The Caregiver & Dysfunctional Families: How are you doing?

Golden, I think your Mom's case is interesting. I've never known someone whose parent lived past 100. I sometimes think if they were to study centenarians they would find some specific gene. They probably do study this but maybe there are not enough of them to provide enough research material.

Sorry, don't mean to talk about your Mom impersonally. But it must be so weird at eighty years of age to still have a parent around. I used to pray that my Mom would outlive me. Ridiculous I know, but I couldn't ever imagine a life without her in it. I sometimes have to give my head a shake that she isn't alive. It still doesn't even seem real to me.

You know as far as prognoses go, I was given such differing info. by the different doctors I spoke to about my Mom that I felt like I was on the tip of an ice berg wondering would it melt,would it not. I still can't believe how unprofessionally the whole thing was handled. I know holding this resentment inside of me isn't good for me but I would still like to see justice done to one doctor in particular for his treatment of myself and my dear Mom.

cw - they may or they may just not know. I had no sense that mother's dr was telling me what he thought I wanted to know. I let him know that mother was more than ready to go. I think it is more that she doesn't fit into the box he works in. He said he has nothing to compare her with. She is over 105 and has no significant diseases/conditions other than the vascular dementia. So he is guessing.

Her one serious condition is the vascular dementia, which, I believe, in itself can end her life. My father was the same, though he had had a few small strokes. His heart, lungs, kidneys, and liver were fine. He did have adult onset diabetes which was regulated in the NH. Eventually he went into Cheyne Stokes breathing which lasted for days before he passed. He had lost a little weight but not that much and was more articulate than mother is now.

IMO the vascular dementia, which obviously is progressing, will take mother -possibly the same way as my father went. She has never had a stroke or a heart attack or pneumona, but her brain function is being compromised continually. As she declines her immune system will decline too and make her more susceptible to infections. Personally I doubt she will make 110, but who knows. I hope we won't have any difficult end of life decisions to make, but I have been through that with my son so I know I can do it.

barb - that would be confusing unless she went with a sudden heart attack or stroke kind of thing, I see them as looking through the wrong end of a telescope so their field of view is very limited.

tg - good that it went well. Your dad does sound a little confused re the coconut instead of cheese. I am glad you are letting him pick up his own dog cremains and pay, It IS his issue.

Country mouse, Ive been the sous chef for years and the valet and the chauffeur. Tired of doing it... Then it would be all up to me and the cleanup like mom used to do. Nope, not doing it. He loves when he can direct and tell people what to do..... nope, have 58 years if that under my belt.....

I guess dads food went OK, didn't bring any home. I tell him all the time to wash his hands especially when he is in the kitchen. My wife Clorox wipes everything down.

Tonight I made meatballs and sauce and pasta for them zucchini spaghetti for me (not too bad). He gets up to get his Ramona cheese from the fridge (we use param). So after dinner I am clearing and he puts a bag of coconut flakes on the counter from the table. I ask, "did you eat this"? He says "no, I ate Romano cheese", I ask a couple more times get the same response. As I am putting it away I said, "you put shredded coconut on you pasta" ..... he replies "Oh, I thought you made the sauce too sweet"...... yeah.... my fault.....

Before dinner he's talking with my sister on the phone and telling her the vet called to get the cremains of his dog and "its $275. and there goes his Christmas money".... hasn't said a word to me since I am the one who took the dog in...... oh well, guess he has to go and get the dog and pay for it. I was going to but since he wont tell me its his issue.

Monday he gets an MRI for his back again, he is in a lot of discomfort. Tells me he has to go to rehab..... "what does that mean"? I ask. Then after twenty questions he is going to PT a couple times a week next week.... he loves to crank up the drama!

Stick a fork in me, I'm done.

I recall a nurse telling me that mom's " vitals" were fine 20 minutes before she died. I'm still confused by that.

I totally get why folks who are treated to info like that think that Hospice killed their loved one.

Golden, I think sometimes the docs tell us what they think we want to hear, remember our doc told me mom was stable and doing well when to me it was obvious she was in decline.

