The Caregiver & Dysfunctional Families: How are you doing?

Sandwich when I had my hip replaced my room mate was a lady of similar age who had had her knee replaced On day three when the catheter was removed and we had to walk to the bathroom - a few step with a walker and assistance she begged the nurses to leave the catheter in. No go out it came. On the first three days a female aide did the bathing because we needed a lot of help. On day 4 which was going home day a good looking white younge former marine came in with the wash bowl. We were suposed to be semi independent by then so I did the front and he the back and we chatted while this was going on. Then he moved on to the room mate and she moved faster than I had seen her since we got there and fled to the bathroom and firmly locked the door. We did laugh about that. She also told me I had "one fine looking husband"

sadly Welcome. Very frustrating indeed, and hurtful. You are not alone. I don't know why people believe a demented person either, but it happens. I have been accused by my sister, and others here have been too, when we are just doing what we can to help. ((((((hugs)))) Come back and vent.

Alison - it does matter what dads wants - definitely.

sandwich - those ugly sisters!!!! So glad your mum is in a good place. Lol about what you said to your mum!!! Mother is pretty prejudiced too. I met a fine young man from the Caribbean, a law student, when I was at university and mother nixed it totally. Then I met a young Greek engineering student and she nixed that too, but we stayed in touch. I suppose the rural south would do that to a person, but some would learn better. Mother told me when she grew up there was no prejudice in Norway. I said to her, "Mother, when you grew up, there were no black people in Norway."

bunny - I am glad you are grieving and feeling anger. I think it is part of the process of healing from this kind of thing. That was horrible about your 25th anniversary present. I pray you see yourself as God sees you. I have had to go through a similar process and still work on those feelings some times. Renew your mind! I know those behaviours by a parent hurt.(((((hugs)))))

veronica LOL -that's funny. Thanks for the laugh.

Well, update on the sharing of information. Told my niece I was checking out the regulations about information sharing and that was received well. I talked with the SW this morning, she spoke to mother and got permission from mother for her (SW) to talk with my sis on the phone and share that mother was having some difficulties, and didn't want visitors and wanted to remain out of contact. So I sent my niece the SW's phone number. I cannot share any more than she can. I also found an information and privacy act that states if the person does not want information shared than I can't share, and even if am allowed, there is a guideline as to what info and how much to share. If relates to freedom of privacy which has been/is been a big thing here and I am very aware of from working at the college. For example, we could not give any info to a parent unless a student had signed something permitting it. I am talking about late teen and young adult students.

So, hopefully, that will calm things down for a while. I suspect they want a blow by blow description of events, but they aren't going to get it from me.

A lady, who used to shop for mother has visited her, called my sister and is basically soliciting business trying to take mother shopping. If mother wants to do this and is willing to pay, I have no problem with it, but mother has to want it or she wouldn't even go. The SW has spoken to this lady and said to me if this happens we need a detailed account of costs ahead of time. I agree. I finally got the lady who wanted info about mothers lease at her ALF, and she is very friendly and sneaks the questions in here and there. I know the technique. I told her I couldn't discuss much. She shared some sad things about her visits to mother, and said some days she is fine and others not. I was friendly, and shared a little in general but not much. I find her nosy and she reminds me of my sister.

According to some things the social worker, and also the nosy friend, mentioned, mother's disease is progressing. Her delusions are "expanding". I know it is inevitable. It is sad.

Tomorrow evening, dental surgery/bone graft behind my front teeth. I will be looking for a burka to hide my duck lip. Hopefully a bag of frozen peas applied liberally will keep the swelling and bruising down.

Have a good evening, everyone and do something good for you.

Emjo good luck with your surgery tomorrow. Make sure you have plenty of ice lined up to keep on your face all night, even if you get no sleep. The first night is the most important to keep the swelling down. let us know how you are doing. even if you can't talk at least you can type.

Sandwich, do they have purple people eaters in that nursing home too? Hmm...

