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I have just phoned social services to see what help might be available for my Mum, who has been living with us for the last 8 months. After being on hold just long enough to raise my blood pressure, I was told everything is on the web-site go and look at that. I politely said I had already done that without adding I found it excruciating in it's abysmal layout and infuriating, in it's lack of information and self congratulatory tone. Wish I had spent the time having a quiet coffee, even repeatedly poking myself in the eye would have been less annoying.
Sorry more of a rant than a whine. Normal service resumed.
Just dried Mum's tears and settled her back to bed for an afternoon nap.
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Oh you didnt do that right did you first you tell them you dont have a computer that is working and cant afford to get it fixed because you dont get paid for looking after mum. Ok OK so its a lie - do you think they dont lie to you?
As you missed that trick (bet you remember it next time though) you tell them that you cannot understand the myriad of informaiton that is posted there and can they guide you through it so you can bookmark it for ease of reference next time you need it. Ask them what physical support emotional support and financial support is out there and are there any grants or charities that support your particular area - if you dont ask .....you wont get that is for sure.

If she/he is offish with you ask for an appointment to speak with someone who is more knowledgable about your needs or who is more confident in guiding you - it's a bit like saying listen you moron I am more than capable of looking at a website if was arranged in any intelligble order but given what you've told me I imagine you devised it - but without actually being that rude.

Above all be persistent we use a term called cracked record over here I imagine you may too - it's like when you are listen to your fave record and it starts Goodbye Norma Jean I never knew I never knew I never knew - just keep repeating exactly the same words - NEVER say sorry I dont understand say you are not being clear I dont understand - ALWAYS put the blame in their court.

You can always ask to speak to a complaints manager or ask them how you go about registering a formal complaint regarding the service you are receiving - that means they will have a host of paperwork to do reports etc on why they left you unsupported....in the end they give in because it is quicker to actually give you the information you need.

Remember this ...I use it now and again and it is effective - I know you use it regularly so it may be simple FOR YOU but I am struggling and my mother's support needs are so great I dont have time to go into every tab/link/external link/advert so please help me, before I just walk out of the door and leave it all to you while I write to the (name the biggest most influential local press office) telling them exactly how difficult YOU make it for ME to care for my mum's complex needs
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Jude, Thanks. some good ideas in there. I think I will look into paying someone to do some of the household jobs that take up so much time, then I can spend it with Mum myself rather than paying someone to sit with her.
I have only managed to get out of the house on my own three times since Mum came and they were to sort out POA etc. Sometimes I'd like my peaceful life back and I have a scream or a cry or a rant but most of the time I feel O.K
As for Josh Groban, and that song, sometimes I'm wringing out the hankie and sometimes ready to take anyone on. Love to know other peoples inspiring music choices.
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Jude you got it wrong. "Dr I am positive you are a very annoying person"
To the caregiver with catheters or at least with loved ones that have. Sometimes irrigating the bladder with Ascetic Acid helps keep the UTI's at bay. now before you rush out to the pharmacy it has to be prescribed and made up as a sterile solution by a pharmacist. so a call to the PCP is in order.
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Jeanette I though you were putting that pool in.for your son's wedding so you
could drown the bride.
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Veronica I did want to say there we are then which is an acronym for TWAT funnily enough we will be seeing him next tuesday and I did enjoy saying See you next tuesday then and nmo I am not about to explain that it is far too vulgar xx
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Jessie and fregflyer. Glad to know its not just me. Also good idea, maybe I will start diluting the liquid and switching out the fabric sheets same box different sheets. I already hide the all natural dish soap. She thinks if there's no bubbles you have to keep pouring. I have also stopped trying to explain the concept of high efficiency machines and concentrated soap.
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Katie, mom has had 3 known UTI's in the past 2 years. They where doozies!! I've been researching around as well as talking to her Hospice nurse. Sleeping for 24 hours isn't that unusual... every morning when I wake up I have a pit in my stomach.... wondering :/

Susan :( I hate this time of life also... does your mother know this lady passed away (bless her soul)? Personally, I wouldn't like the idea of mom close to people who may not be there in the morning... it would scare the bejesus out of me and I would be plotting my escape in fear I would never get to leave there!! (((hugs)))

Veronica!!!! LOL Your comment is exactly what I meant ... you are such a witty young lady! Don't think I would actually drown her but I'd love to BOP her in the head with a stick. In all his life I have never seen him act this way. Normally he's a womanizer who could care less if they came or went. This girl has turned everything around and not the good way. Really, this has me quite concerned but I simply cannot take on another form of stress right now, not if I want to make it through this alive.