Thx duck I am better. Glad the utilities are being paid. Is your mum losing weight from not eating? Take care of you always.

tg - I agree that a phone call to the event organizer would have been a good idea. How did it go? Hope you and wife had a nice meal out, That's sort of making lemonade after being handed a lemon.

fraz - you are doing so well. Hope the financial (house?)stuff is getting sorted. If it gets too much you know you can step out. Glad that your mother has settled somewhat. I think the depression probably came before the dim light and closed blinds. Hopefully in time she will engage more in activities. Sounds like sil is a touchy person or was that day anyway - walking on eggshells around her is no fun. Has she always been like that? If not, maybe she is going through something. Yes, mother is feisty to say the least. Always has been. Indeed, a good book a fire and a blanket are awesome in the cold winter evenings we have here.

barb- having everyone wear food prep gloves probably should be mandatory in all such situations. It does sound like tg's dad is suffering some decline.

linda - bittersweet times. (((((hugs)))) The holidays always bring these feelings out more. Happy for you the house has been sold "as is" and it will close before Christmas, but as you say, it accentuates the loss of fil.

glad - the conference call went well in general - report below

It went well other than the lady who spoke first and longest with the most information about mother, her meds, and care plan was virtually unintelligible. R was on the other line - I need him there a someone who knows her history and has different questions than I do and as a another pair of ears. He could not understand much more than I could, But I have kept up with the nurses by phone so I have a pretty good idea of the meds she is on and her general routine. I could check the pharmacy bills when she was in AL to see what drugs she was on, but here they supply everything. They are trying another antidepressant and I am not sure if it is helping her much. I will call the nursing station in a while and find out. They are using a reclining wheel chair now which takes some of the pressure off her hips when she is up. That should help. Her stomach does not hurt any more since she has been put on meds for acid reflux. Also they have put her on an appetite stimulant. That is new. Her diet was re-evaluated and she can manage bread or toast with crust removed, and cut up unto small squares, and also sandwiches treated the same way. That gives her a little more variety. For activities she goes about once a week to musical events or church or hand massage type of thing.

Over all she is, as we have seen, sleeping more and eating less and there has been significant decline since the last meeting December 2017. They say they haven't seen her sleep as she did when I was there in that I couldn't wake her up, so I wonder what that was about, Her weight is down to 127 which at her age and height (about 5'2") is normal for her as she has sturdy bones and muscles. We will see over time if the weight loss continues. I expect it will with the decreased interest in eating. How the doc sees her living to 110 with this decline going on I have no idea. But her general organ systems are all working well. Mother is an ancient Viking sailing uncharted seas. That would please her.

Golden, how did the care conference go?

I'm feeling this weird mix of sadness and relief - the sale of my FIL's house is in process and is expected to close just before Christmas. They're buying it as is, so I don't have coordinate repairs to sewer line, likely roof and termite protection. It'll be good to have this off my plate and the inevitable family stuff that goes on when there's sibs and assets involved. But there's the sadness of our first holiday without Dad, and the finality of the sale. I love the holidays, but don't these darn holidays stir the emotions mightily!

TG; Not sure what to tell you about tonight's event ; can you contact the organizer and ask if there is someone who can stand by as dad's helper in the kitchen?

At my place of worship, anyone who prepares food is required to wear food prep gloves.

Your dad clearly has some cognitive decline going on. Are you thinking about talking to his doctor about these concerns?

Tg, yes I would be concerned for anyone who would eat dad's food, especially if he doesn't wash hands after he uses the bathroom, not to mention the salmonella concerns with undercooked chicken. Would he understand if you told him politely your concerns (the handwashing, chicken not being fully cooked, etc) and maybe suggested buying deli or catered food instead?

DDDuck, I understand not wanting to cause conflict with your family, but being concerned about getting your mom proper services. There are, the way I understand it, sometimes state appointed guardians that can step in and manage care when there are family conflicts or when family is not able to provide adequate care. I'm not sure how the state-appointed thing works. I had thought about looking into that here for my mom because of all of the family drama and may still yet somewhere along the line. For now, I'm still staying the course as guardian and trying to make sure she is taken care of and work with her docs to manage her meds, but there may come a point where I can't any longer.

You might talk to the attorney and see if he/she thinks that might be an option in your mom's case.

I'm sorry to hear about your cousin being in the hospital. I'll keep you and your family in my prayers.

Gershun- such a sweet tribute to your brother. He sounds like he was a very special, very talented man.