Sandwich and Emjo, my mom too very prejudice! Tried to throw a black caregiver out of the house two years ago because she thought she was her to burglarize the house. When Mom was young she spent some time in Chattanooga, separate water fountains, seats at the back of the bus etc... And Mom and grandma full blood Norwegian, Emjo maybe it is something about our Norwegian culture or something? I too am full blood Norwegian great grandparents came to this country originally. But now the blood is crazy mixed up with my children as well as sibs children.

Another note on Teepa yesterday. She talked about the problem with vision, memory and walking. The reason they have such hunched over posture and shuffle is because of the vision changes that occur in those with dementia. Then we give them a walker that they use too far in front of them which causes even more hunched over walking. Then they forget to use it anyway which can result in a fall because they are walking more hunched over. The solution is to have somebody walk next to them with arm around waist, holding other hand instead, though that would be very hard to do. Not a very good description of the walk, but I'm sure it is on one of her YouTube videos.

Book, I don't know if they taped the presentation yesterday, but on the teepasnow website they have DVD's available as well as CD's with music collections for those with Alzheimer's.

And Emjo, my grandma nixed a relationship my mother had with a very sweet and kind Polish boy because he wasn't Norwegian. Well, Mom used to say "grandma is probably rolling over in her grave now" because she married that Polish boy 8 years ago on Mom's 80th birthday! They chose my mom's birthday because mom knew she would remember their anniversary. Wrong again mom, now you many times don't remember you are married, much less to who. Poor Polish guy!

POA is not only for care, but to manage any money that individual has, pay the bills for them when they can no longer do so. It must be someone the individual with dementia fully trusts, because relatives can take advantage of the situation if they only have their own interests in mind. A good elder care attorney will tell you to make a trust fund so that individual can qualify for Medicaid in a few years- most of the time it's a 5 yr look back. Once the money is gone, assisted living will "kick them to the curb" You never know what their future needs will be medically/otherwise so it's wise to plan as much as possible.

Ugh! - Glad, the walker too far in front of them - I'm considering getting one of those elastic stretchers and tying mother's to her like a crinoline, this drives me so mad. So frustrating! She is gradually, gradually getting better, but as soon as she needs to negotiate a corner or a table she's waving it round in front of her like some demented water diviner! - sends me up the wall.

Locascio, you are quite right; I'm not disagreeing with any of the points you made. I'd just add that, unfortunately, someone the individual with dementia fully trusts (and quite possibly loves, too) will not necessarily turn out to be worthy of that trust. Creating a POA, which we should all do while we're fully compos mentis, is something that needs to be done with real circumspection, thinking through all the possibilities. Our relatives are only human, and things have a habit of going awry.

CM have you ever had to use a walker? I have and you put it too far out to save having to keep picking the darn thing up. Does Mum have wheels or sliders on hers?
I only had to use it for a few weeks after hip and knee replacements but I can tell you you can't carry a cup of tea at the same time. I also have severe OA in my back and very little exercise it starts to hurt and I can't stand up straight hence the leaning over. Another thing that cauzes falls in the elderly is bifocal glasses. Because they (or should I say we) are walking bent they look through the lower part of the glasses which distorts what they are seeing. Very bad on stairs in particular. Better to have seperate reading glasses and if they have cateracts removed opt for the clear ones not bifocals then they use reading glasses as well.
Boy it's h*ll getting old. Hope everyone is having a good day. CM would she be better with a quad cane?

I haven't had to, Veronica, but boy have I demonstrated a lot! I'm only half joking about the elastics. If the frame is held *gently* (I'm not being cruel, here, honest!) around her, it tips onto its wheels quite naturally at the front and rolls easily, but still has the rubber stoppers at the back in case she has a little wobble. We had the height adjusted very carefully for her, and her upper body strength (now that her wrist is more or less back to normal, or as good as it's going to get) is Not Bad for a lady her age. BP SIL, who as we know knows everything, was whittering on about 4WD walkers - definite no-no, it would outrun her and be a disaster. But with a quad cane, knowing mother, she'd lose patience in a microsecond and it would be pushed aside.

