I enrolled my mother in hospice on 7/31/206 and since then she has been in a rapid decline. She has told me she doesn’t like everyone coming into the home. Also my sister moved into help me and she didn’t like that. She has basically stopped eating completely lost a lot of weight and is in misery all the time. She basically can’t get out of bed and does have some dementia. One month ago she was still eating and able to get out of bed and sit on the couch. It is just such a rapid decline since hospice started. She is 94 years old and I alone was her caregiver over the last 4 years and she told me several times she just wanted me to be her caregiver. I don’t know it just seems that rapid decline started when hospice started. I am questioning if by me doing this caused this to happen so fast. I don’t like seeing the misery she is now in. The people from hospice are nice but they don’t give me any answers really.
Dying and death, whether for the "patient" or for the patient's family, are not fun. I didn't like seeing my mom's suffering for the final year or so of her life; I'm sure she would have been suffering more and I would have felt worse about it if she had been at home and if she had not been receiving hospice care.
Do you feel Hospice is helping you? IMO, if having them there is upsetting Mom, then let them go for now. The anxiety of having strangers around is not good for her either. Now your sister being around, tell Mom you can't care for her alone anymore. Remind her you too are a Senior and don't have the strength and energy you used to have. If you do stop Hospice for now, see if Dr can have PT come in and evaluate her.
If you feel Hospice has helped you and her then keep them.
you can get an added layer of a tag team through a private company. It truly helped me. They controlled the meds, cleaning, caring, and everything in between.,
She is trying to control her environment, and that means her body is included..
we all know, we don't get off this earth the same way we came in to it..
this earth is a circle with a revolving door.. kinda...I don't recall if I've entered twice..
it's not your fault..
DEPART THE GUILT TRAIN ASAP!!
It's going to derail if you don't..😟 JUST KNOW YOUR MOM LOVES YOU.
One person... you can only dig in your claws for so long...hang in there...
do you remember PE Classes snd the physicals ED testing? You passed if you could run so many laps do so many pull-ups. Do so many push-ups or hang with your head above the bar for so many minutes...
Well, I think you passed the physical ED exam and more.. and you did this test for four years by yourself. Do not feel guilty..
Make this train ride first class and play music, flowers fun and treats make this adventure happy as much as you can. Bring the party to her and friends
Can you check with her medical people about why she is dying, and how long the process is likely to take? Hospice staff are to provide comfort, so you may need to get back to her doctor. One thing is almost certain – you aren’t causing her death to come any quicker. Have courage, it's a difficult time and hard to witness.
The things she is telling you, for instance that she didn't like your sister moving in to help, are most likely not well thought out and are the workings of a mind that is no longer at its best. She's 94! She knows she doesn't have much time left, and she's bitter, unhappy about it, and understands that there is no way out. She clearly has little empathy for you. If she did, she wouldn't be telling you that she doesn't want you to have the help that you so clearly need. Again, she can't help losing her ability to empathize. She's old and tired. We will all be that way someday.
It may seem as if I'm picking on your mom by saying all those things, but that's not my intention. I'm trying to make you see that she is not her normal self and she can't help it. Please don't take her so seriously. Change the subject when she starts in with all the negative stuff. Don't doubt the wisdom of your decision in bringing in hospice. It was necessary. It will help you as you move through the process.
I'm not sure what answers you'd want from the hospice team? They cannot wave a magic wand to take you back 30 years or fix her worn-out body. They can be honest. They can provide medical attention to mom that you can't do yourself. They can provide your mom with the means to navigate this part of her life journey with little or no pain. I am quite sure you will appreciate that when the time comes.
I'm so sorry you are losing your beloved mother. Give yourself credit for being the most loving son you could be. I wish you only the best.
Her decline could be unrelated to having Hospice on board. She may have declined anyway is what I'm saying.
What prompted you to start Hospice and have you changed your caregiving routine?
If having too many people around all the time is making your mother miserable, talk with the Hospice nurse about how you can be more respectful of your mother's wishes. The nurse has to visit and see her before prescribing medications.
What new medications is your mother taking since Hospice has been involved?
Could she be having a negative reaction to the medication?
If you don't need the services that Hospice is providing; ie: nurse visits weekly, strong pain medication, bathing assistance, a chaplain, then consider terminating hospice for now, if it really bothers your mother having them there.
If having your sister in the home is causing undue stress for your mother, I would reconsider - do you need your sister there? Is she just creating more turmoil?
If you really need her help, then your mother will just have to get over it. You are providing her care, and if you need help, then mom will have to accept it.
If providing her care becomes too much for you as your mother declines, it is ok to place her in a skilled nursing facility equipped to manage her needs. Or find a hospice care in-patient facility.
It's hard to watch someone you love decline over time but be grateful that hospice is there to help you with any questions or concerns you may have.
And as your mom gets closer to dying you can request that she be brought to the hospice home(if your hospice has one)where they will take care of your mom there and you don't have to continue witnessing her decline on a daily basis, but can come and visit when you want to.
And moms hospice nurse and the hospice office is there 24/7 to answer any questions you may have, but you have to use your voice to ask them, and not be afraid to continue asking until you get the answers you need.
Your moms in good hands, so just enjoy whatever time you may have left with your her.
Rapid declines do happen on or off Hospice.
Stopping eating and drinking is common as the body prepares for End of Life. her nutrition needs are not what they once were and to force food or fluids when she does not want or need them can cause more harm than good. The body stops digesting food and it does begin to use stored fat for the energy it needs to keep the heart, lungs, kidneys and brain functioning. But they also will begin to shut down.
I am surprised the Hospice Team is not addressing your concerns. They should. And you can always call and talk to the Team Manager. You can also ask to talk to the Social Worker or the Chaplain and ask them to help the staff address your concerns.
I am sure what your mom is not liking (with all the people coming and going) is the loss of her independence and knowing that she needs these people to help her.
If you truly think this is a mistake you can drop the Hospice and continue with mom's previous medical care. But it does sound like mom does need full time care so not just your sister but caregivers to come in and help her do the tasks that Hospice has been doing. And you should talk to mom's doctor about ordering all the equipment that Hospice has provided (if they have provided any) as that will be removed when she withdraws from Hospice.
A month ago, my friend with dementia in MC knew her brother and now she doesn't. Her dementia is getting worse. Its the process and its heart breaking and its sometimes hard to process. The best thing you can do is make her comfortable. And don't hesitate to call hospice and the nurse can come to your house. Ask questions! They can give you more information as to what is happening and what to do for your mom and what to expect. xo
You've been posting about moms decline for months now. It's still going on, as happens in end of life situations, and it's hard to witness. No matter what you do, she will decline. Try not to second guess everybody and everything. Keep mom as comfortable as humanly possible by allowing her to sleep when she wants to, eat or not eat when she wants to, and to call the shots as she sees them. You've been and continue to be a wonderful son to her, so try to relax a bit in the knowledge that God's got this.