Golden - I'm glad you're feeling better and being good to yourself. A fireplace is nice and cozy during the winter, especially just curling up with a blanket and a good book.

Hope the conference call today goes well. Your mom sounds like a feisty lady. You may be right about her perhaps wanting a dietary change she can't handle.

I'm thankful so far that I have not seen anymore bugs. I'm hoping our decontamination and vacuuming after they left kept us from getting an infestation. Just kind of holding my breath to make sure we are still bug free. Ugh, just the thought of those things gives me the creeps!

I'm not sure what SIL's deal was. It does seem kind of narcissistic to me that she got offended about my husband telling his brother he should have called first, and not even in a mean way just harried because we were getting ready to leave to go eat with mom.

I told my husband I could understand more if SIL and I were extremely close and maybe she thought as a friend that I was blowing her off, but although we've never had a problem and have always been polite and cordial, we aren't "besties" that talk all the time. Both of our families are pretty busy, and we live out of state so mainly see them at family gatherings, etc. We've known each other for several years, but more as acquantainces. It was just odd because she seemed more upset than my husband's brother at the fact that my husband said that about calling first.

No news really on the mom front. Talked to her the other day and she was a little confused thinking her Dat scan (the test the neurologist ordered to scan for Parkinsons) was that day. I reminded her that we had needed to reschedule. (They had told us this last week.) Something about an isotope that was needed for the test that hasn't been shipped in yet, so that will be next week. Otherwise, she seemed calm and was with the nurse getting her insulin and meds when I talked to her. Still not wanting to get out or participate much. She was for awhile and then stopped. I'm hoping she will find something she enjoys and maybe start back to doing that.

But, the isolating is something she has struggled with for years because of the paranoia. Even at her home when she lived alone, for a long time she would refuse to go anywhere alone or at all, and would sit in a dim house with the blinds closed (and wonder why she felt depressed! ), despite my efforts to get her to go to the local senior center, or to church or to ladies groups there, whereas in her younger days she would go a lot. Mental illness and dementia are both horrible.

TG, bite the bullet and be sous-chef for the night. That way you can make small but important adjustments as you go along.

Dad is cooking dinner for his church group tonight should I be concerned for the people who eat his food? The last time he made food for us (the same chicken breast with walnut stuffing) was half cooked when served. I had to microwave it to get it completely cooked. He was cooking pretty regular for his lodge and they asked him to stop. I can only imagine what that reason was.
My kitchen is a disaster when he is done, he doesn't wash his hands so everything has to be decontaminated afterwards. He dosent wash his hands after the bathroom so I dont eat any of his food. I have told him repeatedly. The other night I mentioned to cut his chicken breasts in half as they are too much for people to eat. He likes to make everything bigger than life.
He had been a good cook before, That is where I got my cooking skills (my mother mostly). OK, so mom did all the prep and the cleanup and dad made a war zone out of the kitchen and left. He would do one or 2 dinners a year (OK just the meat). I learned to cook everything and prep first and clean as I go.......
He makes the same thing over and over. I guess I will leave my house today and comeback after he leaves so I can decon the house. Maybe take my wife out to diner first.
It was a nice 2 weeks with just the 2 of us.......

Thanks all for bearing with my posts. I try to say so many different things at one time. I am always mostly in a runnig mode trying to get out of the way before my mother comes type mode of action.

Well the electric bill was paid the next day. I didnt even check until I saw the bills come in yesterday with two notices. I didnt open them, and I thought the other postcard like notices were for disconnection. I called the case manager, (this was yesterday) and she explained this may be a blessing in disquise, she hated to say, and mentions certain terms, which hit in a nutshell what I felt was going on. Stated that it was just call to call APS. And to call her this am. I didnt get her after two calls this happens a lot. But before I called I checked and the bill was paid.

So I had this brief vision of victory over spite and ugly. But no desire to rub it in or want control in any of my mothers care. Just glad I might get opportunity to get her proper services.

So they wisened up and payed bill. I see lawyer on 22nd if she does not cancel again. I will show her these things.

I feel like if the care proxy was revoked and I was in charge of finances and care, if feel like my nephew and sister actually stop the little they do out of spite.

I have started leaving things as they are so they can see that my mothers is not eating and what she does with food. I dont think it registers, I think all they can see is that she doesnt even want to eat the meals on wheels, not that she not eating.

