The Caregiver & Dysfunctional Families: How are you doing?

Hugs Dorianne.

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?

bookluvr - I appreciate you sharing that.

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.

I made it, though! I can stand straight knowing that when dad died, he didn't die with everyone not liking him. At least he knew, towards the last year or 2 of his life some great conversations we had, the shared laughter, his terrible humor or jokes that I've heard over and over... and still faked laugh on all the punch lines. He always got a kick that he 'tricked' me in that joke... forgetting that he's told it to me repeatedly... Sometimes, I let him know that I heard the joke, told the punchline and dramatically rolled my eyes... which got him to laugh.... In the end, I'm glad that at least he knew that not all his kids didn't like him..... I can look at myself in the mirror and my conscience is clear... I always asked myself, "Can I live with my actions if he dies?" .. and the answer is .. Yes... .. I still haven't cried hard for him or his death ... sad....

It's very dangerous to be a caregiver of those who were abused by their parents. The flashbacks do occur. I had to constantly fight on not trying to get even with my bedridden dad. Yes, I fantasized on all the ways to make him suffer. Thank goodness I have such a super sensitive conscience!!! I'm serious. Sometimes the fantasies were very scary. What Cmag said - to try to prolong his pain as long as possible. While he's hurting, to fling back all the terrible deeds he did to us kids.... I even saw red when he actually Denied ever hitting us kids! I wanted so badly to hurt him then. It was so hard to control the anger and to walk away. After that, I learned to never bring up abuse or violence or anything that would trigger me to protest his denials....

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.

How funny to come here at this moment and read about how abuse survivors shouldn't caregive their abusers.

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.

golden, I hope your sinuses improve soon.

Hi, I just want to add one more reason for adult children who were abused should not have direct hands on care of the abusing parent. My wife's therapist said her concern was that she might have a flashback and in anger strike out at her mother when her mother became very sick. That is a very real problem for I remember the night that she got fully in touch with her anger. She knew how she wanted her mother to die and how long it would take. I called 911 and got her some help before she forgot who I was.

dori - sorry you are having such a hard time with your mum. She is declining and with that comes more challenges and care. My mother has been on "comfort care" for a couple of years now. They thought she would die in her sleep, but it hasn't happened.
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.

ABB , you're correct. The doctors and the home care nurses always told my dad that he needed to move both hands and legs daily. Otherwise, his muscles would weaken and then stiffen. So I tried to do as little as possible for dad if he can do it himself. Towards the end, his legs were cramping a lot. I had to implement mandatory limbs exercises after I changed his pamper before bedtime. I had to hold his hands and then his legs to produce movement. He didn't want to move it but I insisted. Afterwards, I massaged his muscles and at first he wanted me to stop because it hurt. I told him that once we get past the pain, his legs would feel so much better. And it did. Towards the end, he was asking me nicely and more frequently to please massage his legs. He was losing muscle and it was cramping frequently from lack of use and movement.

My oldest sister jumped at my dad's every command. I didn't realized how much she did until one day my dad mistakenly thought I would do the same. I came home from work. It was evening. My dad told me to raise the bed up {so he can sit higher.} I looked at the bed's remote control. It wasn't on the bed but dangling off the side railing. I got up and put the remote back on the bed within reach. He looked at it, then me and then had the nerve to tell me to raise it! I looked at him and said he has a hand. Use it. Then walked away. He got angry but he did use the remote. It may seem rude but I didn't believe in babying him. He had basically stopped exercising his limbs. He wanted sis and I to do everything for him. ...

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....

Trying, your post resonated with me. If your dad only wanted a little bit of loving attention, and you were in the right frame of mind to baby him, you *could* wipe his nose as a gesture of kindness. Maybe he was seeking that. I don't know your dad, so I don't know.

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 was just reading the posts about patience. A good thing to think about as I head out to Mom and Dads. My patience is thin right now. I don't feel good and I can feel resentment lurking around the corner. Resentment is a deadly thing for me. It warps my thinking and brings out the worst of my character flaws.

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.

Oh Dori, so sorry your brother wouldn’t come at Christmas. He may regret it, but it’s his conscious to live with. My eldest brother lives in Montana, he didn’t come for our dad’s service in 2003 nor for our mom’s in 2016. He moved in 1977 and hasn’t come out once. It is sad.

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!

bookluvr - I'm sorry you had that experience with your father.

(((((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.

Cmag and book, it was hard when my mom passed because she was so nice to people outside the family. Hearing them say good things about her just saddened me as I wished I knew the person they knew.

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!

No, not taking care of my mother. She turned extremely mean and says that she doesn’t trust anyone. We are no longer on speaking terms. But she still pretends to the outside world all is fine. So sad.

