The Caregiver & Dysfunctional Families: How are you doing?

Thanks Glad and Margeaux. I do not think her shoes were the cause of her first fall as I think she fell trying to get up off her bed. So her thighs would have been the reason that day. Yesterday it probably was because of her shoe because she was locking the door to her room then turned to walk away when she fell. Because my sister does not want to drive here and grouping errands in one trip she is in no hurry to get her a new pair until her planned time on Wednesday. I am mostly angryy m was transported to the hospital and my sis just took her sweet time getting down here which left my poor m by herself at the hospital. Thanks for letting me vent I am getting ready to go over there so I can get her some shoes.

I will have no problem getting info on my mom Book as they are not restricting that info due to my ms condition and because they all know me so unless my sis restricts the info which she won't do that because she would be up a creek without a paddle.

I am going to have to step back up into taking care of things as it is clear my sis has to put herself first and she will not step down as primary.

It is not a shoe issue... It is a mobility issue. Looking into physical therapy and possibly a walker. Mom wants to put one foot behind the other causing her legs and feet to tangle up which results in losing her balance and falling.

I am going on record that I am not going to blame anymore. Knowingy sisters health, I just have to step up. So I arranged for transportation to and from moms dr appt tomorrow so all sis has to do is meet them at the dr. They provide transportation on Tuesday/ Thursday. All appt will have to be on those days. I talked with the caregiver who saw mom fall. She said she was standing at her door and just fell. I told them to call me first because I will respond quicker from now on. I guess the idea of getting earlier shifts is out for me so I can be more available to respond for my mom.

I am experiencing caregiver burnout and have no one to help. There are several people related to us. But they are more problems than help. They add to the stress and create more issues. I mean really toxic! That is why I feel alone in this. How do you cope with not only being alone, but keeping the sharks away?

Hi Fleming, the only solution is to be very assertive. If you want some suggested language, I said (through email) things like, "It sounds like this is becoming too stressful for you"..."Take a step back from this and get some rest"...These are not heavy handed comments, but toxic people will probably get offended, which is FINE. Let them. If you need to be more blunt, then tell them straight off to stop doing whatever it is you don't like (dropping by, asking nosey questions, not honoring your routine and system, whatever). You just have to be very assertive, and not take any more b.s. If you make some enemies, so be it. I know the "shark" I used to deal with doesn't understand what she did wrong, and probably thinks I'm the one to blame, but that's fine. She's out of the picture, and things are much calmer and more manageable.

SM: My 89 year-old-mother has had balance problems for about twenty years and it has resulted in a number of nasty falls. One fall resulted in her breaking a vertebrae in her neck. She is like the Energizer Bunny, she take a lickin' and keeps on tickin' . Tough old bird she is, and I love her dearly!

After I escorted her to visits with numerous specialists, she was diagnosed with having TIAs (mini strokes) plus paroxymal transitional vertigo. The vertigo is common in adults over the age of 60. It can come and go but it can cause sudden dizziness and loss of balance. There are exercises that PT prescribed for her that help some, plus Mom is never ever without her walker. She calls it "her wheels." However, it is also very, very important to have proper footwear to guard against slipping and or tripping. Perhaps you might want to go ahead and get those shoes and let your sister fume. Although, she might just be secretly relieved if just you go ahead and get them.

Have you or your family ever though about having a shared POA? I don't know if this is something you would want to do but again, perhaps your sister's reluctance and/or procrastination is a sign that she really doesn't want the responsibility that comes with being the POA. Perhaps she is too proud to say she doesn't want this responsibility or maybe she is worried about what others may think if she abdicates her title.


Just my 2 cents...

Fleming: I understand caregiver burnout. My Mom was widowed in 1986 and began to have health issues a couple years after Dad died. As of last year, I moved Mom into a lovely assisted assisted living setting where all her needs are met. I am elated and relieved to say that she is quite happy with her living arraignment. But before this move it was a very, very difficult situation. I had to come to terms with what my siblings would do to help (which wasn't much) and what they would not do. I have heard every excuse in the book.