Anyways, I am still in a good place. I got emotional and sad at the thought of the APS being called in even if it would have been an opportunity to get proper care for my mother. I honestly dont care to have sole responsiblity for her care or finances or anything. I dont want to be in charge I just wish she had better care and its frustrating to see her bounce off the walls, not eating, she is so into being busy that she doesnt care to eat. Then she takes what ever is in the fridge and makes platters, open and spill stuff all over. She was into arts and crafts since I can remember. so now she found a big container of purple glitter and its piles of glitter here and there in the living rooom hall and kitchen. She puts garbage in the freezer. Although I dont really get shocked it just does something to my heart and my mind when I see these things. Especially worse becaiuse no one cares enough to check what she does and blames what they dont understand on me

So I find my self getting short if only for a minute. It also seems like my mother is starting to accept some of her limitations becuase she listens to me at times. Then there is the problem about bathing. It bothers me, I cant force her to bathe. I try to tell her she needs to bathe in a nice way. Hopefully my twistet or nephew will get close enough long enough to notice.

I feel bad that I am not on more often. Last night I had to train someone over the whole shift so I couldnt get on. Its so hard to use phone for this. Forget the laptop, I dont even use it!!!

My cousin is back in the hospital. The tube they put in her chest for drainage was leaking. and she fell this morning. Sometimes I realize that these things and the issues with my mother and family stay on my head even when I dont think of it, I just want to cry sometimes.

Anyways, much love to you all. Rays of light peace and happiness and strength and health to you all. I'm out. sleep tight.

Black Hole thanks for the advice. It was very helpful as usuall.

Golden, I hope you are feeling better. Maybe if its not over as of this posting you can join on a conference call during your mothers meeting.

Gershun, That was so beautiful about your brother. I had a cousin who meant the same to me. God sends us angels.

Frazzeled, I totally agree with you on cutting remarks. As I have gotten older I avoid that type of coward and have no problem maintianing that distance.

Ali, those remarks are taunting and hurtful to us. Its so sad our siblings can be so cruel. The thing is they know the how to trigger and what hurts. My sister when she made comment that I was just acting when my mother and I were having a normal exchange threw me into a rage in my heart. I dreamt about confronting her. I dont like confrontation. But after 2 dreams I had an opening to confront her about the nerve to think I had any respect for her thoughts, she raised her hand to hit me and it was on. She does that to me even as a child. I have learn3ed to keep my distance from her becusae of so much pent of anger and pain, and discouragement from her. I think you should do the same with your brother if that is all he has for you.

Brahr, Its so sad how one person ends up carrying the load. Then get resentement and blame to boot. Welcome on board, this is the place where you can find some solace and understanding in your pain. There are so many wise and understanding people on board here who have been through similar and or worse. This forum saved my sanity and my heart from breaking. Just knowing someone understands. Keep posting. Just venting helps.

Distance works for me too! I will be relieved when this is all done.

fraz - starting to feel quite a bit better thankfully. I could tell from what you wrote that your hub wanted his family to visit. I am glad you had a talk and decided what you did. I wonder if sil is a bit manipulative/narcissistic. Getting offended is not usual. I hear you about the distance being a good thing. I hope you get rid of the bugs. I know it can be done.

blackhole - it does seem to bring out the dysfunction. Lots of denial. It adds to the exhaustion. Distance is my solution too.

Bahr - imaginary crises - oh yes! I am sorry you have the bad end of the stick. I don't know of any legal recourse to collect from sibs but I have read on here that there are some states with laws about filial responsibilities. Quote from the internet - "Believe it or not, about thirty states have laws on the books that that impose a duty, usually (but not always) on adult children, for the support of their impoverished parents or other relatives." You might want to check it out.

gershun - older losses hurt too. He sounds like such a lovely man and a very special brother. As a mother who has lost a son, I know what your mum went through. Losing a child of any age is brutal.

glad - it sounds suspicious to me. A lawyer familiar with the case sounds good.

PTL I am feeling better. Yesterday I had some housework done before 8 a.m. Today I got busy a few hours ago. What a relief to be able to do more. Still a bit achy here and there but so much better. There will be a conference call tomorrow afternoon with the NH team. I am not expecting anything much from them except perhaps a change in mother's diet. I think it is unusual for some one at her age and stage to go back to eating solid or even semi solid food, but you never know, She certainly is not usual. Perhaps the relining and the polygrip are making a big enough difference. Or maybe mother is just wanting a change that she is not capable of handling.

