This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Hang in there and update us when you can (no rush, of course). But if you feel the need to talk, we're here. We know that numb feeling.
Your poor mother. But she might have been kinder to keep that thought to herself, perhaps.
Today is going to be difficult. We leave in a couple of hours to clean dad's AL place out. Thankfully a lot of the downsizing was done when he moved to a one room suite. Haven't seen one of my SIL's since last summer and she flew in this morning. She is the youngest of six and very crushed by her dad's death. Hubs is doing okay. It's a relief in many ways, sad to say. He has given up every Tuesday evening to visit his parents for 11 years, since his mom came down with Lewy Body dementia.
I'm feeling pretty lousy. I'm sure it's anticipatory grief for my own mother.
Thanks again friends for your kind thoughts. It means so much.
I'm a sh!t. I do wonder about how all of you are doing. I do understand about how real life intervenes.
Been busy with FIL funeral plans and my mom going down.
It's all consuming stuff.
Five SIL's are a coven doomed to take us all down. Just kidding. They loved their dad and are making his funeral a production to rival any Broadway premiere.
I love them, yet I can't stand them. I don't like anyone to tell me how I should grieve. Demanding our son should write something for the program when he's in the middle of a big college paper. They requested 30 people to write their memories. A little much?
Too me, life is for the living, not a huge six page funeral program.
Gah!
Death is not swanky or a social program or who showed up or fancy appetizers at a venerated location. I understand how they want to honor their father. I respect their wishes for him.
My husband and I are a different sort. He designed the funeral program at their insistence. He is very talented that way.
The funeral is Tuesday.
My mother is in a very bad way. She might die any day now. I hate this.
Morphine at 7.5 isn't touching her pain along with gabapentin 100 mg.
Thoughts?
Ok - one thought: "she might die any day now." What emotional chaos that is for you. Give yourself permission to do whatever it is that you need to do to keep yourself afloat right now. She is in the hands of the ebb-flow of Life, the ebb part n all... :-/ You can do nothing more and she has expert care. Allow yourself as much mental and emotional peace, acceptance, about the process as you can find. Meditate, perhaps? Please take care. (((((hugs)))))
You do whatever you feel is right and works for you. Lock yourself in the bedroom and let the planning take place without your participation if that is what you want to do. There is not just one right way.
I am sure the planning for L's memorial when he passed in October was very similar with the twisted sisters and L's daughter. I was very happy to be 450 miles away. It must have take months to plan it as the service wasn't until January. It made them feel better, I wanted no part of it.
Windy you need to insist that Mom receives proper pain relief for her comfort and your peace of mind.
So sorry about the drama around FIL's death. It is too much to deal with. Let the SILs do their thing. If son wants to write the eulogy let him but other wise say No, it is not necessary. It can be very short like "My grandpa was a great man I learned so much from his example. I especially remember the Christmas he surprised us by doing..................."
My sister in law wrote a beautiful one for her mother in which she mentioned the family trips to the seaside which her mother hated because she was afraid of water, but she did it with a lot of humorous anecdotes.
She also wrote one for our FIL's funeral which I did not know at the time as her husband delivered it. Very touching she is a good SIL
Take care of Mom right now she needs you the most and she is still alive.
The only advice I could give is even though it is tough, try to be present in the moment. It's so easy to want to fill your head with anything but what is actually happening but my biggest regret when Mom was dying and all through her service and so on was that I was trying so hard not to feel anything that I may have missed a moment here and there that would have been meaningful for my future without her.
But, anyhow, my thoughts and prayers are with you Windy.
Thank you for your words of wisdom and encouragement. They mean so much to me. It's incredible to come home and click on this site and see your kind words. ((Hugs)) to each and every one of you!
My husband and I brought lunch in to mom today - yummy beef enchiladas with a guacamole salad - something she always enjoyed. Not much going on in the eating department, sad to say. I understand with her condition.
