The Caregiver & Dysfunctional Families: How are you doing?

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

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.

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

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."

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

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.

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?

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.

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.

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.

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!

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.

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.

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

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.

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.

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"

Locascio - yes, looks like lots of manipulation, usually for personal gain. Sounds like she needs some protection. Denial is common among family, even sibs. It is more comfortable to sweep health issues under the rug. Very confusing about your mum's condition, She has a brain tumor but there is no follow up??? I would go after that to begin with and find out what treatment they intend to give her. I can't think that that would go untreated. I would also go after her eye problems and the extreme fatigue. I know this is difficult for you when she lives at a distance. Are you prepared to be POA medical and financial? If not, someone else you and she trusts should be. It is needed for her care now. Good luck and keep us posted.

Christine - if it is too late for POA, guardianship is in order and gives authority to do what has to be done. Do encourage Charles to pursue POA for with your mil. It is pretty simple through a lawyer. Fil well may have PTSD. I think many vets do. Dementia could make it worse. So glad you found an NH for him!!! It may not shorten his life - the routine and conditions there may benefit him. Good that you are carving out some time for yourself. Congratulations to you and Charles. G and I are looking after other business before us too. Sigh!!! It just has to be that way right now.

Austin - make sure you make time for you and C. It is easy to get caught up in other things.

Glad - Sounds like Teepa Snow has some great info

Sharyn - not much wedding planning going on right now. Dealing with sis and mother's fallout, still waiting on a quote for the basement, G busy with horses, dental surgery tomorrow. I want a burkah to hide my face for a few days. lol Enjoy your time off.

broken - so sorry about your dad and also your g'ma's attitude. I know you are still grieving for your dad and that is normal ((((hugs))))). It may be time for a facility for her - independent living, assisted living or NH according to her ability to function. Does she live with you? Drawing some boundaries when she yells at you should help. Has she been diagnosed with dementia? If you dad was her son she is grieving him too and that is a very hard loss, but still no reason to take it out on you. Do something good for you every day, even something small, and come back and let us now how you are.

Really isolated from the family now. Mother sent me a birthday card and said there was a check enclosed. There was no check. She said she is sorry I feel she is treating me unfairly. Too bad, so sad. She doesn't get that handing out huge wads of money to my children and my brother and gives me nothing is unfair? She invited my husband and I for dinner but I'm not up to it at all. I'm working through a lot of grief right now from the past which has been triggered by mother's destructive, unwise estate choices. I spent some time journaling about my 25th wedding anniversary (this weekend is our 40th) where my mother had wrapped dirty, chipped, old cups and saucers in scraps of paper for our gift. I have always been too shocked and bewildered over and over again by their behaviour to feel any anger. Today I felt anger and as I prayed through it turned to sadness. The lie I had bought from them that I am worth less, not valuable, only good enough for the garbage and the left-overs I pray will be replaced with God's truth that I am His precious child and of incredible worth and value. I impart this truth to my piano students regularily and the residents in the nursing home where I do ministry but now I realize I need to give myself this message over and over again till it gets right down into the core of me.
God bless you all, Bunny

Funny-Weird-Uncomfortable: Last visit to mom, she said she had to go to the bathroom (she already had and was as wet as the Gulf of Mexico). She really wanted me to help her, and I just can't. I am not trained on how to support her, or what to do to stop a fall. I physically can't hold this woman up. I said that I would run get somebody to help her. She looked quite alarmed and did that secret-mom-whisper things - "Honey, it's gonna be a big black man!". I just looked at her like I look at my teenagers when they are being ridiculous.

I don't know what came over me. The heat. Menopause. General frustration. Possible demon possession..... Anyway, I leaned in close to her and mom-whispered back "I'm sure he's seen older p_ss_ than you got. Absolutely nothing is going to happen to you, and you are really in no position to be picky about who helps you get into clean pants today." As I left the room I could hear her complain that "It's supposed to be youuuuuuu!"

Ahhhhh! I reported it to a nurse and got in the elevator. That was enough. Where is the nearest margarita?

The reason mom is so obsessed over this whole black person thing is that she grew up in the rural south in the late 30s, 40s, & 50s. White women were inculcated from cradle to grave that black men had no greater goal in life than to ravish a white woman. I mean really. It was propaganda from the KKK groups to create a perceived need for their vigilante actions and racial purity insanity. Mom never learned any different. Even though in her whole 76 years, not one black man has ever attempted to touch her with a 50 foot pole. Her own life experience didn't even teach her anything. She still has that brainwashed fear woven into the live parts of her brain to this day.

The sad thing is that most of the health aid workers & attendants at her facility are from Somalia and Liberia. Those folks have been forced out of their homes by soldiers and probably have lost too many family members in the conflicts. I don't know if it meant anything, but I told mom these folks are here because they have to be. I'm sure they would rather be back in their real home with their family members and their own mamma, doing whatever was their profession before, instead of here, having some old white lady call them names, be as difficult as possible, and act like she's afraid of them. It just seems like a slap in the face by fate.

I thought so too, apparently not with Dell.

You would think speakers are standard!

