The Caregiver & Dysfunctional Families: How are you doing?

Hi all. Thanks for asking about us, Golden. My son was in town for part of spring break so the VISITS with FIL/MIL and with my friend(courtesy Aunt)/her mom(courtesy Grandma) occurred. Son visit was great - he had to get social security card replaced because he forgot where he put it. Good object lesson with self advocating and keeping track.
FIL/MIL - he is now on oxygen concentrator and cannot even eat at table without the cannula in his nose. MIL told all at table that she is on new meds that prevent "wiggles" and then proceeded to not be able to sit after 20 minutes without jerking and unable to lift water pitcher without help. She is also "zoning in and out" - i.e. onset of dementia with the Parkinson's - and seems to have trouble keeping her stories straight with her woe is me to my husband and her I'm fine to me. They are getting worse - faster and faster. My husband and his bro are making choice not to get actively involved. I was able to sit at table, not bite on any of the leads for all the help that they need and loneliness to see me and have help with paperwork not specified, and not fight tooth and nail over hubs decisions. It's just giving me a framework for my responses going forward. *sigh*. But I'm ok. looking for new job but not telling anyone in extended family so that no pitch for my "available time" is made:)

Tryingmybest.....I have tried to be more silent over the years. I don't think I'm cut out for it. And I really wish I had the willpower to just keep my mouth shut when someone is being judgey or rude or obtuse. The stupid thing is, it ends up being such a waste of my time in the end! Again.

golden - I meant to ask, whereabouts-ish in the interior is your hubby looking? And I realize, too, I'm not totally sure what he does!

50schild - how did things end up with the nun?

Duck - just re-reading your last comment....it just seems you really want your family to be something they can't be. I think maybe you still keep having these expectations that they are going to rise to the occasion and become better people, instead of accepting that they're not, and never will. I dunno if that's crazy so much as it is extreme optimism, lol. But the thing is, you know who they are - they've been showing this whole time, and for all your life, really. Perhaps what's actually dragging you down is the constant disappointment you feel when they fail to meet your expectation that they'll change. I'm no stranger to that feeling! But maybe if you can let go of that expectation, you'll start to feel better. ((((big hugs)))) You are more than your family. Remember that.

That makes me think....lately I've been wondering if I am setting myself up for disappointment with my brother. I sooooo want to have a relationship with him again. So much that I'm doing all that "women's emotional labour" stuff in helping him to say goodbye to our mother - like as if I already know I'm gonna be sooooo strong and stoic about it that I have to support the weaker one.  I'm a bit surprised at myself, because I'm very much for men being self-starting, responsible, equal participants in the maintenance of functional families and relationships, and very much against the stereotypical pattern of women being the family secretary/central operations manager. I find myself saying things to my friends, like, "I don't want him to have any regrets." Like that's my responsibility or something!

For awhile, I was trying to move past our previous sh** for our mother's sake. But now - especially since I started recognizing our mother's role in helping to push us apart - I'm realizing how much I don't want him to disappear out of my life when she is gone. It's like.....we're survivors of the same war, and we're the only two people in the world left who witnessed it. The last two old veterans standing at the cenotaph.  And I feel like I don't want to be a survivor all by myself. I want to know there's one other person who understands completely what I went through, instead of all these other people who either don't get it, don't believe it, or just feel sorry for me.  Does that make sense at all?

I can only admit this because he said something nice to me, lol.  It gave me hope.

Guest, you always have great suggestions! So much wisdom on this thread. I’m sorry to hear your in-laws are getting worse. Hubs and brother do have decisions to make. I get not telling family about available time while looking for a job. I got where I didn’t tell my sister what my days off from work were.

