How do I cope? What do I do?
I have been taking care of my 95-year-old Mom for the past two years. She continues to decline and is now bedridden. The hospice nurse thinks she make have a few weeks left, but that is always a guess because Mom has surprised us in the past.
Over the past year, there have been very trying times. I had to learn what to do as I went along. Most things were instinctive. Maybe that is part of being a mom myself. I don't know. But, those times were not has hard as what I am going through now.
Since last Friday, Mom has really started to go downhill. She may have had a TIA the week before that, so what she is going through now may have resulted from that.
Two weeks ago, during one of her lucid moments in the morning, she told me she was dying. I asked her what she said to see if she would repeat it, and she did. She has aphasia, so you can't make out what she is saying most of the time. This time it was clear.
She is not eating or drinking much. She has her eyes closed most of the time and mumbles. By the sound of her voice, though, it seems like she is uncomfortable. Sometimes I think she is hungry, but she won't eat much at all. (She just ate 1/2 of a yogurt.) Then I think it is her kidneys that is causing pain because, at times, her urine seems dark. But, how do I know if that is causing her pain???
Yesterday, I started giving her Lorazepam to calm her, which has seemed to help, though she sleeps for hours afterwards. My brother, who lives with her, is against giving that to her. He seems to think "she'll be okay" if he just talks to her. He is in the hospital (again), so he is not around to see what she is now doing. When he calls and asks how she is, I just tell him that she is quiet.
I guess my point of this is that I don't know what to do. I am by myself most of the time. I have never been around anyone who was dying, or who has died in my presence. I refused to even go with my husband to put my dog down! The hospice nurse has told me that Mom is only going to eat what her body needs. Then I hear her stomach growling, but she barely opens her mouth to get a spoon of yogurt in. As of a few days ago, she doesn't seem to know how to use a straw anymore (normal disease progression). But, the drinks contain Senna to keep her bowels moving since she can't do it on her own.
It is sad. As I look back over the past year or so, as frustrating as she was then, this is probably the hardest part of it all. I don't want her to be uncomfortable. I just feel that I don't know the right thing to do anymore.
I have been told, and I believe it’s true, that people hear when they are dying, well after they can no longer speak. You have to speak loudly for them to hear. With my mother, who died at home with me, her doctor leaned down and almost shouted in her ear, and her face responded to show that she heard..
Don’t be afraid. There is nothing that you can do wrong when someone is dying, so long as you cope with pain. Hospice or your doctor should give you enough morphine for that. Do what will make you feel better, and make them feel better if you think that they really do hear you. Perhaps the feeling of love will get to them, even if they seem unconscious.
Best wishes, in this journey and in the days that follow after it. Try to get enough sleep – there is a lot to cope with - death doesn't mean that it is all over. Lots of love, Margaret
Wetting the lips help a lot. Talking and singing (you or other media) your mom’s favorite songs to comfort both of you. Tell her it’s okay to go, etc.. I remember coming here to update my mom’s status because it helped me to see it in writing what I was still trying to deny. You may be physically alone in your mom’s final journey, but you do have cyber support here whenever you need it. Take care. Our thoughts are with you.
First thank you for the support. It is appreciated.
The hospice nurse did stop by on Friday. Since Mom is only taking sips of a drink, she said she probably only has a few days. The on-call hospice nurse called every day since then to see how she is. The regular nurse will stop by tomorrow. Mom has not opened her eyes in a few days.
Mom has needed Lorazepam about every 6 hours. The nurse said that agitation and pain can overlap, and that based on her body movements and facial expression, she evaluated her pain as a five out of 10.
The past two mornings, Mom did sip some drink. She will also eat a little applesauce. Again, I don’t force her.