Early on I found a support group where I could meet and talk with others who were going through a similar situation. The words I remember most from our meetings were: "Those who want to be involved will be there for you and your parent(s). Those who do not wish to be involved will not be there no matter what!" It is sad but true.

Now my husband and I are dealing with his elderly and dysfunctional parents and family. I am often find myself at the end of my rope over their awful behavior. I think it has been more difficult for me this time because they are my in-laws. Hubby's sibs want to be included in every decision but don't want to do any of the necessary work. In addition, they love to stir the pot with their parents and the rest of the extended family. Sound familiar?

I came here to vent and it does help just like the support group I attended all those years ago. As far as getting any help I wish you luck. Hubby and I have had to put up boundaries with his toxic sisters. Should this be necessary with your family then the sooner you do it the better, as there will likely be a strong push back.

Hubby and I have found going solo is often the easier way. If you must go it alone you may want to look into hiring a part-time caregiver to help out and relieve you. I did this with my Mom before she moved to assisted living and it saved my sanity.

Hope this helps you. Hang in there!

Fleming I agree with the others you have to set boundaries and be assertive -to those family members who only give advice and no help you may have to be blunt in what you say they may not like it but they are no help anyway so there is nothing to lose you will learn to set boundaries -it is hard in the beginning but will get easier-just make simple statements-explaining things rationally will not help anyway so keep it simple-you might try asking for specific help-but don't expect any-but you never no-some people are clueless on how to help-maybe asking them to visit for a specific time to free you up-even to take a nap-or dash out to the store or library would be good-but of course that probably will not happen.

Sharynmarie,

How exciting........you'lll be seeing the babies!
Have a safe and wonderful vacation, and can't wait to hear of their progress.

Hugs,
Hope you have your leg warmers, etc. in your suitcase!

The other weather wimp!
Much Love & Light! Margeaux

I knew it. I knew it!

First slight falling out with rehab where, after I'd spent the whole morning waiting for a phone call from the Nursing Sister in charge to tell me when we were going to discuss the Care Plan, the PT mentioned that she had had a good conversation with my SIL. I shot her the eye basilisk, and she said a little defensively that my brother had been there too. I then did a little jig and explained that my brother and SIL were not involved in mother's care, and my SIL had no business to be discussing it with anyone. It seems the PT had been told that "we weren't sure" where mother would be living when discharged. Oh aren't we? For the avoidance of doubt, mother will be living at home. What had happened was that my brother rang this morning asking the PT to call him (why pick on the PT, for heaven's sake?), and when she duly called back she got put on to SIL instead. The PT had been a bit worried because they were talking about moving mother "out of the area" which would be problematic from a care services point of view. Oh really. Not to mention from a my going completely bat-sh*t point of view...

I drew a quick line because the poor old PT (actually she looked about twelve, but that's just me getting elderly) was squirming. I said I was sorry, and this kind of family disagreement must be extremely uncomfortable for the care team, but everyone needed to be clear that mother lives in her own home with me and that I am her primary caregiver. The decision about where she lives next - especially since the rehab team is of the opinion that mother has capacity (?!?!?!?!!!) - is not for brother to make, and especially not for SIL.

Grrrrrrrrrrrrrr…

Well. They want to see how she gets on this week and review the care plan from there, was the upshot, which is fine by me. The PT also mentioned the interesting news item that the referral to her had stated that mother had been admitted to rehab for discharge planning only, not formal rehab; but evidently they've decided that while they've got her they might as well make the best job they can of it. We proceeded to the gym, where mother was hoisted on to a flat bed to practise sitting unsupported and I did the cheerleading. Whoop-whoop! Top sitting, mother! Way to go! Actually it was a bit like watching a bobo doll being patted back and forth between the two therapists, but at least she didn't actually topple. Well, I was impressed, anyway.