I agree about the carrying and it is an issue. She's banned from moving anything hot - no real need, anyway - but my goodness by the time she's gathered her tissues, glasses, book, newspaper and had a go at tucking the cat under one arm she's quite festooned enough. She is the world's ultimate clutter magnet. There are walkers with little trays on, of course, and ones with perching seats too. What I haven't found is one with a 'dead man's handle' which is what I really want, because I don't think she'd be co-ordinated enough to use the brakes on a rollator if it were going too fast for her. The search goes on.

She won't wear glasses unless she's reading or watching TV. Used to have a separate pair for driving, but they're safely in the glove box. We're back to the optician on Friday, see what he makes of her bionic eye (it sort of glitters, where the new lens is: has anyone else ever noticed that?).

Veronica do you find your back feels better after a stretch, or is it painful to do that? Mother's PT gave her some exercises (she also has slight scoliosis where her hip replacement leg is longer than her normal leg) and I'm not sure whether to nag her about them or not.

Hellooo,
Well, company is gone, while it was nice to have them here (cousin, son of cousin and great grandson) my MIL said she was glad they were gone, too much commotion and she couldn't hear anyone anyway which is frustrating for her. Doctor looked at her ears and said they looked fine, it was probably just her 'maturity', which was nice of him to put that way. FIL didn't know who any of them were, but seemed happier the past couple of days.

Took FIL to a doctor last Friday, where he was diagnosed, again, with severe dementia. This doctor prescribed a home health nurse, yay. So someone will come in to see about him once a week, as well as a PT and a speech therapist, which they said was helpful for dementia patients. I have never heard of that. But okay. At least he will get some care. I tried to get this through the VA with no results. He might not accept it, but I am sure the nurses are used to that and will get around him. Most days he doesn't know where he is or even who he is. Yesterday he told me that he would miss me when he went home. That doesn't seem to change, the idea of going home. Someone around here wrote that sometimes when people say 'going home' they mean going to heaven or wherever. Not sure if that is the case here.

FIL fell against the bathroom doorframe last night, and comes out bleeding all over the place from a slice on his arm. Of course he hit the metal piece where the doorknob goes in. Argh. And he is skin and bones. I patched him up as best I could and will look at him later tonight. When the relatives were here, we had a drama every night. First MIL choked when she was trying to eat too big a bite, and the cousin was pounding her on the back. Then MIL was brushing her teeth, and spit out blood, so of course everyone was running around in a panic. She probably had some gum bleeding. Then last night FIL bleeding all over. I think this family is just full of drama. I wasn't there for the first two things, but the cousin and MIL reported to me. Sigh. I would like it if everyone would chill the heck out. I tend not to believe drama filled people, seems like a lot gets exaggerated, MIL probably wasn't at death's door either time, but to hear it told...aaaahhh.

I watched one of the Teepa Snow videos, wow, nice that someone is addressing all this in a practical way. Also saw some CD's for sleep, and sounds like Teepa Snow has some CDs that help dementia patients relax. I may have to get them all.

Thanks for listening,
Christine

Hope everyone is having a good enough day!
I am totally happy with good enough. Anything that is less than full-on interactive kabuki theater with hissy fits is a good enough day for me.

I found some old files on my computer that are letters I had written to mom's docs back in 2010, 2011, & 2012. All the same symptoms. Hallucinations, self-neglect, depression, high anxiety, rages, moods, you name it. You know what - I never got one acknowledgement from any of those doctors except one. He called me back to say that it's all my fault for moving so far away. "Oh how very dare you!" I should have called him what I thought - a misogynistic old fart who is so far out of touch with the times that he can't see straight. Yeah, no help at all there. I think mom's mental illness got in the way of a lot since she was so infernally difficult and demanding. Nobody wanted her as a friend or patient.
Ignoring me meant they didn't have to get their hands dirty. Hippocratic oath - my left butt cheek.

I am *still* working on a letter to mom's brother and sisters, so they know she is in the nursing home and won't have a phone. I can't seem to get my anger at them out of it.