My gardening starts sooner than excepted as I received a lilac yesterday. I missed the email informing me it was shipped. Tomorrow I will plant it.

aw, thanks Sharyn.
Funny conversation after though. My husband told me a family story that has come up again recently that he didn't want to repeat "because it would make me think less of his parents". "It would reinforce my bad opinion of them". *haha*
When his parents sold a house in Florida when he was a boy, there was some notation for some reason that the interior had to be repainted. Hubs not sure if law or in closing paperwork etc. Well, his parents were given a list of colors very specific and expensive paints. They proceeded to get cheap paint (one room slightly orange, another slightly pink, etc). His mother recounts this story again and again giggling when she repeated last week (I know because hubs mentioned it) "We were so BAD !!!".
I just looked at him - what normal adult does that? As a kid we accept the weird stuff that adults do. As adults, that sort of statement really reinforces my belief that his mother's narcissism under influence of Parkinson's has advanced to include dementia. She said the same "So BAD" comment about walking without walker in living room with hardwood floor at house on visit. I just told husband that the two of them are sliding quickly down to the caregiving abyss. I will be involved to some degree because I'm his wife. We live in the same house. His income is the main one for our household. His job frequently calls him in "for some emergency". I get it. I do. But I found a list of affirmations and will share a few with you all here:
I always have a choice.
I can always say "no" to people or situations that do not align with life's highest good and purpose.
I can say "no" and walk away from situations that cause me emotional pain or turmoil.
I do not have to do something because someone tells me I *should* do it.
I choose to let go of self blame, I choose to let go of poor self-esteem, and I choose to assert my individual rights in my marriage.
I realize that I am inherently worthy of being cherished, being loved, experiencing loyalty, and experiencing emotional SAFETY in my marriage and other close relationships.
I AM NOT RESPONSIBLE FOR MAKING OTHER PEOPLE'S BAD DECISIONS WORK.
peace out my brothers and sisters in this place of safety:)

Duck, Dori is totally right. Good answer Dori.

Becky - aww thanks! Shucks. :-) How is your head doing?

Guest - I love that list! The last one reminds me of something BFF often says to her sons: "A failure to plan on your part does not constitute an emergency on mine."

Sharyn - Ooh! White or purple?

Well, speaking of boundaries and standing up for oneself, I had to stand up for myself with the home support agency this morning. Posted about it in the whine thread. But basically they wanted to negotiate cutting our service visits back by one per day, putting the work load back onto me. I suspect they're probably starting with the "nice" people to see what they can get away with. (Dumb move to wake me up in the morning. I am not at all nice then.)

They are a private agency under contract to the regional health authority to provide home support services. Palliative home support is 100% covered under our provincial medical care. The care plan was made by the community nurse, based on her assessment of mom's and my needs. Supposedly the agency is "short-staffed," but I've been hearing that since we started getting home support, and, well, you know: "A failure to plan on your part....", etc.

So I not only stomped my feet and said a very emphatic, "NO," I wound up leaving a message about it for the community nurse this afternoon. I was hemming and hawing about reporting it all day, but I got to thinking, what is going to happen to all the people who can't say no, because they're afraid to speak up or they're too sick to fight back? Cutting services to the dying is just really f***ed up. 

Purple lilacs, lavender lavender, soft pink semi double rose! I’m a purple, lavender color girl😀

Dori -stick to your guns,-and, yes, others don't get it.

sharyn - the lilacs sound lovely.

Off to get my thyroid levels tested. I have been "out of it" - fatigue, leg cramps and more. It is hard to distinguish from CFS/FM to a degree, but the thyroid problem often crops up at the end of winter and the bedtime leg cramps, particularly, are typical. Here's hoping...

Been reading but not up to responding much. Take care all.

Guest, I love the affirmations, quite a few I never considered.

Dori, good for you, stand your ground!

Golden, hope you feel better soon. I get night cramps too. Lately almost every night.

The bare root rose arrived today and it is a stormy rainy day. I’m soaking the rose over night and hopefully I can plant it in the morning.

The boys are great! E has improved so much and has become quite the chatter box. Play dates have really helped with his social abilities as well. L is potty trained and can start pre school next August. Dd will have a few hours to herself with both boys in pre school.

Thinking about all of you, have a peaceful day!

Glad,l

Thanks, and things are going well w/in parameters one could say, but I'm thankful nevertheless! How are you doing? I'm trying to read here, and not going to say catch up, as that would be about next to impossible, but hope you are well, and that the twisteds don't bother you as much!