She had an adverse reaction to the gabapentin late yesterday. Her lips swelled up, but thankfully no breathing problems or other effects. Now she is on benadryl to counteract that med which makes her VERY sleepy. The swelling did go down a bit though. *sigh*
Her pain is accelerating and you are right Veronica. Her morphine dose needs to be upped, like right now! I'm a strong believer in hospice and in pain control. I watched my dad die of brain cancer and hospice kept him comfortable to the end. It's difficult to see my mom in so much pain.
Since she has no diagnosis of record from her refusal to see docs, it's difficult to pinpoint. I definitely think wherever the cancer started, it is in the bone mets stage. I will insist hospice up her morphine. I suspect they are reluctant to do so given her low weight of 72 pounds. I know it will not be the morphine that kills her. It is the cancer that is killing her. My goodness, the mass that grows on her back is huge. I can only imagine what is going on inside her body. When we left today, she was bent over with her head resting on her lap. I tried to prop a pillow up on her chest. She refused. Oh mom. :(
SIL called a short while ago. Hubs told her of my mom's bad shape. She didn't care. Asked that I bring an appetizer for a crowd AFTER the 4 hour funeralpalooza on Tuesday as she decided to host a gathering. I'm ready to shove a bag of Tostitos up her backside complete with habanero cheese dip. Feel the burn you...whatever.
Yeah. It's enough, windy. You're doing great, though! You're doing the absolute best you can by your mom. No one could ask more from you. And of course you'll take the appetizer to FIL's uberwake, just don't spend your own precious time making it. If nothing special was asked for, then... I know you won't be rude about it (as much as the Tostitos is a fun dream), so then whatever, just take something that's ready-made. You have more important things going on. There's nothing you can do about someone who has already passed... not trying to say your FIL isn't important to you because he obviously is, but your mom is going to be on your mind 24/7 until she passes. I pray she can be pain free. The timing is difficult. (((((hugs)))))
Contacting hospice on a Sunday evening is a nightmare. Woman put me on hold and then I got cut off. Next call, voicemail. I am angry right now. I am sure my mom is sleeping but when she wakes up it will be to bad pain. I am trying to avoid that by being proactive.
I posted earlier (eight hours ago!) to her main provider that the gabapentin was allergic.
I thoroughly checked out hospice providers. I'm ticked off right now.
You're a saint and I hope you can get ahold of someone tonight to help mom
God bless
Contacting hospice on a Sunday evening is a nightmare. Woman put me on hold and then I got cut off. Next call, voicemail. I am angry right now. I am sure my mom is sleeping but when she wakes up it will be to bad pain. I am trying to avoid that by being proactive.
I posted earlier (eight hours ago!) to her main provider that the gabapentin was allergic.
I thoroughly checked out hospice providers. I'm ticked off right now.
Your story of your S I L rings familiar. When my brother died in 2003 my sister was in such a todo about having the lunch at her place afterward.
At one point she got out her camera to start taking shots of everyone. Huh? What were we supposed to do, smile and say cheese? What would the caption under the picture say? Here we are at brother's wake. Fortunately her husband caught this before I said anything cause I could see it would have turned into a big tiff if it had come from me. Maybe it's just me but I just think taking pictures at a sad occasion is kind of insensitive. But that's just me To each his own.
When Mom was dying, she just loved strutting around, flirting with the paramedics and the doctors. I can think of something even hotter than habanero sauce I would have liked to stuff up her craw.
It's no bother, just a relief to relate to people who have been down this bumpy road.
I'm known as the mean one among my family. I usually am quiet and don't rock the boat until they push me too far and then I snap. And my siblings could never understand that I can be so 'mean' {I call it *discipline*} to their kids and grandkids but they still come to me and ask 'Aunty, can you play with me?'