It is still very weird for me not having any obligation to mom whatsoever anymore. I take the calls from the nurses who give me updates on her meds, behaviors, etc. I don't have to respond to mom's endless to-do lists, her demands, her loud complaining that I got it all wrong. No more laundry. No more groceries. No more doctor visits outside. No more errands to find all the things she had to have and never needed or used once.

It feels like when a cast has been taken off. Your arm or leg is suddenly free,
pale, cold in the air, and kind of pruny. It feels lighter than the other limb, and weaker. But at the same time, it feels like something is missing that you had gotten used to. I had gotten used to having to be a certain way, and I don't have to be that way now. I don't have to be on edge for phone calls. I have time back that had been devoted to her business. It's very strange.

Before I get too comfortable, I have a newly turned 13 year old daughter who is MORE than willing to slurp up any spare minutes there are, and to demand time that isn't there. Mom, pick us up here, take me there, do this, do that and the other thing. She doesn't understand the word no, and acts offended as only a young teenager can. Oh brother.... Let me quote her favorite movie of the moment, The Fault In Our Stars. "Turns out the world isn't some magic wish-granting machine."

Oh Sandwich, glad you are free of your mom, but replacing that with a teenager...you have my sympathies. I keep thinking my old ones are like children, but without the cuteness...at least it sounds hopeful that when the old ones get into a NH situation there might be peace and a life again. My young one is just turning 28, and needs nothing from me. Wah.
Have a peaceful day
Christine

There was a time when the kids were little, when mom would visit, I would put her on the same schedule as the kids. Meals, naps, bedtime. It all worked out so much better that way. She didn't need the same changing schedule as them - yet. If I could go back in time, I would bonk myself on the head that these were early signs of decline and I needed to get her affairs in order even if she whined and complained.

Thank you Emjo for your empathy and hugs. I've been reading about dysfunctional families today. The big difference from functional and dysfunctional families from John Bradshaw is that functional families have the means to cope, fight fair and solve problems. Dysfunctional families deny the problems, act as if they don't exist or create roles that keep the problems frozen.
That describes my parents way of dealing with problems for sure. This awareness helps me realize that my mother is going to continue to sweep any issues I have with her under the carpet and write and talk to me as if everything is wonderful. John says I need to stop looking outside myself for happiness and to be willing to stand extraordinarily alone. In this aloneness I will find myself. I once went into a retreat of solitude for 40 days, limiting as much social contact as possible. It was the longest retreat of my life. Now, I find myself very much alone again as I am stepping off the family merry-go-round. I am thankful to be able to write her with people who can relate with learning who we are from the inside, not the outside. Blessings from Bunny

Sandwich - what I "hear" from you is that you did, and are still doing, what can be done. Boy do I understand trying to get that anger out of letter you're composing. Well, if I can give you a bit of advice, just take out the anger and the blame and send the short, sweet facts. There's always the likelihood, sounds like, they will call you anyway and may make statements that will put you on the defensive... you can have at them then. ;-) Maybe for just today, you can set your rightful anger aside. And I understand about not getting support from docs. I'm seeing this more and more. Hrm. Your post made me realize I might have to be very firm when dealing with new health care plan and new doctors about getting services - that he obviously needs - arranged for my dad.

Cm - made me laugh about your mum being "clutter magnet." I suppose that's an elderly trait, I think its also a lifetime habit/mindset of some. When my father was getting weighed at docs the other day, the nurse spied his fanny pack, fisherman's vest, and two bulging back pockets where he keeps the fattest wallets crammed full of every biz card, membership card, credit card, and scrap piece of paper he's ever received - pretty much. She had him take the extras off/out and he dropped 7 pounds, I think it was. I just was happy for the opportunity to have a chuckle with the nurses about his pack rat nature... I've tried very hard to convince him he doesn't need to carry All That around with him, but... there's no changing him. That's ok.