Much Love & Light! Margeaux

Sharyn - you're garden sounds like it's going to be so soft and pretty!

golden - oh, I feel your pain. I sometimes get leg spasms and cramps at night because of my twisted pelvis and dumb knee. It's the WORST, having to hop out of bed and work the dang thing out, especially when you're tired....

Well, I just got back from swimming. Found a good workout for my legs and hips that I hope will help. BFF came with me - we went back to my apartment to meet best guy friend there (he had one of my guitars to bring back). We hung out for a half hour and it was SO NICE to be HOME. Sigh. Packed up all the non-perishables I stocked up last time I stayed there, and brought them here. I'd be mad about the waste, if stuff went rancid or stale....I have no idea how long I will be here at mom's, really.

I have the tiniest kitchen in the world, but I miss it. Or....I miss all my kitchen implements! Mom has this wonderful kitchen - brand new building, so new appliances, big, well-laid out kitchen....clearly designed by someone who enjoys cooking and company. Mom NEVER cooks, and never really has - she detested cooking for other people.  She has, like, one tiny teflon fry pan, one saucepan, no good knives, no electric mixer, etc. All those little things you get used to having when you cook. I already purchased some proper baking pans and mixing bowls, but I didn't want to spend a fortune on new stuff just for here. And I've been hesitant to bring over my cooking things, because it smacks a little too much of permanence. So I've been making due....for months and months now! (Edit:  I just counted - NINE months, holy sh**!)  Funny how weird time moves when you feel like you're in limbo....

I do miss being able to cook properly. That's actually something I enjoyed MOST about those few weekends I spent at home. I think I will just have to suck it up and start bringing stuff over....

Dori I get your loaded kitchen thing.. both hubs and I love to cook. If you don't want to spend a fortune kitting out moms great kitchen, go to Goodwill or a resale store,, or Ollies if you have one, and buy some gently used stuff. And enjoy all her space!!!

Pam - I did try one thrift store, but I was kinda....this is maybe weird....I was a little creeped out by the stacks of used kitchen pans and utensils! And before my injury, I actually used to make a hobby out of thrifting for clothes, furniture, decor stuff, fabric...so it's not the idea of it being second-hand. I guess I should give it another shot, maybe it was just that one place.

Just clean them good! I have gotten lots of nice things for our shared vacay home. Plus I got a great foreman grill after I gave mine to DD! And extra muffin pans, etc. I;m sort of cheap,, if I am not going to be sure I love it,, I'd rather test it out cheap!

Yeah, you're right....it's probably just the old grease creeping me out! But I'm with you: I'm definitely cheap - half my wardrobe is from thrift stores, lol. And lots of my furniture. Heck, I even have a couple of pieces of furniture I picked out of people's garbage and restored, lol.

I like thrift stores. Used to buy things regularly. My son is the curb furniture specialist. When he went to WVU he picked up furniture on the curb all the time. Brought it to his apartment. Cleaned upholstery, made repairs and sold on dorm move-in weekends. He made a lot of cash that WVU was glad to have him pay.

Loving my new copper pot and also the wok. The pot is 15 " across and great for many things with such a big surface. Years ago in Montreal I used to go the Hadassah bazaar and get beautiful crystal serving bowls for a price. I had them until recently.

My Mom and I had a booth we rented at a Flea Market when Mom broke her neck and my caregiving journey began,so I had to keep it going by myself till she got better and then we went back to finding things together to fill it.We tried so hard to make some money,but it was a bunch of rigamarole for hardly any money and then one day the owner sold his shop and we had to move out.Mother was determined that we would get another booth in a different Flea Market and we did and after she died I had to pack it up by myself.It was ALOT of work and something she wanted to do,but I just did it for her and now I don't even visit Flea Markets or go garage saling anymore.All the fun is gone.