Thank you for sharing bookluvr. I empathize with your experience. I am sorry that your dad treated you and your siblings that way. :(

CMag, about the eulogy.... I was with my sisters as they set up the funeral arrangement with the Catholic church. When the lady asked if anyone was going to give a eulogy, I immediately thought in my head, standing in front facing the audience - in church - .... Well, my dad physically and verbally abused us kids. I remember the time he would knock my brothers to the ground and then kick them hard with his steel toe work shoes while they were on the ground. Or the time he .... " {{{ shuddered }}} Nope! I would have to tell the truth to everyone. I didn't want to lie. So, I didn't want to do the eulogy. None of us kids wanted to do it. Poor priest had to make something up - because my dad hasn't gone to church for over 30 years!

SpiritDancer, almost a majority of the elderly do not want to go to a nursing home. What will determine this ultimately - is you. How far are you willing to take care of her? I'm from a culture where we take care of our parents/elderlies (grandparents, too) at home. However, my dad did look into it for bedridden mom but I think, deep down, our culture prevented him from actually doing it.

How far are you willing to keep her at home and take care of her? Do you have a limit where once she reaches that line, it's time to put her in a facility that can watch her 24/7? Before that time comes, I have read sooooo many people whose parent(s) did Not want to go to a NH (nursing home... Not New Hampshire). They struggled with the thought, then they found ways to get the parent there. Even if it meant tricking them into it. It would be best if you do some searches here and find some stories to read - to give you ideas and a game plan.

Dorianne, I watched my dad at age 68 from kidney and liver failure. He never drank, smoked, etc. But he would not follow his diet. He thought because he was thin he was healthy. Just wouldn’t change. I try to be strict, but it is hard.

cmagnum - I feel great empathy for your funereal experience. It was the same for my grandfather's funeral. We listened to people praising him for his community involvement and role as a community pioneer. Nobody ever talked about how mean he was, how much of a narcissist. Nobody talked about how he beat his wife and children. When he died, my mom unfurled for possibly the first time in her life. I can say, though, that we had a protester at his funeral! A man stood outside with a picket sign that said, "A bad man is burning." I thought it was funny. I was the only one.

Isthisrealyreal - thank you for that. I don't think switching rooms is going to happen. I don't think I want to experience that kind of fight with her! Plus I seriously don't think she is going to be long for this world anyway....which is probably why I feel so guilty about snapping.

Becky - I sort of understood some of that! Lol. I know what you mean about the nutrition. My mom managed to maintain her kidney function enough to keep dialysis at bay for an extra 10 years, just through following the dietician's nutrition program. Once she started dialysis, though, she kind of gave up and started eating whatever she wanted. (She really missed nuts!) Now I can't manage her diet at all. She just won't eat properly. I think that's largely the dementia at play.

Doriane, Patients on dialysis do have checks on BUN and creatinine ratios to determine the effects of dialysis. It may show as a ratio number identified by BUN. Or it may be hidden in a battery of figures that make up the GFR number. The lower the GFR number the more critical it gets. A GFR below 25 you are on dialysis or need to start. Above that you are in various stages of CKD. I am not on dialysis, but I'm headed in that direction. My GFR currently is 29 which is not good. But, I've maintained that number or slightly above two years which at my age is fairly good considering I was diagnosed with CKD in 2001 and borderline for one to three years prior to that. Plus I'm a diabetic which causes additional dietary issues. Even though I cook for my family all the time, I generally do not eat the same things they do. Nutrition is critical for kidney health, but it's not impossible. I can't follow many of the kidney diet recipes because they aren't good for my diabetes. I go to the hospital dietician about every six weeks. I have blood work every four weeks. I don't like my diet, but I stick with it. I treat myself maybe four times a year. I've learned how to combine things and create my own recipes that my registered dietician checks for me. For me, it's strict discipline which isn't fun.

Doriane, no need to feel like crap, your mom is being selfish. Perhaps you can trade rooms with her and then you would be happier hanging out in your suite. I have found the more you let people push and shove the more they push and shove. This is not all about her, you are part of the equation whether it suits her or not.

You do a tremendous job of a tremendously hard job, be more forgiving to yourself🐺

CM - the renal unit seems to track everything in mom's blood work - not just creatinine. I don't find them huffy or anything. (Also I've met with 3 nephrologists and 2 are women, lol.) The nephrologist showed me a bunch of charts with numbers on the computer. I just don't understand them. But they do make adjustments to her weekly blister pack of meds all the time based on blood work. For example vitamin D will appear one week. Then it might be taken out a few weeks later. Magnesium just appeared a few weeks ago. She also has been given a calcium supplement. I don't know the meanings of all these additions and subtractions, but I did manage to ask about the calcium....apparently it binds to the phosphates (or phosporus? I always mix them up) from all the cottage cheese she eats so it can be dialyzed out. So I know they are constantly looking at her blood work. They also adjust the way she's dialyzed based on it. Dialysis itself seems like a constant chemistry experiment!