Veronica - just want to thank you for all that knowledge about what many on here are dealing with in that brain of yours, and your input is very helpful to me and many others, I'm sure. So don't go getting any Real senility, please? You do make me laugh when you make jokes and suggest it, though... ;-)

Camaryllis - like others have said, I think you're doing great handling all this. I agree that its better with less drama made about normal situations the elderly face. Anyone going over the top just doesn't understand that its perfectly normal, if momentarily frightening, that MIL will misjudge her chewing/swallowing abilities on occasion, and at least she still brushes her own teeth!!! That's great! I hope FIL heals up ok, I know it takes their fragile skin so much longer to heal. I find A&D ointment helpful once the broken skin is healed enough. There's some better ointments out there made specifically to heal cracked elderly skin or diaper rash skin (Medline Remedy brand) but A&D seems to work well enough, imo. And I don't know that this will be helpful info or not, but I ordered baby wipes by the carton box for very cheap on Amazon for my grandma before she passed. I got the ones for sensitive skin. I could use those to clean her anywhere/everywhere and anytime. I liked them so much I got a nice-looking box to hold them in and still keep them on bathroom counter even now. Useful. :-)

The topic of children... I don't think I can really understand. I always Thought I'd have children and a family of my own, but hasn't happened so far and I'm 39. I am also open to adopting if I find a nice guy and finally have a good home and stable situation to bring child into... and I also think I might just go off oral contraceptives and find out if I get knocked up... KIDDING! Sort of... this biological clock thing is interesting. I have enough to think about without bringing that loaded debate into my mind. I do love children, though, and I did always assume I would be a mother. I know I still can be, even years from now. Being a mother doesn't just mean giving birth, right? But sandwich, I like your description of your 13-yr-old. I can only imagine. But at least she will outgrow that "center of the world" mentality eventually, right?

Hugs all, I'm having a good enough day. And you're right, sandwich, its just fine considering the possibilities. ;-)

Tomorrow is another doc appt, BP evaluation, for dad at good ol' VA. But soon, hoping to get all his issues (except Urology) handled by new PCP.

CM I am really idle about doing exercises. movement for me has to have a purpose like right now working in the garden. It is the muscles that hurt for me rather than the bones. When I get up in the morning I am upright and think I can do anything but an hour later..................What relieves me is to either lay back in my recliner or lean on a counter with straight arms. Right now I am in the middle of investigations for pretty much everything you can think of. I never and I mean never went to a Dr for years and years and now I am full of appointments. I was fine till I retired seven years ago then everything fell apart. I do think you should encourage Mum to do her exercises she needs to keep moving. Start with a few minutes and work up gradually as she tolerates it. I am sure you will have to stand over her with a whip or better yet do them with her. Just going for a walk will be good enough. Do it by time rather than distance

Emjo,

Good for you that you are making sure regarding the rules and privacy about your mother's updates. Given all the parties you are dealing with, it's really a preventative measure against unwarranted opinions hopefully, and just some dignity towards an elder, (even if sometimes we feel that elder isn't deserving).

I hope you get the estimate on the damage to your basement soon so this can be taken care of.

Oh!! Dental.....yikes! I hope you get through that, and you can just rest some.

Big hugs,
my friend,
Much Love & Light! Margeaux

I just found this website today and am flabbergasted to see that I am not the only one in my situation!! I quit my job as a Social Worker for 30+ years so that I could care for my Mom...I remain grateful for each day with her but the shock of realizing that three of my four sibs want nothing to do with our Mom...or me...just totally, and literally broke my heart. I was certain that all of us would care for her together, for HER benefit, but when the time arrived to talk to all of them as a "family", the result was that they now refuse to speak to me, and just barely speak to our Mom! What?? Surely not US!!! ...it's been a couple of years totally on my own with her and I STILL cannot quite believe it. Thank you all for being there, this was a BIG blessing to find this website and this way for me to somewhat "vent". Blessings to all.