Hi All, Thanks to Everyone who had great advice for me. I want to say that I happen to have some Relatives and also know Friends & Neighbors who have Elderly Parents and who have made changes so that the Parents can live in a Safe place with help. In some cases the older Parents made the decisions for themselves, and for others - it was the adult Children who wanted their Parents to move to AL. In fact, my Mother's middle Sister (& her Husband) decided to sell their Family home to their older Daughter who was married and had twin girls. They also have a younger married Daughter who lives right across the street. So, my Aunt & Uncle added on to that house, they built an In-Law Addition to the house. My Uncle had Parkinson's and eventually had to be cared for in a Nursing Home. The NH was right near my Aunt's house, so she was able to be with my Uncle every day. They were a very close couple, and had a wonderful Marriage, so my Aunt wanted to make sure that he was well taken care of. She made sure that she found a place nearby, so she could drive there herself. This Aunt had broken her hip and still had problems, and was no longer able to drive on the highways. My Mother's youngest Sister passed away almost 2 years ago, at age 74 from complications of Diabetes Type1 - which she had since she was in her 30's. Now her Husband has Dementia. They have one Daughter who is married, no children, and she has moved her Father into Memory Care in a place that is right in her Town. She sold her Parent's house which was in the City, and a long drive for her.
What I am saying is that I know people who have made decisions and changes for their Parents in order to make it much less stressful for them to care for their one Parent or both Parents. I am not sure if I mentioned this: My Mother is home from rehab, but when she was in rehab for 2 weeks - she had a phone that she could get calls on - but for some reason - she could not call out on it. I kept on calling the Rehab to have someone fix or replace the phone, and also my Mother kept begging them to please fix her phone. So we found out what really happened. My Brother was supposed to order a phone from the Rehab for my Mother to use. Instead of doing that, he had found an old phone in my Mother's house and he brought that in to the rehab. But, we didn't know that. All of that time, the rest of thought that the phone belonged to the rehab. So when a man from the rehab went to check on her phone, he told my Mother that it was not one of their phones, but she didn't understand what he meant. So, on the Monday when my Mother went home, my Brother took that phone back home again. But that is not the end of the story - he then disconnected the new phone that my Mother had in her house - and he connected the older phone that he just brought back with him. So, for the first 2 days that my Mother was back home - she could make calls out. My Cousin had planned to visit her on Tuesday, and bring some pastry, and pick up her meds. She called my Mother on Tuesday morning to say that she would be driving to her house. Now this is the Cousin who had lived close by to my Mother in the same City, but due to her rent going way up, she moved to a suburb and she has a longer drive to my Mother's house. My Mother had been sitting in a reclining chair, so when my Cousin had called her on the phone, my Mother got stuck in the chair and could not get up, After trying for about a half hour, she finally managed to get out of the chair. My Mother is not going to have any help 4 days a week. She will only have one Home Health Aide who will be there for 2 hours on Friday mornings. The rest of the week, she will be totally alone - except for the times when the PT and OT, and the Visiting Nurse comes in. My Mother has some neighbors, but they are all out working during the day. She doesn't know them anyway, and if she did know them, she would never ask them for any help or favors. So, my Mother is going to continue to struggle to take care of herself all day long. To make things clear, my Brother does not want to help her, but he really has no choice. He has his heart set on getting my Mother's house. That is what he really cares about. I know he doesn't care about our Mother. He does not want her to spend any more of her savings on getting more help from the Home Health Aides. But, it is also my Mother's attitude too. She goes along with whatever he wants to do. She has not told him to call me and give me the code to her lock box. Instead of installing a door bell, (my Mother does not have a door bell), he is using a lock box so that the V.Nurse and the Therapist can use the lock box to let themselves into her house. My Mother can't hear when someone is at her door. There is an old-fashioned door knocker on the outer door, but she can't hear that. She has not told my Brother that I should have the phone numbers to call her Visiting Nurse. She has not told him that I should have a key to her house, if anything happens when he goes away to Mexico every month, and when he goes to Florida on vacations. What he does want is for me to drive back and forth each week, to take up the slack. Or to go and stay with my Mother for an unspecified length of time to help her with all of her needs. If I am not good enough to have a key to my Mother's house, then I should not be the one to bail him out. I would love to be able to help my Mother, but since she insists on not selling her house and staying put in the City, then I really can't help her. Now I am going to have to break the news that we are staying home for Easter. We all plan (all my Kids and Grandkids) to visit my Mother around the middle of April and then on Mother's Day. Thanks everyone.

