
Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
Dori, losing your patience is human. Some elderly ( especially those who are narcissistic), make it so hard. I think they see us as still being very young with no responsibilities and endless energy. The truth is most of us are working, some still raising children, most are in their 50’s and older. Don’t beat yourself up because you lose your patience. I hoping you are able to get additional home help, respite.
Hubs and I went to target earlier. Oh boy, he is so sloooowww! Takes every back road turning the trip into a 25 minute drive instead of taking the freeway which would be a 15 minute drive. Talk about not losing patience. I did tell him I only have one day off, lol! I complain but mean it to be funny because I don’t have everyday off like he does.
Anyway. Target has a few new lines they are selling, for those of you on a tighter budget like me, the universal thread clothing is nice and reasonably priced. Not plugging an ad here, lol!
(((((SpiritDancer))))) My mom is also one for pretending everything is fine, or at least better than it really is.
Sharyn - thank you, I hope so too. Still hard not to beat myself up....not meaning to belabor the point! But I have always seen impatience as my biggest character flaw (big part of the reason I didn't have kids), and I haven't been managing it very well, in my own heart and mind. Knowing the regrets I will have down the road. I think this is the life of an anxiety sufferer, lol.
Anyway.
I did try quite a bit harder to be extra patient today! I was "short" with mom a few times getting her shoes and coat on, but I think I did ok. The hardest thing was getting her out of bed. So first I put on the Jukebox Oldies music station and lit some incense, got the fuzzy blanket out of the dryer and put it on the sofa, started the coffee, and laid down beside her and woke her up gently. I said, "I know you're sick. I know you're depressed and some of that is my fault. And I'm going to do better." She was ok at that point. She said she was going to do better too. Then she begged for 10 more minutes, so I said I'd have my shower and come back.
This time there was no way in hell she was getting up! And I guess when I decided I was fully in charge now, I really meant it....after a few minutes of back and forth, I actually took away her comforter to make her get up! And then I said there was coffee made, and she wanted it Right. Now. And I said she had to get up for that, too. I just wouldn't take no for an answer. Ooh, she was furious with me, but she got up.
Her depression is really, really bad. I think she's finally recognized that she's not going to get better. Maybe it's that I'm older and I recognize a depressed person more easily (and maybe she hid it better before), but I'm honestly not sure I've seen her this bad since she quit drinking. I feel it could almost crushed me under its weight if I let it. And I am starting to really recognize how living with mom's depression affected me as a kid. Except I didn't know she had depression then. I just thought she was (apologies for using this word, but it's what I thought at the time) "a drunk."
When I talk to our GP, I am actually going to ask her to up mom's dosage of Zoloft. (Dr. cut it back about a year and a half ago, in case that's what was making mom sleep all the time.) I dunno if that's a great idea, given the shape she's in physically, but I don't have a medical degree, so at least I should talk to her about it.
I did just talk to one of the nephrologists (the locum for the one I talked to on Monday). She wanted to make sure I understood what "palliative" meant - not just extra benefits but also she wouldn't go to ICU if she was in critical condition. They will still treat her for her renal failure, and of course treat her with medications if she has a heart attack or gets pneumonia or anything like that. But she wouldn't be kept on life support. Which....I mean, when my mother was in her right mind, she always said she didn't want that. Now that she's frightened she might have a different perspective, but....the doctor said based on her health, if mom was in the ER today, she would be having the same discussion with me about ICU. She also said "palliative" is based on the doctors' opinion that she likely has less than 6 months to live - it's not an absolute with renal failure, not like a cancer diagnosis or anything, but less than 6 months is definitely a possibility.
Sigh.
I begged her not to let anyone tell mom that. She is depressed enough as it is without having a definitive timeline on her lifespan.
I will have to tell my brother soon. I could really kick his butt from here to Inuvik for not coming for Christmas.
We received about 5 inches of snow early Thursday morning and it is snowing again today. I wish it would snow when I have days off work, haha!
For this visit I will think before I speak. If Mom tries to wind me up I will see her for the broken person she is. I will not jump to serve my parents every demand. Instead I will help as needed and let them do for themselves when they can.
Last week Dad said his nose was running. I got the tissues but he didn't move, he just sat there waiting for me to do it for him. Instead I handed him a tissue. He looked surprised but said nothing and wiped his nose. That may not sound like a big thing but it made me feel less like a resentful servant. I will remember that tonight.
BUT... if he is resorting to letting you do everything because he thinks you will and so why not let you, then remind yourself that every doctor and every nurse EVER will recommend that elders Keep Doing For Themselves for as long as possible! This is for the best!
