Dear AC Forum,
My mom is 96, dementia, CHF, pacemaker dependent. Today she is sleeping all day, has a hard time staying awake for much, she uses a walker and walks very slowly but says she can't do that today and is very adamant about it. She usually is cold, but today is not. She looks puffy. I should give her a lasix. The doc took it away and said use as needed. Her feet aren't puffy, but the rest of her looks that way.
I have a stomach full of butterflies, feeling nervous and unsettled. I don't do this part of life well at all. A million thoughts go through my mind. I first beat myself up for not doing better, though I think I've done as good as I could knowing the least about caregiving and what to do for the elderly in this situation and coming into it absolutely with no knowledge and learning along the way. I've tried to maintain my life, but that hasn't happened, as my mom has always come first. Part of me says I could have done better, but that's probably because I was brought up with my parents saying, "you can always do better." So your best was never good enough. Makes one an over achiever and never satisfied unless the job is perfect - hence also hard to take any criticism because I've always laid myself out there.
Part of me is glad I could keep her out of a NH and give her some dignity after what she went through before she got to our house.
And a bigger part of me is afraid of losing her and knowing I'll be without my best friend for the rest of my life. In spite of not having that kind of a relationship for several years. So part of me is mourning loss already.
I don't know how to feel or what to do.
If you care to share your story or thoughts, please do. Though, please don't rake me over the coals, I can do a good job of that myself.
Thank you,
LastOne
My sibs didn't want to bother having a 90th bday gathering. That was 2 years ago. Each day is a challenge but also a gift for us to learn from....They made funeral arrangements, etc. But she is still here, giving back in her own way...dignity lost & found...hopefully by my sibs one day.....
I am sorry to those who took offense to my comment to Babalou in my response back to her question of me. But you know, I don't know Babalou and and Babalou doesn't know me either. I think her question was quite personal to me regarding my mom passing away in my home. I don't even think I would ask that question of my best friend if her parent was living with her in her home. And if I did ask my best friend, I would not judge her for saying yes or no to the question. And I would not make her feel bad if she said she would or would not want that situation to go on in her own home. I think that is quite personal and should be respected as such.
Nobody knows what it is like to walk in someone else's shoes unless you have their personality, family dynamics, finances, working and living situation, and relationship with that individual. So until that happens, please be compassionate with that person.
Thank you to those who had compassion and understanding with me.
Thank you so much--
LastOne
"Excellent take on caregiving, lifeexperiences! It is hell."
So, LifeExperiences, what's so offensive about that? I thought it was a compliment.
But for you to refer to her as a "big joke" is really quite insulting.
We're all struggling to do our best, under generally not optimum circumstances. Show some sympathy like the rest of the posters do.
There are times when I am glad I can help my Mom but other times I am so angry and sad that this has been allowed to happen to her. I often feel like I have a knife in my back that is being turned very slowly and painfully. Watching someone decline this way truly can be described as hell. I miss going to her home to have coffee and a good chat with her...and now I watch her bedridden and sleeping a lot of the time here in my home. I wake up each morning and wonder what happened and why did it change so for the worse.
My Mom is also in a facility, not once has my Dad asked to bring her back to their home, I believe he wants to remember the great times they had over the past 72 years then to witness her condition as it is today.
As for the others on the debate to pass away at home or in a hospital/long term care, it is an individual choice. Not everyone can be a caregiver, some of us are seniors ourselves and if I had to physically care for my parents, my parents would outlive me.... I don't believe that is the master plan that my parents wanted for me.
You know where they are at when in bed do they live about 5 yrs like that I don't know. But they live far less in nursing homes in bed about two yrs tops depending on how good the
Y are cared for and how much they want to live personally I hope my husband lives much longer then that 5 I am old
I don't work so my world is him we married for better or worst richer or poor in sickness or in health I did notput a time limit on my love and care if your burned out get help daycare
If possable or part time sitter if not tell them you love them and put them in a rest home you either can do the job or can't they will understand because they love you and you tryed for as long as you could
These symptoms appear...then go away after a few days and come and go. I don't know what to believe... .She is bedridden and on hospice and the hospice team has been great. I have heard that when they can no longer swallow that this is an indicator that it could happen soon. Again with my Mom I would be skeptical but everyone is different.
As for someone dying in the home, everyone is entitled to their beliefs in this matter and I have met people that feel ok about it and others that don't like the idea. It depends where you live too. Many older homes have a long history and there were deaths and many births as well in homes and buildings. We don't know what kind of things occurred on the spot where the home was built beforehand either. When I rent or purchase a property I am first more concerned with it's location and condition and is it affordable!
The residents and staff said she has moments of alertness and she is smiling and cheerful. her BP and vitals are all good and she is on very little medication. I've questioned her doctor and he said they could do alot more tests but to what end? This sleeping has been a gradual but increasing process over the past 2 years. We moved her from assisted living to NH about 10 months ago as I felt she needed more assistance because of the sleeping increase. I am ready for the time when she just doesn't wake up...but wish we had talked more before reaching this point as I already miss her.
Hey, we on this forum come from all different parts of the US and the world. We are of differing belief systems and different socioeconomic groups. We learn from each other.
A couple of months ago, someone said that a poster's mother was lying because the mom said she had an appointment for a lab test on Easter Sunday. It my part of the country, many doctor's office and labs are open EVERY Sunday.
So, I apologized to the OP both privately and on the open forum. Yes, my mom is in a NH.
I do not agree that having someone die in one's home devalues it (as long as it's not murder!). BUT you are certainly entitled to have your own beliefs about this. As long as you realize that others are, too.
http://hospicefoundation.org/End-of-Life-Support-and-Resources/Coping-with-Terminal-Illness/Signs-of-Approaching-Death
I understand your sadness around the loss of your best friend. The next stage.. whatever that brings--is something you can handle.
The best you can do is -- the best you can do---and the best you can do is Enough.
Take care of you, please! Thoughts and prayers for you and your mom.