My GP seems pretty thorough - she's been tracking MY creatinine for years, just in case the kidney disease is genetic! But the deal when she took mom on as a patient is that mom's renal care had to come from the renal unit. (Which is totally fair. She was, at the time, caring for 5500 patients, thanks to our doctor shortage.) I honestly do find that the renal unit here is FAR more thorough and involved in patient care than mom's former renal unit in big, resource-plentiful Vancouver.

MsMadge - thanks, that honestly feels undeserved! I wish I could be nicer and not lose my patience so often.

Mom and I snapped at each other last night. I was trying to cut up some cardboard for the dumpster in the dining room. Mom chose that moment to decide to nap on the couch. (I didn't know she was trying to nap.) This is a constant battle with us - she has a very large and perfectly excellent master SUITE, but she insists on sleeping on the couch half of the 18 - 24 hours she sleeps per day, turning the whole apartment into a sick room. (The kitchen, dining, and living area is open plan.)  And then I can't have ANY bit of life outside the very tiny second bedroom, where I don't even have enough floor space to sit and stretch out my injured leg. (Being "imprisoned" in my room is actually one of my biggest frustrations about staying here.....I offered to get her a couch and a TV for her suite, but that just made her mad.) She shrieked at me, "Stop it, stop it, STOP IT!" I snapped back, "It's 7 PM. Go sleep in your room if you want a quiet nap!" And now I feel like crap for yelling.

Free free to make comments about my experience of my MIL's funeral. My wife is totally exhausted. We are home now! We signed the paperwork related to our old house closing tomorrow and I've contacted the power company about turning the power off. We had a few things to look forward to this week!

Finding comfort through Jesus Christ. By the grace of God and one day at a time🙏🏻 All we can do.

She nephrologist - I do beg her pardon, I plead age and the associated vestigial sexism.

The reason I asked about the blood is that there are markers (protein? markers? Don't quote me) which reveal silent "events." The renal unit will be watching her creatinine closely, I guess? Might be worth asking what else, as long as they're not going to get huffy with you.

I give thanks yet again for our lovely GP. It's so hard to find someone you can really lean on to keep all the threads in hand.

Dori
Kudos for you in all that you've done for your mom

CM - it was a phrase I picked out among the things she (the nephrologist) was describing about metabolic acidosis and metabolic syndrome in general. She was trying to explain how mom was being affected by various things, especially her refusal to eat healthy (or even normal) food. (Mom's diet has been REALLY bad lately and she just throws out the meals food I make.) I don't think the doc is a tunnel-vision person in general. But no, there was no blood work in the ER - I think because they assumed blood work is regularly done in the renal unit, AND because they were racing to check for the infection I THOUGHT mom had and get her to her dialysis appointment, where they could follow up. Hmm. I do know the renal unit does blood work but I don't know how often. Something to check up on.

nature73 - I really need that book.

(((((cmagnum))))) I hope your wife is doing ok.

Well, I talked to the social worker today. It was a good discussion. She is going to talk to the doctor about designating mom "palliative," which she doesn't think will be an issue, because mom isn't going to be cured, ever. Her treatment won't change - nothing will change. But it sounds like it will mean we'll have access to home support services at no cost under provincial health care, plus an increase in home support hours, and no charge for medical equipment we may need as well (like a hospital bed....which frankly we could use now....or if we need a wheelchair, a transfer lift, etc.). And that should mean I can free up funds to get some respite care, or some housecleaning help, or SOMETHING.

Coincidentally the occupational therapist phoned me today - we hadn't talked since mom got her walker, and she was calling to see if the file was to be closed or if we needed anything else. Soooooo I told her about the palliative designation, and we arranged for her to come over next Tuesday, assess mom, and help me figure out what we need in the way of medical or safety equipment.

I was going to phone the community nurse who coordinates home support, to talk about updating mom's care plan, too....but I ran out of steam after all that! (Talking about death with a social worker has that effect on me.) So I'll do that tomorrow.

I told my BFF that I wanted to have a plan in place BEFORE I tell my brother mom's had a downturn....so that it would at least LOOK like I know what I'm doing. She said, "If you have a plan, that means you know what you're doing." Which....I never thought of it that way, lol! Isn't that dumb? I just thought knowing what you're doing meant always knowing the right thing to do or the right answer, or having a certain kind of confidence in your decisions and abilities, I guess. Ha ha ha ha!

It was tough listening to the pastor praise my MIL. I have heard from the twins how abusive she was of them and I saw how enslaved her husband was. My BIL and I have the emotional scars from how she treated us. She didn't like us because we took her girls from her. We also saw how much she loved money and never got enough plus acted poor.

My wife's therapist told her that her mom was a narcissistic with borderline traits. From my reading and experience of her, I think she was a borderline queen/witch as described in the book Understanding the Borderline Mom.

We wife is drai ned. She is ready to go home and sleep for a week.

I'm glad this is over. The witch from the west is dead and cannot hurt any of us anymore. We are free at last. No more visits here for Christmas and Thanksgiving. We will meet with her identical twin sister and husband in a nearby big city for several days.