I know it's a very small issue -- handing a tissue vs wiping a nose. But it's representative of larger issues: why would your dad, a grown man, ever expect anyone (ANYONE) to wipe his dang nose for him! That's ridiculous!
Pick your battles. Try to determine why your parents want things from you. If they are things they can do themselves and should do themselves, then please set your boundaries FIRMLY in place. :-) I'm not saying anything new here, but just offering encouragement. (((hugs)))
I still remember when he first returned home from the stroke, bedridden. At first, he thought I was going to cater to his every demands. Nope, wrong child. I was ruthless in a firm way... Nope, you can feed yourself. You have one good working hand that can use the spoon... Nope, you can do this or that if you really want it.
Once he realized I wasn't going to do everything for him, he found ways to do it. I was amazed at what he could do with one working hand and his legs. So with the bed remote incident, I realized he was backsliding because sis was doing everything for him. He just mistakenly thought that I was going to do it, too. Nope, wrong child....
Dr Pauline Boss recommends against an abused child dong hands on caregiving as an adult because of the further emotional stress and flashbacks. I know I have them even though I care give at a distance. That being said, I know you are committed to caring for your mum till the end. Please get as much help as you can. This may be harder and last longer than you think, and take more of a toll on you.
trying -so good to see you posting again. I have been wondering how you are, Good idea to encourage dad to do as much for himself as possible.
I am really behind here - sinuses giving me pain, which is tiring, though it seems that the infection has abated.
I read that 2 hours of silence a day causes mice to grow more neurons on their hippocampi - an area involved with memory and learning amongst other things. I figure if a mouse can do it, so can I (Not very scientific, I know. Hopefully human studies will follow), so I have had the TV off and computer sounds muted and I love it. Give me silence and a large mug of black oolong tea and I am set for the day.
Have a good one everyone.
I made it 35.5 hours of being "perfect." It helps that she sleeps a lot. Then I made her the special Ensure milkshake, and she got flippin' NASTY over the whole business. I didn't even do anything! Here I am feeling sorry for her....and she's really such a jerk! A mean and nasty, self-centred jerk! God, I can't even...
I even decided to stay with her this weekend, after last weekend proved she can't be alone overnight. But guess where I am....I went for a drive to calm down and came home. Writing this on my phone. The last thing I said was, "Don't sleep on the couch. I'm tired of cleaning your sh** off it." Of which I am kind of ashamed, but kind of not.
You guys are right, I certainly don't know how much longer I can do this. I don't think I would hit her or hurt her. I've never hit anyone in my life even when I've REALLY wanted to. I am more worried about giving myself a heart attack or something, honestly. And then I will die because she can't even dial a phone anymore.
Yes, I eventually sought therapy. Can't believe them and my social worker all believed in me. I wouldn't hurt the parents. I wouldn't kill myself. It's just the frustration of caregiving and not having family support, etc... They had more faith in me than I had in me.
I appreciate everyone's thoughts on this, and the issue does concern me when I see others raise it. I have never thought about really causing mom harm....I mean, there's probably been two or three occasions when she is being obstinate and I WANT to slap her, or take her over my knee like a child! But they are pretty fleeting thoughts and I can't see myself following through. I never thought about what mom did as abuse. I thought of it as neglect, for sure! But she never, ever hit me, except once when I was 13 or 14, and she slapped me across the arm....and to be fair, I kinda deserved it. (We were arguing and I called her a f****** b****.) Was it emotional abuse? That's probably something I'll be working out for years to come.
But now that all this stuff is coming up....yeah, I dunno. It's the first time I am mentally confronting the way I've previously interpreted my childhood. I am very anti-violence - and I suppose it's a good thing that I have a lot of anti-violence training from my time in women's services. But I AM frustrated, and I DO think it's entirely fair to question and check me on that.
Anyway. Of course I came back to mom's. I can't leave her until I have a respite worker in place. Plus I didn't take the cats with me. I found her leaning on a wall....heaven knows how long she'd been standing there, trying to get to her room. She said "ten minutes" but I doubt she has a clue. I wish she'd use her walker, but she either doesn't like it or doesn't remember. So I got her on the walker seat and wheeled her to her room. She didn't like me getting her into the chair. Then she couldn't get into bed on her own, so I slid my arm under her knees and lifted her onto the bed. I can't even do that right, apparently. She just berates me no matter how gentle I am. I guess she'd rather I leave her to fall on the floor all over the apartment.
