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.
As for your hubbie, no matter how many warnings and red flags there are out there you just can't see it until it is happening to you, that's an unfortunate reality.
I just had a long discussion with Hubs on the phone about what the future holds for his parents. They are getting to that stage. His Dad is 87, Mom 81. They moved here 3 mths. ago from Saskatoon. They are living in a big house which is totally unmanageable for them. They can't handle the stairs much anymore. Hubs sister, his only sibling who lives here doesn't have a vehicle big enough to transport them anywhere cause she also has two toddlers. So Hubs is constantly chauffeuring them everywhere. Taking them to eat every day, doctors appts. the whole nine yards. They expect to be entertained. Hubs told me just now that he figures they expect to be taken care of by their kids til they die. They were impossible people when they were young so it's the same old story that has been written on here every day.
Why did no one tell us that life would be like this when our parents get old? It seems like that is all we talk about anymore, Hubs and I. His parents refuse to discuss this like reasonable people. Hubs doesn't get along with his siblings. I told him your story is written out on AC in various different ways every single day. What do you think I've been trying to talk to you about? Now, he acts like this is a brand new thing. He thinks his parents will refuse to go to a nursing home when the time comes.
All the discussions about falls you guys were having recently. I told him I lived that with my Mom and eventually you'll live that with your parents. And on and on it goes. When does it end?
Now I congratulate her when she manages to get out of her wheelchair and sit on the toilet - good job!
When she asks if I want her to stand up and stick her butt out so I can wipe her though I say not really
What was strangest for me this evening is that it didn't phase me at all when I saw her on the floor. After going through things a few times with my father and mother, it all seems like old hat. We're lucky that she always seems to land on her bottom somehow, instead of hitting her head or twisting a leg. I dread the fall that will need an ambulance.
You know...we're kind of like family here, and it's hard to see the loved ones our family members have cared for passing on, one after another. Some of our family members here come and go rather quickly, as their need for the help found on this site is brief - others stay long after their loved one has passed, and it's just for that very reason that we're like family. Oh, like any family, we bicker from time to time, and some choose to leave because of it - but some choose to stay and work it out, and the family is stronger for it. That's how it is with a family.
Windy, I hope you'll stay and be part of the family for a long time to come. We're all thinking of you right now, as you're dealing with the overwhelm and "fog" in the mind that comes with the passing of your dear mom. Many of us have been there - some more recent than others - and we know what you're going through. Hang in there, and take it day by day. This is not an easy time, by any measure, but you'll come through it on the other side with wonderful memories.
I hope you're asleep at this late hour
What a beautiful post and what a wonderful daughter you are
We are all thinking of you and hope you are able to rest
Hugs
Ms Madge
You seem to be doing better than I think I would be in your spot. I know you've been expecting this but now it's here. Sounds like mom had as nice of a send off from this world as one could hope for. That's wonderful that she had that much support and comfort.
Please take care of yourself. Get a sleep aid if you need one for a few days. If it helps, post away about your how you're feeling now that your mom has passed. Best of everything with arranging the final details for her. Massive (((((HUGS))))) to you and yours.
Might sound strange, but... I'm really proud of you. You and your mom handled this with love and grace. I know there were lots of little bumps, but in the end, your love for each other and your sense of humor about things is what I'll remember about all the posts about your mom, her placement, the smoking, lol. :) Rest in peace, windy's mom.
Love from Send.
My mom passed away this afternoon. I wanted to hold her hand when she died but mom had other ideas. True to herself to the very end.
A close friend and I spent the whole morning with her. I can't say enough good things about the hospice staff and the AL staff. Mom was going through some rough Cheyne-Stokes breathing and the hospice sent a wonderful massage therapist. She spent an hour and a half massaging mom's neck, head, arms and feet with aromatherapy lotion while soothing music played.
AL staff was there every few minutes, checking vitals, checking for pain, swabbing her mouth and making sure she was comfortable. They also gave huge hugs and words of comfort to reassure me. We all shed tears. Mom was in her AL over three years so we all have grown attached to each other.
Even though my mom has been unable to speak for the past couple of days, I knew she could hear me as she could slightly nod her head. I told her I was leaving to take my friend home, that I loved her and I would be back shortly. She nodded.
I returned a half hour later and thought it strange that no one made eye contact when I signed in. They are always so friendly.
I made my way down the hall to the elevator and someone who works there that mom and I have become very good friends with was sobbing out of control. She grabbed me and told me mom was gone just two minutes ago.
When I got to mom's place on the second floor two others were leaving in tears. The chaplain was there to bless mom. She did not die alone. Just without me there.
And that's okay. She left on her own terms, as always. I spent 45 minutes alone with her body. So weird. I'd stroke her head and expect her eyes to flutter. Nothing. I know, she's no longer there, but my mind is still not in a place to accept that. It's too fresh.
The hospice nurse came to confirm her death. I told her of my wish to be with her and she told me mom chose to do it that way. She asked if I told her I would be right back? I told her, yes I did.
She said this has happened so many times in her experience that it can't be coincidence. Family leaves and people pass on. It's their last gift to us as they don't want us to experience the pain of their last moments.
It gives me comfort. I am so grateful for the support of so many people, not the least, all of you here at AC. Mom and I had our ups and downs over the past 6+ years and you were all so good with advice and a shoulder to lean on virtually. You propped me up with your experienced words, advice and a whole lot of love. You've touched my heart and I thank you so much, each and every one of you.
I will not be a stranger. I care about the journey you all are taking. I will be there for you as you were for me.
Love to all!
Suzie
As far as the urine smell, I never found anything that would eradicate it except a change of linens and mopping the room, etc. Try the charcoal, what do you have to lose? I'll bet it does work... to some extent or another.
Try it, I'd be curious to see if it works. You could get briquets and put them in a little box under the bed, or in a corner?
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.
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.
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.
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.
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.
It's no bother, just a relief to relate to people who have been down this bumpy road.