Then back to her room where I collided again with the same GP I saw last time, who said that they'd found signs of a UTI from a dipstick. Well obviously - what do you expect when she's wearing a diaper and she's dehydrated? I hoe they are actually culturing that. He reassured me he'd put her on the shortest possible course of trimethoprim, so I smiled and said light-heartedly that that should be entirely harmless and a complete waste of time, then. And quickly agreed with him that we certainly don't want a UTI getting out of hand. [GET MORE FLUIDS INTO HER DUMBO!!!]

Tomorrow I am putting in a few calls. Doctor daughter arrives for a lightning visit on Thursday, here 'til Saturday, and I want her with me on Friday for an urgent summit meeting before these little gremlins grow teeth and turn nasty.

CM, the most nightmarish UTI that mom has had they sent in a culture. I called to check the result a few days later because they had not called me yet. At that time I was told something is growing, so wait a couple of days and check back. So nearly a week later they finally told me the specimen was contaminated. Since that time, mom is catheterized for the specimen. Enough nonsense, let's fin out for sure. We had the same problem with every test, always testing positive. Now I wonder, and asked the doc if they get many false positives from elderly women. You bet they do! It is a cleanliness issue. So, how many times was mom treated with antibiotics that wasn't even necessary we will never know. Thus the catheter for testing.

CM, your brother and SIL are so sneaky. It was done on purpose. I really don't know what's their problem since they're not the one caregiving and doing all the hard work. If your brother and SIL don't like to be bothered by you for funds, then just calculate your mom's monthly cost and just open a bank account which you have access. You keep all the receipts and send it to him monthly. Of course, you would keep copies for yourself. I was getting as irritated as you when I read what they did. And the nerve for him to have them call him and then give the phone to his wife to give instructions. Ugh!! Boy, you have it bad when it comes to dealing with them. {{{hugs}}}

CM- that is dirty pool to do what they are doing. My sis and I have our disagreements but we are always able to come back to reality. Sounds almost like your Sil has a jealousy issue re your relationship with your mother.

OMG CM can't you specify who may have information about Mum. Brother can SIL can not. At least they are doing something with her rather than let her sit in bed like a lump of dough. You may find this insulting but I imagine you as a short plump lady with fair greying hair, jumping up and down so hard your boobs give you black eyes and swinging your handbag like neuclear weapon. Do you still wear a tweed skirt and wool stockings in the winter. Sorry I just could not resist - something to do with having a hen called Alice. How is she by the way? Emjo could make some good broth for Mum!!!!!!!!!!!! or maybe Ladee M can go out and shoot one of those wild boar in Texas and you can have a pig roast to celebrate Mum's homecoming. G can stand outside all day and turn the spit. Sorry i get silly when i am upset about something and right now it is about whether I should take the Protonix I have just been prescribed when I like the Famotidine I have been on for years." Velly much better for you" said the nice Indian Dr The short plump lady GI said "You need this you have gastritis, it's probably age related" Hubby says "Never mind what the drug companies publish the FDA makes them put those warnings in their literature"?

Music made- thank you for responding. I wish it were that simple but I think it is more that my sis does not want to give up her weekend time... We have been through this before where she does not want/ won't come down to hep on Saturday/ Sunday.

Oo Veronica - that's a nasty one. On the one hand you've got a drug that's working, why fix it; on the other… is it velly much better? Could be. But I wouldn't blame you for not wanting to suck it and see.

Yes, the FDA does indeed make them include the warnings - I wonder why??? I wish I could be more confident that it's just "health and safety gone mad!!!"

All very easy when it's not you who has to undergo the side effects, isn't it.

Alice passed on, I'm sorry to say, by the way. Literally dropped off the perch one night in November. She was incredibly old. She'd had a great life, never lost her iron grip on power, never got ill, and died in her sleep. I don't think it gets much better than that for a battery hen so there's nothing to regret, but I miss her terribly. Gardening will never be the same again.