The Teepa Snow videos I can watch on my cell, I need to get speakers for my computer because I goofed when I ordered this computer. When they asked if I wanted speakers, I thought they meant in addition to what already came with it. So, as a result, I have no sound. I thought speakers were standard,

Sandwich,
Well said.
Thanks for the info on Teepa Snow...I will go check that out.
Hugs
Christine

Hi Alison,
Ugh. I have a stepson who sends detailed lists of what we 'must' do for FIL, my answer is if he thinks he can do better then he can take FIL home with him. I am not willing to listen to anyone who is not helping tell me what to do. It would be harder, I am sure, if we had more family involved. Thankfully not. It is hard enough dealing with all this and not losing your own mind. You are doing what you must, and you are handling it all so well, be hugged.
Christine

After watching a bunch of Teepa Snow on Youtube, I'm a huge fan. Her info has surfaced "just in time" for me. The series on Making Visits Valuable is tremendous. I'm on part 11 of 16. They are only 10-12 mins long, but each one is solid gold. She explains what we see, why they're doing it, and how we need to react. This stuff needs to be broadcast on nationwide TV once a month.

So many don't understand or accept what they see with a dementia patient. My mom's sisters are like that. They are personally responsible for mom not getting the right care years ago. They are directly responsible for mom's rapid declines since 2010. They talked her out of help. They whipsered nasty things about me to her. They fed her b.s. day & night that I was going to take all her "money" (ha) and dump her in a nasty black-people filled nursing home. Oh the horror.

Well, mom is in a wonderful clean nursing home now. Yes, there are black people. Whoop de doo. There's brown, red, yellow, white, pink, carmel, coffee latte, weak tea colored, and other people there too. I told her I don't personally care if they have plaid green skin and antlers if they can take care of her and put up with her nonsense.

Re Troll Letter, of course it would be sent to everyone, silly of me to think I was special, haha... I suppose it was my shock that "they" had invaded AC that was most surprising. I did repost but also clicked the infamous "Report this Post" button on the post, hoping mods would see it. It would seem they did and vamoosed it.

Re info email to brothers, again, Margeaux, good points, I think. And my older bro has been described as a bully by other family, too. And yes, younger bro is all but entirely disconnected.

It was my older bros insistence that I keep "everyone" updated with what is going on here at house, and with my dad. So I did. I started CC'ing bro's personal email addy on all the dealings with the Trust, etc... but bro never reads them. And yet all this time of roughly the past year, my bro thinks I'm somehow responsible to pack up my father and get him moved to Indianapolis. My bro has guest room and guest bath in basement of their home - but you better believe my bro says dad isn't going to live with them! So bro doesn't want to be of help, or be involved, but bro puts lots of undue pressure on me to do all the work and is nothing but critical and questioning... In the latest email I tried to convey that I cannot "make" my father move against his will as he has not been deemed incompetent and so is legally able to make his own decisions where he wants to live. He is very clear about wanting to stay in this house. Bro has said previously, on more than one occasion, that "it doesn't matter what dad wants." I disagree.

Sadly, Camaryllis - I've seen a variety of behaviors in family members who were unfortunate enough to have to live with Alz/dementia. Learning/educating others in your family about what to expect and coping methods is the way to go. Treating them like they are still able of correct thinking is both hard on them and hard on you, I would argue. I wish you both great strength, that journey through Alz/dementia isn't easy on anyone.

Everyone have a blessed Wednesday.

Hi Sadly,
A lot of people don't understand about dementia. I have done a lot of research, and am better at handling it now. But not everyone in the family gets it. Even Charles was screaming back and arguing with his late stage dementia father before he understood that it was futile. And you have to know not to believe anything you hear there, my FIL was screaming about us holding him against his will, and that we had kidnapped them. I have never felt so helpless as when he is in crazy town. Sounds like your family just wanted her stuff though? And there is very little appreciation or encouragement for doing this kind of work, except here on this forum.
Be hugged
Christine

Alison,

Your brothers show no genuine interest, nor concern for your dad's health.
The older brothe sounds like a complete bully, and the other one sounds very disconnected. Certainly updating them as the informational process about dad's health concerns, I understand, and let's say if it was decided he would have the Prostectomy, I'm sure they'd be informed. When the doctors told my sister mom would need to have Gallbladder surgery, she called the siblings up. We met to make a decision because of mother's advanced age. Many times I don't get all the details, nor am I told about the times mom has been to the ER. I find out after the fact, because my sister is the controller, she's not like you willing to share all the info. Sure, this has made me very mad, because it points to a history of behavior by my sister. But, I've decided, as long as I know when it's getting real serious, at least I'm told. It takes too much energy on my part to react by getting hurt,etc. So I've let it go, and I figure.....
"My sister needs to control it so much, so let it be." There was a time, this kind of stuff would hurt my feelings. I just can't waste my emotions on this anymore!!

The fact that you also added the last paragraph, maybe you should have drafted it, but not hit submit. HAAH! What you need to zero in on here is, "Am I sending them the update," as informational, and that's that, no need for a reply. "Am I sending the update w/the added paragraph, because I'm expecting them to show gratitude, or consideration towards me for everything that I'm doing for dad. An abusive nor disconnected person is going to give you that. Try not to waste your good, productive energy focusing on that. I think it's a matter of possibly changing the way you analyze it, and not allowing it to bother you.
Yes.....easier said than done. But it's liberating!

Hugs,
Much Love & Light! Margeaux

My story is family turned against me when mother started with dementia. She was saying crazy things about me to them saying I'm mean and she's scared and lots of nonsense. I was paying her bills and they said I was taking her money. Mother would say I'm spying on her and just crazy talk. But they believed her and now hate me and don't want anything to do with me. She's in nursing care now and then they helped themselves to all her furniture and belongings. I just don't understand why they believe what a dementia person says. I was only ever looking after her and doing what she wanted. Very frustrating when you do the right thing but family turn against you.