She's probably really going to turn into a screamer once I have to bring a wheelchair and a transfer lift in here, if it comes to that. If I don't give up first.
It's a good thing I've already had my cry tonight.
She doesn't remember the walker. Actually - her brain doesn't even get as far as the remembering part. Doesn't enter her head to use it, is more like it.
How are you doing on the getting more people on board front?
Thankfully, my dad had a Senior Home Companion who saw the bruise, my dad tattled on me, and it was a chance to talk about it and realize that the Sr Home Companion had sympathy for me, my dad wasn't mad at me for hitting him, he was his same horrible, ornery self for the most part... though obviously I was in the wrong, and I knew it. I made a plan how to escape if the situation came up again. See, I had to downsize from the old larger SUV vehicle to a little coupe, and that was the car I took my dad to appointments in. If we started arguing, there was no place to get away from him. Looking back, the 2 bad fights we had were on days of his surgeries because I got no sleep, he would never comply with pre op instructions, and I was a grouch monster and in no mood for any attitude from him. I decided that if the situation ever came up again, I would pull the car over, stop and get out until I could walk it off. If it took all day, I didn't care. I couldn't stand that my dad would push my buttons, that I would allow that, and then I felt so disgusted with myself.
It's no joke, caregiving to parents/family of longtime dysfunctional situations. Lawd, there was a time when I hated my father so much. I couldn't stand to be in same house with him, smell his stink, hear him putzing around, smelling up the house because he refused to change Depends regularly enough, or shower, or let me wash his clothes and sheets. I don't know how I didn't just murder him, having to live that way and being sick and run down myself all the time.
ANYWAY! I am out of there, things are much better, but... caregiving took me down a very dark road. I don't think I'll ever contemplate where to hide a body ever again. I knew as long as I didn't make the actual plan to kill him or myself, then I wasn't going to do it. But fantasizing about him being gone... that was a regular thought.
Book, I cannot imagine that I will cry for my father's death. I just can't see it happening. I did grieve for the father-daughter relationship I'll never have many years ago, when I was college age and in my mid twenties. Then I just went through so much grief, anger, resentment, illness during caregiving that I sometimes think that I won't even attend any funeral services for him. It's enough, already, a lifetime of him hurting me. It may never have been his intention to do this, but that doesn't change that it did happen. I'm tired of being the bigger person that protects him, does all the right things, while he does nothing. I DON'T CARE IF HE'S SPECIAL NEEDS. He's also unkind, ungrateful, and sexually abusive of me, so... What a mess he makes of my feelings. All my self esteem goes out the window when I interact with him. Hard to explain. I almost feel physically ill to talk to him or even see him now at holidays.
At present time, I'm struggling with how best to have any relationship with him going forward. It would be "good of me" if I would call him 1x a month, to check on him and interact with him on a basic level. It wouldn't take that much for me to do that. I also dread it and don't want to do it. But. Time for me to grow up. The worst is over. Even though I'll never get past my instinctive recoil from him, I can go through the motions on a 5 minute phone call once a month, just so that my conscience remains clean in all of this.
I'm not feeling sorry for myself, I don't think so, but I do wonder what it would be like to have mostly loving parents. I get it everyone is flawed and "it could be worse." I know some others here will never know loving relationships with one or both of your parents, too.
Ayyy. What a topic. It's 4:30am. I was feeling very bad yesterday, got in bed early and was in and out of bad sleep for a few hours. I think high cortisol remains an issue for me, based on bad sleep problems that come and go. I decided that I had to start an exercise regimen as a first step to fixing some health/stress issues, so I hired a trainer. She/we start on Monday. I'm hoping getting back into an exercise routine will be enough to get some improvement in sleep and some other issues. If not, I'll beg my new doc for sleep study in 3 months at my follow up. I just need to sleep. Every night. And not wake up because I can't breathe/choke. Not wake up, jerk awake because, I'm guessing, cortisol is too high and I can't relax into a deep sleep. Nightmares. Sweats. I think the sweat is just because it's TOO HOT in my apartment because it's freezing temps outside and I have non-adjustable radiant heat. I cracked window tonight and it does help, just need to remember to do it more often.
But hey! I like my new mattress! Mostly, I like it! :-D Gallows humor is keeping me laughing... ;-)
Thanks for letting me vent, dump all of that here. I'm doing ok. I AM DOING FINE. There are a couple of things that still flare up and really knock me down for a day or two. This sleep issue is probably the worst. It's so unsettling to have nightmares and not sleep, fall asleep and wake up again and again and again.
