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
Plus, she's home with family. That's pretty incredible. Others must admire you for your what you've done. I would try to focus on what I know and that I did the right thing in my mind. Then try to find peace with that. Reading comments on sites like this is helpful, IMO. Private counseling or church services helps others. Take care of yourself.
Do you have anything like a BP machine to check that as well as her heart rate? And in conjunction with the latter, when's the last time her pacer was checked?
Another issue is what has she eaten for the last few days? I've learned from this Forum that seniors seem to enjoy sweets and high sugar foods, even if they can cause sugar and energy crashes. Sugary foods certainly do that to me.
If she had some high sugar foods yesterday or yesterday evening, it wouldn't surprise me that she doesn't have much energy today.
So there are some physical issues to get checked first.
I've had limited experience with older people's deaths but one thing I have noticed in some is the skeletal shrinkage. It's quite noticeable, especially in the skull and upper chest areas. But I haven't seen this in everyone who's in a terminal stage, just Easter Europeans. And I'm not drawing any conclusions here - just making a limited observation.
In a facility, it's the responsibility of the nurses - big difference.. more of them, skilled training, quicker access to diagnostics, sometimes physicians on staff or available quickly for phone consults, while home caregivers don't have those advantages and assistance.
For me and others I know who are home caregivers, this self questioning, self doubt, and almost constant state of wondering and worrying goes with the territory. It's not unusual in my experience.
You wrote of the dilemma of not knowing what to do, of the possibility that these days are the last.
A cyberfriend once gave me some excellent advice when my sister was dying but I was in denial. She suggested treating every day, every visit, as if it was in fact the last. I would say what you wanted to express to your mother as these thoughts and desires occur, about her being your best friend, about other positive things in your relationship and lives.
I always thought that was good advice - say it now and don't wait. None of us ever really knows when that last moment will come. I wish I had had that advice when my mother died, although she showed no signs whatsoever.
I have those things. She was just at the doc's office on 7/29 and her labs come through better than mine! I don't think they were going to do any labs on her and I insisted they be done.
Thanks for your reply-- it is greatly appreciated.
LastOne
Thank you for your very kind words. My mom is living with us. The rest of my family has hung her out to dry (along with us - they don't help or seem to care about their mother). So we're in this gig by ourselves. Caregiver is here only 7 hours M-F 9-4pm. - so I can attend to my job and hubby can sleep (he's the night caregiver and lately it's a heck of a job).
This dementia thing is a terrible disease.
LastOne
P.S. It's hard not to use a real name - I keep deleting it! (smile)
Again, thank you for your replies and thoughts. All good. As you may have read I've had her in for labs and doc appointments recently - her labs are better than mine or my hubbies.
Just this afternoon she had a normal moment that made me cry. I gave her a hug. I've told both my parents all my life the good things and have thanked them numerous of times for the good stuff they have done for me. I have not been one to take advantage of someone - especially my parents. I was only 23 when I married, but I didn't let them take the burden of paying for my wedding - I went the cheapest route possible, paid for everything, except food which my mom made (awesomely good), I bought the cake and accessories and had a wedding at my parents farm and invited no friends - only family. My folks invited their friends. I digress.
I just don't know what the end looks like for a dementia person with my mom's ailments.
This is a crazy life and existence.
LastOne
And thank you for the kind words.
On the contrary, I do want to know.
I just know that if I know it's coming - it can't happen at our house. I would have to move out. I could no longer live here.
LastOne
People don't like to buy a house a person dies in. I don't want to live in one that someone has died it. I never have. I will care for her, I just can't have her pass away here - if I know about it. Feels kind of weird and I don't want to live with any spirits here afterwards...just is kind of like that. Kind of a personal thing.
Would you like to have someone die in your home? For me, I like happy memories in my home - not death.
Sorry if that isn't an answer you want from me - but it is the truth.
LastOne
Also, I read your profile. Your person is in a facility. You get to go home to sanity. I have to live in "Insaneville." I don't have a real home anymore. It has been taken over my by mother and caregivers. I have no sanctity, no refuge - I live in this anxiety, hellish world of my mother 24/7. It is very stressful. I think if you had about a week in those shoes - you'd understand quite clearly. In your case you will never have to encounter this situation. So you question sort of is kind of not so nice.
LastOne
Thank you for understanding and being c-o-m-p-a-s-s-i-o-n-a-t-e.
Best-
LastOne
Really?? What did you want to learn from your question about me not wanting to have my mom die in my home that is already riddled with her and leaves me no life. BTW, did you want your mother to die in your home?