Take care all. Do good things for you - even small ones. I lit a fire in the fireplace this evening and enjoyed it thoroughly.

And three years of the time sis may claim fees for financial management? A conservator was being paid a very high rate (even according to the judge)! I and conservator were doing the financial work! Have not contacted an attorney yet, maybe the same one that is familiar with the situation?

Awww Gershun. You’re making me cry! A lovely tribute to a lovely man.

Gershun,
Such a loving tribute to your brother!

Isn't that what everyone really needs, is someone to spend time with us, creating memories?

Thank-you Golden, Send, Ali, Madge for your kind words.

Actually, Golden my dear brother died in 2003 so this is not a recent loss. I still can't believe it's been this long already. He was only 57. The same age that I am now. He was a nut. Sort of like my second father as my real one died when I was very young. He did all kinds of special things for me growing up. Took me out to my first bar when I was only sixteen. Yes, I know................... LOL I'll always remember that day. He took me to Fairweather's. A store here in Canada for those of you who live in the States. Bought me this crazy top. Gold shiny fabric. Really soft. Then he took me out for a really nice dinner and then off to the club we went. One of the best days of my life actually. He was so funny too. He made me laugh so hard sometimes that I would have to sit down so I wouldn't pee. One time we went to the fair here that they have in the summer and I had to sit right on the hard ground cause I was laughing so hard. He was really into sports cars too. We would go for drives in his latest one and he would get onto the highway and say "lets's see what this thing has got" I was scared but excited just the same. He was smart as hell. Knew all the answers on Jeopardy. Talented too. A great musician. Played the piano and won awards for his playing. He taught piano among other things. I'll say it right here. He was gay! Nobody judge. He had a hard life because of it. It wasn't easy to be a gay man when he was growing up. I'm sure it still isn't. But he lost his partner to Aids and basically became his partners caregiver. He was never the same after that. He lost his spark. No, he didn't die of Aids although he was H I V positive. Losing him was almost as hard as losing my Mom. He lived with her his last five years and I always thought he'd have taken care of her in her declining years cause he became a nurse among all his other talents. She took his loss so hard. I really thought she would die of a broken heart. I know when I was mom's care giver that he was right there with me helping out.

But anyway, let this be my little tribute to him. My dear brother...........I love you and miss you. :(

I have brothers and sister who have not helped in any way shape or form, I have been mothers caregiver for the last 25 years a job I did not asked for but family ran left me stuck when I injured my back after all this time I have dealt with financial, verbal abuse, destroyed hopes of romance because family would back out at last minute because of some imaginary family crisis, the last go around sister promised to watch mother because of me pleading to help me because I was burnt out I need a few days away spend time with a GF to find a little peace from the constant verbal crap from mother and the overall stress, she backed out 2 days before I was to leave, NOW no more GF, known her 25 years gone, she had enough I don't blame her, but sister is claiming to be the victim of my anger, They are pissed because mom home was signed over to me but they will not listen I put in 70,000 to make it safe warm and livable for mom house is only appraised at 82,700. Do I have any legal course to collect from siblings who refused to help physical and financially and never even asking me if i would take care of mom and step dad. I am burnt out cannot afford to hire some one to stay with mom and with her abuse no one wants the job

For me, caregiving really highlighted my family’s emotional limitations.

I was never optimistic about their ability to be supportive. But the past 5-6 years have been such an eye-opener. Ugly-but-true stories popping out of the closet. People who meant well (and people who didn’t mean well) clinging to their short-sightedness at any cost.

It’s impossible for me to sum it up in one takeaway. I had about a dozen takeaways.

But this one jumps out: I was the #1 ringleader in my mother’s caregiving. Yet participants #2 through #?? would frequently doubt, deny or refute whatever I reported about my mother’s situation.

I’m evolved enough to understand that their gaslighting was (primarily) a manifestation of their own denial. That doesn’t make it any less exhausting, or any less invalidating.

Post-caregiving and post-estate follies, the only way I could move forward was to create some distance. And I’m fine with that.