Yesterday, while waiting in line outside the restaurant, fave niece's hyper-active son was playing with his small flat rubbery scorpion. I took the scorpion and placed it on his shoulder and told him not to move. I then pretended to look up, gasped, mimicked a low screaming with wides eyes and mouth, pointed to his shoulder and then pretended to be a sissy but brave female and hit it off him. His eyes widened, started giggling... and immediately it was my turn to have a bug on my shoulder while he manly knocked it off my shoulder as I pretended to be screaming and shaking with fear. The whole time, he's giggling.
This morning at 4:00, I read a message from my ex-SIL. We used to be great friends before they left island and made the mainland their permanent residence. Before they left, I used to be the babysitter for her and my older brother's 4 kids. I played with them, taught them games that we grew up with and read them stories. I would go to the library and read each book until I found 6 (max allowed), borrowed it and had 2 weeks to read it to them. I was also into the Bible. I bought a Bible stories book and would 'read' {more like use my own words} one chapter at a time.... SIL asked her young granddaughter if she knows about Adam and Eve. She doesn't know about them or even what's a Bible. SIL told her granddaughter that I told Bible stories to her mother and her uncles. Her granddaughter now wants a Bible story book and has been asking her daily if she asked Aunty K for one. Brought back memories of my knowing when bro with his wife and 4 young kids bought a one way ticket to the Mainland that they were never coming back to live here. I can't respond yet to ExSIL. Bad timing.... Gee whiz, can't SIL go online and look for a Bible story book? Now I have a very young niece I've never met eagerly waiting for me to send her one... unfortunately, I've been avoiding my religion for 20 years and don't want to go there to get a book which will draw attention to me..... brainstorming.
Children's Bible In 365 Stories Hardcover by Mary Batchelor
This one has been around forever and still gets good reviews, people say the stories are short enough for younger kids but also written well enough to engage older ones. Kind of pricey though.
Oldest sis.... sounds so normal. The minute she walks into her room, she starts talking angrily to no one. I got up at 4:00 this morning. Her bedroom light is on, music is playing... and sis is muttering.
Dad is now into 'hands in his front' pamper. I just smelled something... it's that smell someone has when they've been touching themselves down there. Sure enough, I sit up and dad's hand is inside.
Just a little update. But first, is it true that charcoal can absorb odors? The urine smell in my mom's room is becoming a bit much. The little Febreeze stick on things are not doing the job sadly. The caregivers are good at changing things and there's nothing wet around. I think it's just the catheter bag and high temps that my mom requires.
Hubs and I wheeled her outside for an hour today. She really enjoyed that, especially to hear a robin singing.
She is in and out of it as far as cognition. I just don't understand how she keeps hanging on at 70 pounds! I gave her permission to leave us, told her we would be okay, etc.
She's choking on fluids now, can barely get them cleared with a weak cough. It's horrible seeing her in so much misery. She's getting very agitated, constantly rearranging kleenex and napkins. She says she has to arrange things 'just right'. Over and over and over.
I asked the AL nurse to talk to hospice about Ativan. Her anxiety is over the top bad. There is no quality of life left in her state. Moving a kleenex box two inches left and then right will do no good. It upsets her that she can't get the box placed in the right spot. It upsets me to move the kleenex around for 15 minutes to just end in tears on her part.
My husband, patient as he is, said we had to leave after a three hour visit. The man is a saint. He could tell from the 'help me' look in my eyes that I needed to leave.
I know mom fell asleep the second after we left. She was fighting sleep when we were outside.
Her BP is 83/40 now. Gosh! I just want her to go to heaven and be with my dad and my grandma and grandpa. It's such a helpless feeling as a daughter who loves her. We've had so many disagreements over her care. The guilt feelings creep in. I hate that.
I know I've done my best, despite those guilt creepies. It's part of the human condition. I'm one of those people that likes to solve things to make other people's lives better. I live to help others.
It is who I am.
I am doing reasonably well compared to her!
My biggest issue is the feeling I sometimes get that this is a death watch. I can see Mom getting a little worse each month, Less energy, awake less, connected less. I no longer believe in her recovery, and I just cannot see that she has any quality of life left. That leaves me feeling depressed.