Hi again, sorry, I made typing mistakes - again. I meant that - when my Mother got home she could NOT make any calls out on that phone. So when my Cousin called her on Tuesday morning, my Mother could not call her back. She couldn't get up out of the chair to answer the phone anyway. So, on Tuesday night, my Brother finally changed the phones back. He hooked up the new phone that my Mother had. We don't know what he was thinking. I think he was trying to save money by not getting the phone from rehab - not realizing that the phone would not work. Thanks All.

East.

Would you like to give your brother a break, please?

He DOES take care of your mother. He DOES visit her. He DOES get her phone sorted out. He is obeying HER wish to remain in her own home.

For you to assert that he is withholding services because he's trying to save her money for his own future - it couldn't be, could it, that he agrees that if she won't let helpers in it's a waste of money hiring them - or that his only reason for supporting her wishes is that he wants to inherit her property...

You not only criticise his efforts but also suspect him of ulterior motives no matter what he does. In your eyes he really can't do right for doing wrong, can he.

And, bear in mind, I haven't even heard his side of the story. Only yours. And it's still pretty obvious that the poor sod is pedalling as fast as he can.

Take just this part...

"She has not told him that I should have a key to her house, if anything happens when he goes away to Mexico every month, and when he goes to Florida on vacations. What he does want is for me to drive back and forth each week, to take up the slack. Or to go and stay with my Mother for an unspecified length of time to help her with all of her needs."

If your brother wanted you to cover for him in his absence, don't you think he would have a) given you a key; b) put you in touch with her care team; c) asked you?

He hasn't asked you. You conclude that he is sending you secret signals. Why do you not conclude what is obvious: that neither he nor your mother expects you to be involved?

From your earlier post, it seems that you feel frustrated that your brother does not support you in persuading, to the point of compelling, your mother to move to a facility where you can easily visit her. Other families do. Why won't he?

Because it isn't what your mother wants. That's why.

If it makes you feel better, then go ahead and assume he has his eyes on a fat inheritance. But isn't it just possible that he believes your mother has the right to decide where she lives? - in spite of the considerable inconvenience it causes him.

He gets bad tempered and resentful, he gets things wrong, he doesn't set up services the way you would, he doesn't - I don't suppose - devote hours directly or indirectly to his mother's care every single day, and he won't join in interminable discussions with you. Goodness! - he even indulges in regular breaks. But he is getting the job done. Let him.

sharyn -so happy to hear that the the boys are doing well. That is awesome!!!

duck - it would help you to accept that your mother and sis will not change and grieve the loss/lack of the family that you needed, but never had. It would help you to gain more peace in the situation.

east - good advice from cm

dori - earlier you asked about sig other.This job is in Sparwood, but only a 4 mo contract. He said he will take it if offered. I guess we could hire someone to water plants etc for 4 months and I would call it a holiday. He is not impressed with the company he is with. I could tell stories about it. We roll our eyes over dinner regularly as he recounts his day. He got an offer for a 2 month contract here yesterday with a decent company, but that's a bit too short. He is a safety manager, but will do straight safety advisor if the job is right. Glad to hear that you are getting daily help and getting breaks. Thrift shop are sources of many good things.

guest - awesome boundaries!

becky - hope you are OK

glad - sod will be turning soon!

More snow, even to blizzard level expected over the weekend. Thankfully it is R's weekend here, so he will not be travelling. Feeling weepy, not sure why, (perhaps the long winter, probably CFS/FM as well) went to facebook and saw I had a pm, thought it might cheer me up, opened it and read that my cousin's husband had a sudden heart attack and died while they were in Fla. They live in eastern Canada. She is well over 10 years younger than I am, and so was her husband. They have not had that many years of retirement. I hope one of her kids can go down there and help her return to Canada. Bummer! It has unravelled me a bit. A close very bright friend, younger than me, has some age related memory deficit. We all lose some stuff as we get older, but this has been enough that she went to her doc about it. I hope it doesn't develop into anything more. Oh, the joys of aging!

Take care all. Eighty comes sooner than you expect.

Well, I just talked to the community nurse. She said what the home support agency is doing is "on their radar" and they're trying to gather more information. So I told her a few of the things the workers have been telling me - the big one being that some of them would be glad to work overtime to make sure all the home visits happen, but the agency won't PAY overtime....so where is that money going if they're just cutting services and not sending workers out? I could hear the nurse's gears working, oh boy!

