel what you feel. I’m not going to say any dumb cliches to you. You don’t need to hear that at this time. Sometimes I feel like telling people to shut up and go write a Hallmark card! Haha. We can all get in moods or go through bitter times. Doesn’t mean you are a rotten person. Obviously, you aren’t. You are doing one of the most selfless jobs, sometimes thankless job, of caring for someone. It’s hard. It’s damn hard!
You are caring to us on this forum even not being there physically for your mom. We all do what we can do. Not always possible for everyone to be there for a parent physically. Doesn’t necessarily mean they don’t care. Each case is individual. Same as 24/7 caregivers like me. Fine line because if we burn out, we won’t do our best.
I was complementing you on being caring on this forum most of all. We that are going through issues benefit from others who have reached the other side. It helps.
With my Mom it was anxiety so bad they had to medicate her. Then it was not wanting to get out of bed. Then closing her eyes and not opening them but she responded to touch and speech. Then not being able to swallow. Hospice was brought in at this point. Six days later she was gone. 20 minutes after my nephew and I visited. The nurse asked me if nephew was the last one that needed to see her. I said yes, because of his disabilities she worried about him. She says she has seen it many times. She has asked family if there is one person who hasn't said goodbye. If answer is yes, she tells them to get them on the phone, put it up to the persons ear and have the person tell them goodbye. Not long after the person passes.
Hold her hand and tell her its OK to go. That everyone will miss her but you all will be OK.
My brother was at an end of life hospice facility. The waiting is so hard. Once, he even left but he had to go back. That time he eventually died. But it wasn’t a year like your mom.
I too relied on what nurses said. It’s really strange because some who are really sick hang on and others who look like they have a fighting chance die.
Almost like, a crap shoot. When your number comes up it is time to go. When it’s not your time. It’s not.
Even when it isn’t illness. I’ve had a gun pointed to my heart in a robbery and I panicked big time! Well, of course I pissed the burglar off and he started to panic because I was frozen. Hey, I was only 17, at my summer job. He finally spoke to me and said if I didn’t give him the money I would be dead. The word dead clicked with me enough to snap out of it. I gave him the money.
I basically went from being frozen to begging for my life. He made me lie face down on the floor and asked me to give him 15 minutes before calling the police, which I did. My boss had always told me not try and protect the money but to save my life if I was robbed. Anyway, wasn’t my time to die.
Others can help answer about ALZ and dimentia. My mom has not experienced that. How is that determined? I’m curious about that. I know that some Parkinson’s patients do get dimentia and hallucinations.
It’s difficult to say because disease or illness effects everyone differently.
I’ve had mom since 2005 living with me. I know what you’re saying in that regard too, it’s just plain exhausting and it does create anxiety as well.
I’m not sure if I offered any help or not but I hope my understanding of the situation is some comfort. It is a comfort to me to get feedback from the lovely people on this site. Hugs!