LastOne
There is no right or wrong way to feel. But do not ever think you did not do your best and I am sure you made each and every decision with live in your heart. That is all that matters. I can tell you how it was with my mom. My mom could barely stand to move her from bed to wheelchair, to stairchair, to potty to recliner. Although she was very advanced in her dementia and parkinsons she ultimately died from a brain bleed from an old aneurysm. One day she told us she was tired and didn't want to get out of bed, but she did eat a little. Next day hardly any food, still in bed. Her pulse ox (we had one at home) was in the
80's. Monday we took her to the ER, told about the brain bleed and in 48 hours had hospuce set up and brought her home. She lasted a little over 2 weeks. She slept most of the day, had moments of awareness. Slowly her urine decreased and i could no longer get any pulse ox readings. Her passing was the most beautiful and peaceful I have ever seen. It was what I had prayed for. I never left her side the entire time. Honestly I felt relief that my mom was no longer suffering. In my head she was in heaven with her sisters, walking, talking and dancing. I was heartbroken that my mom was gone but have come to realize rhat she is with me everyday. On the day she died i told her if I ever had the chance to see the Ling Island Medium that she better come thru. This was one if the shows we watched together. I miss and think of my mom everyday but know she is in a better place with our Lord. Sorry I was so long and I hope this help you in some small way. P.s. If offered hospice, take it immediately, these are a wonderful group of people that are available to help your mom and you and your family. Wishing you peace and comfort. 😇🙏
Thank you for your kind note and for sharing the story of your experience with your mom. You are a lovely and good hearted person with a ton of love and compassion. Hugs to youl
Rosebush, I get it, but don't think I can walk that mile that you did. Matter of fact, I'm getting close to giving up this ship altogether. My marriage matters to me and it is going away - so is my life and my health and my job is at stake. I think I'd like to outlive my mother. I am 40 years younger than she and I hope that I have lots of road to travel yet, but this is killing me. Every day is getting more difficult to navigate. I want the best for my mother, but I also need to "put on my own proverbial mask" and dang it if it won't come out of the holder and drop down for me. I have to dig that sucker out! My mother's mask is there - but not mine or my husband's. Something is seriously wrong with this picture and I think I'm seeing I need to love myself and take care of myself and my husband - my mother has had 100% of our attention 24/7 for 1.5 years. I've loved my mother for a long time, but this is now getting to be a very horrible existence for me. Her life is near end - mine should still be around. It certainly is for the 5 siblings that don't do squat for their mother. She'd be in a NH if she wasn't in our home.
I never knew she had dementia when she came here. I got her to rise from being a shell of a person and not being able to even support herself sitting up to being able to use a walker from her wheel chair to the bathroom, etc. to feeding herself and to stop shaking and to be able to talk again. But her dementia is not good and she keeps us up all night - I haven't slept since a full night she got here.
I can't let her kill me anymore. Sorry to be a bummer. But I think this whole conversation has put much in perspective and this isn't just about my mother - I and my husband should have a life too - though it is absent at present.
When it is all said and done I know I will miss my mother and I will be glad for what I was able to give her. It's just I'm running out of resources and life.
Respectfully,
LastOne
It is supposed to be disclosed in our state. You hang with Babalou--that's cool.
Respectfully,
LO
To be totally frank, I knew this wasn't my cup of tea on the get-go. I have a 50-60/hr/week job as an operations manager for a major university.
But my family said they would help - of which none of them have.
Also, I didn't know my mom had dementia or that we'd be dealing with a mentally incapacitated person. The physical part is easy compared to the mental part. Though now soiling her pants continually all day is not very fun. And continually washing soiled clothes. She is a lot of work and we never get the heck out of here. We are also on a tether. That is getting a bit tiring and stressful. So I came into this gig unaware and also with NO knowledge as to how to deal or care for this type of person. But have learned. Though the mental part is still getting to me.
I'm sure the NH will have someone sitting next to her all day holding her hand, playing Chinese checkers or other games, and taking her to the bathroom upon her beller night and day. Covering her up and removing blankets as her temperature dictates during the night. Feed her in the middle of the night when the baby bird complains of hunger after she had a homemade dinner of meatloaf, tangy sauce, mashed potatoes, fresh green beans, cucumber salad - all organic, homemade and fresh! Breakfast is freshly grated potatoes for hashbrowns and her organic egg with yolk fully cooked, OJ, milk. Organic apples and fruit for snacks. Make sure she has supplements to benefit her ailing head. Bathe her and wash and set her hair every day. Take her for rides in the country. Bring her to her own doctor who follows the protocol for her needs - vs. standard of care for the elderly. I bet they will do that for no pay like we've been doing all this time. They'll do that and live at the facility 24/7 right next to her and do nothing else and make sure he is okay all the time. Did you say, "dreamer, you're nothing but a dreamer..." But that is the life and care she has at our home - and the state of our life providing care for her.
You keep being the good person you are - that's a good thing.
LO