Anyway, she said any permanent changes to the care plans have to go through the home nursing office, and she's been trying to get through to the agency all day but they're not answering their phone! Surprise.

I said I understood the position she might be in, but that I'm not afraid to go to the MLA (our elected provincial rep.) as an advocate, if that's what needs to happen. She said that's definitely the right action, since the funding ultimately comes from the province. She said she'd do some reading over the weekend and get back to me with any information she is able to share, which I might be able to take to the MLA.

I kinda thought my activist days were over! Lol. But this is just making me mad now, not just for mom (if worse came to worse, she still has me), but also for all the people - especially the elderly - who are living on their own, with no other help whatsoever. The entire health care system has this huge push now to encourage people to be in their own homes instead of hospitals or wherever. But then they've privatized half the public system by contracting out things like this, and they're obviously not monitoring it very well!

Ha ha....it's funny, because I was just thinking all this fighting and boundary-setting I've been doing with mom over since the fall (when I joined AC!!!) has made me a lot stronger in general. I find I've become much less willing to just act grateful for what I can get, and much more determined to stand up for myself and the things mom and I need!

golden - I'm so sorry about your cousin's husband. That exact thing happened to my step-grandmother with her first husband, when they were in Hawaii, and I believe only in their 50s.  One of her sons did wind up going over there to help his mom and get (gulp) his dad's body back to Canada. How awful it must be, to be somewhere else - especially outside the country - and find yourself suddenly having to deal with something like that on your own! I hope your cousin has some other family with her very soon.....

I imagine it is the same all across the country Dorianne, politicians make feel good statements about how they are starting new programs to "allow" people to remain in their homes, but in reality it is just a back handed way to dump their care back on to the family because there is never enough money in the home care pot.

I agree cwillie - every time I hear a politician talk about how great it is that more people can stay at home, I think, who the h*** do they think has to do the work? It's the families....and a lot of the time, it's the women, doing yet more unpaid labour! Like women don't have enough unpaid labour to get through in a day!  Plus....my mom worked outside the home and paid into the tax system almost all her adult life - surely to god she is entitled to reap some of the benefits now. 

Edit:  at least some of the money must be there, though.  Because if the problem is short-staffing (plus I hear from the workers that quite a few are quitting because of management problems), and they're just cutting services, where IS that money from the service cuts going? 

Golden, so sad about your cousin. It would be very scary to have this happen. My heart goes out to her. You are so right, I’ll be 70 in 10 years. 10 years is nothing as time passes so quickly.

Unfortunately, cuts from one area are used in another. This is why our social security is disappearing and we can’t count on it for retirement. What I was going to get for SS retirement at 62 is less than what I was told a year ago with the new SS reductions the White House passed into law this January. I may work until I drop, haha!

Sharyn - I do get that part. But this is a private agency that is contracted to the gov't solely to provide home support services. That means the funds have been allocated and the cheques to the agency cut. They will have received the monies from the gov't already. I used to work for a non-profit in receipt of provincial funding. These funds are always paid to agencies in advance, quarterly. So what this agency is doing is cutting services they've already been paid to provide.

Golden, I am lost. Sod turning soon? I must be missing something. AHHHH, first thunderstorm of the year, we need it so badly, winter was so unusually dry!

Sharyn - I agree it's scary how our safety net is disintegrating. Add to that how medicine is keeping us alive so much longer. We stay alive while our minds and bodies deteriorate. We become long term invalids.

For the average income person there is no way to put aside enough resources to cover the cost of such long term care. Families can rally to provide for a while but not years and years. For most that is not sustainable. Medical and personal care costs are escalating at an alarming rate.

This is a social disaster in the making and politicians know it. It would take a massive shift in policy to create a long term, viable solution. The cost would be astronomical, taxes would have to rise... a lot. That alone would be political suicide. So they ignore it or give lip service or rail on about the evils of "socialism". Meanwhile the juggernaut heads our way....

I'm not being pessimistic, this is simply reality. I have no answers except to be vocal about it. Maybe we should all become activists, like Dori!!