Thanks to Book and everyone for the moral support - honestly, I don't know what I'd do without it. It's so hard not to get paranoid about all this - you start wondering if there's some kind of sinister conspiracy going on to wrest your mother out of her home and into some ghastly Stalag somewhere where you can't watch out for her. But there isn't. Brother and SIL have problems that I cannot understand because I don't know what they are and they're not telling. I just need to leave them to their worries and focus on the business of keeping mother on track to recovery and a safe return home. But my God! - they don't half make life harder. Ugh.

CM sorry about Alice 0ne of our craft ladies is a farmer and one day she open her large bag and had chicks-live chicks in it-but she makes the most delicate hand work and art work and makes all her own clothes-she started sewing at age 4 in Germany.

Book, on the money question it is time I gave credit where it's due. Mother's care is free of charge. I appreciate how alien that sounds, and believe me I count our blessings every day; but this is the upside of the NHS - the downside being a) tax rates in this and most European countries, and b) the sheer unsustainability of the model - we're clinging to the tail end of universal health care provision before it crashes and burns.

Meanwhile, though, she is benefiting from rehabilitation in a dedicated unit that offers the full suite of therapies. She has her own room, everything included, and it costs her not a bean. I happen to know, from having looked at private care options, that the fees would be upwards of $1900 per week if she were self-funding. The salve to my conscience is that she has paid her dues for this, over decades, according to the social contract she was asked to sign up to in a democratic society. And the other comforting thought is that the cost of keeping her, not to mention the pressure on bed space, ought rationally to give the care team every incentive to get her home as soon as they safely can.

So there: I have publicly thanked the NHS and I am not an ingrate. But you can be deeply grateful for something and still think it is a crazy basket case which other systems should not be encouraged to emulate.

CM, I was trying to figure out why your bro and SIL are doing what they're doing. If it's not money, then what? You have a good health coverage from your gov't.

Veronica, as I was reading your post, I couldn't believe that was you talking. I've never seen you write 'silly' before. My mouth twitched a bit as I read it. I'm not familiar at all about those meds you mentioned.

Book I've been driving myself mad trying to figure that one out, which is why I think I need to drop it, forget about it, and not worry about background issues I can't hope to understand as long as the people involved won't discuss them. My best guess is that my brother feels guilty that he doesn't do more for my mother, my SIL is trying to support him, neither of them can understand why I'm not grateful for their "help" (?!?) or, in SIL's case, more respectful of her professional healthcare background, and both of them regard mother as a problem to be solved rather than a person with individual wishes. None of it is helped by mother's being temperamentally incapable of expressing her own preferences - she actually does force people to make decisions for her, and expects us to guess at what will make her happy and tie ourselves up in knots trying to make it happen. In that respect she adds BPD fun and games to the mix; but it isn't something that can be helped or that anyone can be blamed for. I'm given to over-thinking things anyway so I'm just trying to stay focused on aims and worry less about the rest of it. The stress doesn't do anyone any good.

Got it. They have their own warped reasoning.

Sharynmarie,

O.K., your're so wonderful, since you don't want to play the blame game.
But please do not minimize the importance of proper footwear. Evan I am
realizing that sometimes with aches an pains in the back, if I want to continue my walks, my old tennis shoes do need to be replaced for proper cushioning.
In your mom's case, others such as yourself have to be her eyes in this department, since I'm not sure whether she is expressing this to you.

I understand you taking the high road about your sister!

Hugs,
Much Love & Light! Margeaux

Countrymouse,

That's awful having to go through all of this. Your SIL is a medical professional?
Oh my! She flunks on that end big time! You're right.....that your brother feels guilty, and instead of accepting that he's not involved, he'd rather participate to create more drama! Best not to sweat the small stuff, if that qualifies as such.
Interesting too, to hear what is done in rehab for stroke patients.