Ali & Gershun- I know what you mean about the cutting remarks. My mom's mom (Ngrandmother) is the master at those. One reason I no longer speak to her (among many). Same with sis, except she will be SO nice to your face and have the knife waiting as soon as you turn your back. It's how she was able to bilk mom out of most of her savings, and it was a while before we could even prove anything, until mom's attorney started investigating. She makes all of her cutting remarks behind my back, and her and Ngrandmother have helped alienate my oldest daughter, who has mental health issues of her own, from my husband and I. Golden is right, who needs the criticism and negativity? Actually with family like that, who needs enemies even?

Glad - Sorry you are going through this with your sis. I can't believe the gall of some of these twisted sisters that think they are entitled. The greed is just unreal.

Golden - Yes, I think you should stay home and take care of you. Good decision to do the consult by phone. You need time to heal and feel better.

You are right about the situation this past Thanksgiving weekend with my in-laws. I went ahead and caved this time mainly because I know my husband has been missing his out of state family, and we've had so much going in this year with mom and him being busy at work that we haven't made it down to see them.

Hubs and I did have a talk afterwards and decided that if it happens again, we will have to tell them to make other plans, especially if we already have plans, as we did this time. I still don't understand why they got offended. I mean, I would not expect anyone to drop their plans for me at the last minute. Or be mad that they aren't just sitting around waiting for me on a holiday morning. His family is not quite as bad about the drama as mine, but I think it helps that we live out of state.

I'm really hoping and praying we didn't get bedbugs. We vaccuumed pretty much everything, beds, furniture, carpet, etc. and threw everything we could into the dryer, and washed all the linens and laundry. From what I understand, it's expensive if you end up having to call an exterminator and they are hard to get rid of. It just gives me the heebie jeebies because I don't do creepy crawlies.

ali - this behaviour, though the remarks may be short, has some heavy implications in my mind. "when I was very much in need of some kindness, all he contributed was criticism." That sums it up well. My sis even criticized how I was grieving the loss of my son. So did mother for that matter. Who needs it?

Those little verbal slights are typical of how my older bro treats me. I remember one time, I was ironing a shirt for him and he was making jokes about how I lost my mind during caregiving.

-- I'm doing him a favor.

-- He finds it a good time to make snarky remarks to me about what a hard time I've had with caregiving.

That example sums up my beef with him. He has no sense in how to be decent, much less kind, to me. Even when I was very much in need of some kindness, all he contributed was criticism.

Hugs, Gershun. A sibling-friend is a tough loss, as is the loss of your loving mom.

gershun - thx, Sorry I missed your post last night. The fm affects everything. My deepest condolences on the loss of your brother. You lost a brother and a friend from the sound of it. I am so sorry. One year anniversaries are hard. Why do "good ones" in a family go first?

My sis plays those kind of games too -slipping in a "nasty" in front of others that sounds fairly harmless on the surface, but she knows how to get through my armour. That's why I stay away from her as much as possible. I can't change her, but I can change what I do. It is not nice visiting with someone who puts you down. Her behaviour is not welcoming. Here's an idea, if you go, Be the first one in the door and go up to sis and say "Merry Christmas, sis!" Then she can't miss you. Not having your mum and your bro there for support would make it more than doubly hard for you, I sure understand if you decide not to go, If you do , lowering expectations is a very good thing. ((((((hugs)))))) Madge's idea is good for today.

glad - I feel much relieved having made the decision to stay home, and just a tad guilty, but nothing unmanageable. It's awful how that guilt still hooks us, Still aching, but not as groggy/foggy as I was the past few days.

I think I have gone off coffee - what a loss!!!! Tea it is! Maybe I will get my coffee habit back eventually, I hope so. ☕☕☕ 💔💔💔

Gershun

can you get into a little mischief yourself tomorrow? Bro and mom will be right there with you in spirit

Golden, you just stay home, warm and safe. Don't forget to get feeling much better too.

If she wants to keep some, I would think legally she would have to buy them from the estate. It is her job to liquidate assets, Thank goodness mother's are all on paper,

Talked with a friend down there and she said there was a white out this am and the highway is bad, Snow is expected all weekend and it is warm enough that the road melts then freezes so it gets quite slippery. I am still aching and very tired, so I think the answer is to stay here and do a conference call. 5-6 hours of travel each way is too much for me right now.