I put everything I had into mom and L. Other family members that made it so darn difficult for me financially and especially emotionally, especially emotionally. Oh did I say that already? I was all emoted out, still am over those very stressful four years. There is absolutely nothing left to feel. In that way I guess I can safely diagnose myself as not being codependent.
I am astonished whenever I read on here that someone has lost a loved one and is now in a state of what seems like constant grief sometimes for years. I don't understand that at all and for brief moments wonder what is wrong with me. I tell myself that my grief (or lack there of) is mine and mine alone, theirs is theirs. I can't change it, neither can they, or they would wouldn't they? Maybe not, maybe that is the only way for them.
So often when our loved ones pass, they have become so very sick. It was time for them to be released from their life and this world. The illness is not only completely debilitating for them but stressful, sad and nearly impossible for those that love them.
Sometimes it is just time and I am happy that mom and L are gone. Sometimes I talk to mom and wonder if she is looking down on me and proud of how I have moved on from caregiving. I think she does and I like to think so.
((Hugs)), Glad. I used to talk to my grandma after she passed and take comfort in feeling like she was ok with how everything went down. You grieve how you grieve. But... I was aware that I probably wouldn't grieve my father's death nearly 20 years ago. This is not a new thought for me. And the caregiving years just got me so much closer to a man that I should've kept a nice, safe distance from but I wasn't wise enough to know that then. My dad's not evil but he does cause me a great deal of chaos inside. How could I grieve his death...? It will be a relief for me, I'm afraid to think so, but probably. I grieved a great deal for my rescue mix I had to give back after 6 months because she wouldn't stop nipping at my dad. I just know they put her to sleep because she couldn't be rehabilitated and I feel so sad about that. I miss the dog I had for 6 months, so I can only imagine your heartache over Macy's death.
CW, thanks for sharing that. I know we never mean to do these things and we're only human. When you're taking care of someone all the time, day in and day out, no breaks, just you and them, and they cannot take care of themselves, and they are demanding, and there is no joy in it... It's just so very draining and so very stressful at times.
Dori, when time comes for you to hand off your mom's care to others, I think you'll know. Don't run yourself too much into the ground or you may do something you regret... but it won't be a huge thing, just maybe something you'll have some regrets about, but you're only human... and then you'll know: it's time for someone else to do the care. Make sense? You're doing what you can, your good effort is good enough, hang in there and keep sharing/venting. You can't predict what is coming down the road, I don't think, just have to keep stepping.
I'm not sure it's easy to differentiate continuously high stress levels for other reasons and PTSD.
I am sure the exercise will help. Even if not with the sleep, how can it not be a good thing?
I also read encouraging things about Imagery Rehearsal Therapy. Next time you're speaking to a qualified practitioner, hem-hem, maybe discuss your sleep patterns and ask about that?
Ali and Book- Thank you for your words. Dad has expected people to wait on him his whole life. He is a nice man but pampered beyond belief. His mother and my Mom both catered to him. My Mom was seething and resentful inside, 24/7, and she was viscous to Dad but she still waited on him. I do lots of little affectionate things for Dad but I draw the line at bodily excretions. He is able to deal with his own drippy nose :)
CMag - I can see why they recommend against the abused caring for their elder abuser. I am with Dori on this, I would never hurt my parents, it's just not my go to reaction but if I don't limit my exposure to them I know I will suffer mental and physical problems. Just one shift a week and it often takes me the whole next day to decompress. I become jumpy and fearful. After a really bad visit I have panic attacks. It's mostly Mom who triggers me but in a way Dad does too. I will never be their primary caregiver. Sis is using their money to pay for in home care so they are well cared for. They have enough funds to cover about two more years. Sis is hiring at low wages under the table which I am not happy about but she is conservator and will not listen to my concerns over this. Anyway when the money runs out they will go into a nursing home.
Ali - you're a better man than me if you can still talk to someone who committed child sexual abuse. That's one of my few unforgivables in this world, of any human being. One of the few non-liberal views I hold is that people who sexually abuse children should be consigned to a desert island with nothing more than a loin cloth and a spear. (((((hugs))))) I think I may have already said some things I will regret down the road. But who's to know what is to come.
Ali, what a shame our parents can push us to such extremes. I know I wanted to slap my mom a few times but I knew it would do no good because she was the type who would have slapped back and called the police claiming elder abuse. She was threatening to do so re other issues but she knew she could not prove it, because there was none. More like her being abusive to my sis and me. No recourse for us either. Such a cycle, so glad it is over.
Back to school tomorrow. I dread the long hours but it was a nice break. Hoping to find time to post on a regular basis again.