Hugs,
Much Love & Light! Margeaux

Margeaux, not exactly - she's a retired dietitian. Who thinks she knows better than cardiologists, geriatricians, neurologists and the whole medical Uncle Tom Cobley and all put together, believes sincerely that there is nothing that can't be put right with exercise and prebiotics, and goes on at dreary length about the flaws of the Medical Model. On reflection, I've concluded that what she actually is is delusional. Which would make sense in someone with well-established bipolar disorder, which she definitely has.

The sad thing is that she was seriously ill last year and I imagine that her employers were very relieved that she was the right age, more or less, to "retire." On the other hand, where does that leave her whole sense of identity and self-esteem? In dire need of a good miracle-working project to get her teeth into, that's where - so we get lumbered with her. Oh joy.

Mother was very depressed this evening. Also, I have to say, pretty mutinous with it and therefore at her most annoying. I'm keeping it firmly in mind that emotional lability, and especially anxiety and depression, are common after stroke anyway even if they weren't there to begin with, which they were; so I gave her a big hug, fed her a yoghurt, and stopped trying to insist that she took her own tissue out of the box instead of waiting for me to hand it to her. There's nothing wrong with her right side, but she's miserable and exhausted and doesn't want to make the effort. We can try again tomorrow.

CM, there are definitely sinister plots by siblings, I can attest to that!

CM, we need to have a chat! My ts1 is a licensed professional counselor of the mental health variety. She too thinks her background is best suited to take mom to doc appointments. In 2013 she visited with Mom probably five times tops. In 2014, towards the end of the year she got a bit better, maybe five hours a month. I got the nasty email from her last week about how she knows geriatric pros, kniws about antipsychotic meds, anti depressants the entire gamut. The one thing she left out is she does not know her mother, her behaviors or about delusions exhibited. She has only asked about chronic D that Mom has had for years so asked about it. What she know of dementia she learns from reading, though has not done much of that. And the topper both ts's think mom would be best served in a facility. Shows how much they have read. They are completely and utterly delusional. Sometimes I think about just letting them have their way and deal with it on their own.

Tonight Mom got up, came in the living room, worried about me and where was I. She then told me I am not me and what did I do with her?! Then ts2 will stay the occasional weekend, or split time with an agency caregiver. According to ts2 everything is always wonderful. Then I find out from the CG that mom has refused to take her meds, they have to call ts2. And it takes quite awhile for her to call to talk mom into taking meds, etc. And she thinks a facility will be easier?! What planet is she on?! Mom has always been paranoid, but now it is off the charts.

I am right with you CM.

Margeaux-I am minimizing the situation, just accepting that my sister will not be a support to me on the days I work when it is her weekend and I will have to be more vigilant. No point in blaming or criticizing because it will only make me angry all the time.

Our monthly caregiver's meeting is on Saturday, the 17th. Since I'm off that Saturday, I think I will attend it. They sent me an email alerting me that the topic is going to be 'hospice.'

Or maybe I shouldn't attend. It might bring bad memories when my mom was dying. We tried calling the hospice, they said that they cannot come without a referral from the doctor. We tried calling the doctor, left messages, and was told that the doctor doesn't do home visits. That we need to bring mom to the clinic. Mom. Who at this stage was in severe pain when we turned her on the sides to change her pamper. Mom. Whom the EMS told my SIL on the last ambulance trip to the ER - that we shouldn't be putting mom thru the ride (rocky bumpy road). And because she was obviously in pain on her sides, we all agreed - No Ambulance ride. No Lifting her off the bed to the gurney - then the gurney to the Clinic's exam table - just so that the doctor will take one look at her - and say - yes, she needs hospice service. Even now, as I think about it, I can feel the depression coming.

No, I don't think I will go. I will send an email back declining. I'm not ready to hear how hospice worked for others. And we couldn't get it for mom. I remembered from reading here, how sometimes those dying would have suffer with pain. I was so stressed at the time of mom, asking my siblings if mom was hurting. So far, only turning her to the sides - did she show pain in her face. I'm so sorry for hurting her - I just didn't know any other way to change her pamper. Darn. There goes the tears....