My oldest brother came home from the hospital yesterday, but does not know yet what the hospice nurse said about Mom only having a few days. He had heart procedures done, so my other brother thought it was best to not give him the whole story right away. I heard that he did laugh because he said he tapped Mom on the leg (I imagine not too lightly, knowing him) and he said Mom hit him back. He thought it was funny. He has no idea what is going on. Mom is not happy about being changed or touched. I haven’t even changed her top in two days because she sounds like she is in pain when I move her. So, getting her Depends changed is enough for me.
I told my husband last night that I feel like I did everything. I have been the main caregiver. I saw the writing on the wall a few years ago, and had Mom give me financial POA. I arranged for hospice. I arranged for caregivers to relieve me. (I was 60 years old when I started, and the youngest of 5.) But, as I listened to the nurse on Firday, telling me what to do for Mom and what to watch for, I felt as though I wouldn’t remember everything. One thing I am not, is a health care provider.... Mom was the only nurse in the family.
Then I told my second brother that when Mom passes, I will no longer have financial POA, and that it would revert to the personal representative on the Will, which is my oldest brother who had the heart procedures. I said if he cannot take care of that, then the other siblings can elect someone else. This brother said, “I nominate you!” What ?? No thank you. I have done my share. Someone else can step up. I did tell him that he can take care of the arrangements.
So, I am plugging along today. I was really depressed yesterday, but after I got home and started to get involved in something, I felt better. I did sleep better last night in my own bed. (I had spent the night at Mom’s house since Tuesday while my brother was in the hospital.) I have so far not cried today. Mom has been quiet. I want it to be over, but I know that I will be so sad....
The body starts to shut down. My Mom closed her eyes and never opened them again. Then she wouldn't let the staff get her out of bed. Stopped eating and couldn't swallow. After a week of this I called Hospice in. She was gone 6 days later.
The body starts to shut down. Trying to feed them then may do more harm then good. The body is no longer digesting food. I really do think they know when its their time. My Dad did but hung in there for Thanksgiving.
Sometimes there are clear signs that death is imminent, sometimes not. If your mom isn't hungry, don't try to get her to eat. Her body knows what it's doing. Her urine will be dark if she isn't taking in much fluid. That too is part of the process. Don't force fluid on her.
One thing I always did for my patients because it's what I would want in their situation was keep the mouth and lips moist. Did hospice leave sponge sticks there? You can water those down and swab your mom's mouth and lips. I would also apply Chapstik to my patient's lips. It's soothing.
Take a few minutes and sit by her bedside. Talk to her. Comfort her. Remind her of a fun family vacation or a particular holiday that was special. Your mom may not be able to reply but she can perhaps hear you. Touch her hand. Kiss her forehead. Tell her you love her.
You're doing fine. There's not a lot you can do for her at this point but provide comfort. Try to take some time for yourself as well. You don't need to sit beside your mom around the clock.
I know that in some places there are volunteers who will come and sit with you, have you asked your hospice provider about this?
I hired a retired Stare Registered Nurse for one day every week when I was Caring for my Mom and She was fabilous. Mom adored The Nurse and I must admit It really did take the heat off of me. Nurse showered Mom every Tuesday when She arrived as I changed the sheets and bed clothes, and in no time at all Mom looked like a Princess. Nurses are so dedicated and thorough and highly trained I could not praise Them enough.
Talk to your Mom. Tell her how much you love her and reminisce about some activity that the two of you did together that makes you feel all "warm & fuzzy" inside whenever you think of it.
As to the Executor of your Mom's Will, if you don't want to do it, then don't.
I am sorry that your older brother is having health problems at the same time that your Mom's health is failing. Unfortunately, you and your second brother might need to tell the brother who just got out of the hospital the truth very soon before your Mom's health status declines even further. The brother who had the heart procedures needs to know that his actions ("tapping" his Mom on her leg) can and most likely did cause her pain which is why "she hit him" and that he should never do that again. How would your Mom's death affect the brother who had the heart procedures if no one told him that his Mom was so close to death? Ask the regular hospice nurse to explain your Mom's status to that brother on Monday.
Stay strong and be the support that your Mom needs during this time. {{{HUGS}}}
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