Sandwich,

This is too much your last visit to see your mom.
I always say, anyone who's been a racist when they were young.....when they're older it just gets more pronounced. My neighbor is Dutch. She married and Dutch/Indonesian many years ago, and they had a daughter. She obviously has issues with her daughter. I noticed some time ago my neighbor saying anti-Asian remarks. I definitely don't like hearing them, either. It occurred to me one day, when she started to talk about the stereo types she manages to bring up, and thought, "wow, you say you have an issue w/Asian people, yet your own daughter is from Indonesian culture." She even admitted to me that she's never mentioned these feelings to her daughter, so she appears to know that it's wrong. I told her,
"Well, I hope you've never let your daughter know, these feelings." Must admit,
I was rather shocked on several levels about this revelation. I even wondered whether this plays into the friction they have.

It could be an adjustment period for you. You used to do so many things for your mother, now you are not having to do that anymore.
Oh! A thirteen yr. old! Well, that age group can be demanding, isn't it when it's all about them time?

Go have that Margarita!

Hugs,
Much Love & Light! Margeaux



This made me feel very uncomfortable, and I couldn't help but think, that even if she's never said this to the daughter, maybe the daughter feels some of this.
This to me is real proof that sometimes people are so brainwashed by their racist views about certain cultures.

What the heck happened to that post, it got separated.
Margeaux

Mama,
Nope, you are definitely not alone! I, too, am so grateful for this website, for the advice and support and comfort from other people in the same kind of situation.
Be well
Christine

Veronica very good point about the glasses. My mom only has reading glasses but often forgets to take them off when she walks. If I do not remind her to take them off, she gets dizzy. Try it sometime walking looking at the ground with just reading glasses on. I've nearly fallen down the stairs before.

Mama, welcome! A social worker from a family that has so many of the same issues we have?! You have come to the right place. Myself, the most dysfunctional of my bunch is a Sib that is a professional counselor, and a very narcissistic one at that. She has been cut from my life. Too much energy required on my part to try to keep her pacified.

Country mouse, my mother made that mistake once, thinking that a nearby relative could handle POA responsibility. When he manipulated her will, tried to reinvest her money & attempted to put her into a home, she fought back & asked me to take her to elder care lawyer. Thankfully, she was able to instruct this attorney clearly regarding her wishes, including living will, health care proxy, etc. The changes did not sit well with the previous POA & he is still angry about it. My mother is happy & that's what it's supposed to be about.

Locascio - thank goodness your mom still had her wits about her! Imagine if she didn't, it would have been very difficult to undo what the relative did.

Bunny – I like your comment on what John Bradshaw said on the difference between a functional family vs. a dysfunctional family. I’ve never heard it described like that. Based on that, I have a dysfunctional thinking. We were never taught as kids on how to solve problems – just do what they tell us to do and don’t question it. I’m going to copy and paste that into my file. thanks! Your second comment is something that I have no desire to investigate. To me, in order to find happiness that is Not outside of yourself – means you must learn to love yourself. Learn to have Respect for yourself. That really boils down to – Self Esteem. I’ve been struggling with that for decades. But John does know what he’s talking about.

Veronica, I smiled as I read your comments to CM about her mom exercising but you don’t. The phrase that popped in my head was: Do as I say but not as I do. ;;;; It sounds like you’re in constant pain. I don’t blame you about not being gungho with exercising. When I do my stretches, I have to constantly remind myself not to baby my aching body. If I don’t use it, it would become stiff. Imagine trying to drive without turning your head left/right or behind as you reverse?

Mama – I know what you mean. I have 7 siblings. Dad and I spent 23 years caregiving mom. He asked repeatedly for help with my siblings. He finally gave up. He said that he hates begging for help. Then about 2 years ago, he had a stroke and became bedridden. Now it was just me and 2 bedridden parents and a full time job. I cannot quit my job because we have bills to pay. Yet NONE of my siblings stepped up to help.

Christine "cuteness" and "teenager." Hmmm. Don't remember seeing those words so close together before… :)

Teenagers and elderly parents are NOT for sissies! I also have a 15 YO son. I read somewhere that God makes old people and teenagers ornery, mean, and cranky so you don't miss them so much when they go. Oh, if it only worked like that in real life.

Now you know why I picked the name Sandwich! I'm in the panini press between those two generations. You can recognize me on the street by my grill marks.