For those of you following my "pool adventures", well, Houston we have a problem. Seems like the truck broke down around Denver, CO. They've been trying to find another trucker to "rescue" it for several days now. Customer Service has no idea how long this could take. She mentioned I could call the shipper and put in a claim... what does that mean???? I asked her if it meant my pool wasn't ever going to show up or it would be several more days? She had ZERO clue..... Waaaaahhhhh
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ive been watching some one gallon cans of jalapeno peppers at the sav a lot that were marked down to 5.89 . of course id like some to can with beets later on . stopped by this evening and those one gallon cans were 2 . 79 . sh*t fire ( literally ) . im the proud owner of 5 gallons of pickled jalapenos . i figure one pepper would be good flavor in about anything a person could can up . tomatoes ? potatoes ? green beans ? beef ? beets ?
thinkin bout giving the crew of mexican bricklayers out at the farm a gallon of em but theres no way they wouldnt think i was being a sarcastic a** . thats the problem with being a sarcastic a** . nobody takes you seriously when you try to be nice ONE time .
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Well folks you don't realize how dysfunctional your family is until someone dies and you are forced to try on be on the same page about ANYTHING!!!!!!!!

Should we do an obituary? Should we not? Its not illegal anymore here to not do one so no one seems to care one way or the other (except me) but what do I know? I composed it, e-mailed to everyone (imagine crickets)
No, no one cares, or should I say no one wants to make a decision.

We decided on a nice plaque for a park bench for my Mom. Guess who composed what that would say?

I guess I should not be surprised. But it saddens me. I thought for a stupid second that maybe my Moms death would unite us all, angels would sing, harps would sound........ Who was I kidding.
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I'm sorry, Gershun, how depressing. I got roundly told off by a friend of mine today for being critical of my brother - she said he had to deal with things in his own way and it wasn't for me to say what he should do. Actually I nearly hung up on her - but then I realised that she was clumsily trying to stop me feeling upset about it, so I let it go. I suppose there is half a point, there. But I still think we're entitled to be unimpressed that our siblings can't even shift themselves to sort out proper respects.

Well, if no one else is going to come up with some sensible ideas at least you should get a free hand to do what you know your mother would appreciate. And you do know best, after all. Silver lining? Hugs.
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Thank-you Countrymouse. Sometimes just typing my thoughts on here is enough for me. A form of purging you might say.
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Well, Round 3 of the fight to keep mom in the NH until she regains her strength occurred today, and this time, I caved. I told her I would talk to the physical therapist tomorrow and see how close she is to getting released, and if at all possible, we would see about getting her home and continuing therapy there, since they said they would release her with 3 weeks of home therapy.

My big concern is making sure we don't get her discharged against doctor's orders, because that will lead to a huge mess with her new doctor and Medicare. The last thing we need is a huge NH bill to pay because we pulled her out against doctor's orders - I would assume that Medicare might refuse to pay if we did that. So I told Mom that if the doctor and therapist are not ready to release her to go home yet, I will start spending my days up there with her and will just bring my laptop so I can work while I'm there.

Just when I thought things were going fairly smoothly....
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Susan, you are a 5 gold-star daughter.
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Jessie, indeed!
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Susan do try to stand firm darling - I know its hsrd but YOU have to have some time too so you can recharge your batteries xxx You're so much better than I am
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Thanks ladies - went to see mom this morning and talked with the PT folks and got the ball rolling there. They will talk with the social worker and then make recommendations for discharge to the doctor and so on. They want to come and do a home evaluation tomorrow with Mom here so they can see how she functions inside the home - the hard part is that she will have to go back to the NH after the evaluation, and I expect that's going to be a rough patch for both of us.

Have to hop off here now - work is really busy this week and now I need to make sure the house is ready for tomorrow.
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I am so scared today...Mom is showing signs of delirium again where she is agitated, seeing things, and clawing at the air. She was fine a week ago...even a few days ago. The doctor in the rehab nh. saw her today and did prescribe an additional antibiotic. All her vitals are fine and there is no sepsis. They think it is from the UTI..... This is the 4th time in the last year of this type of intense delirium and it scares me to no end. She can get pretty agitated and I had to stop her from knocking over a table. It comes on and then lasts 2-3 days...then she sleeps for a day and goes back to normal. This is sheer hell and I am terrified it won't stop one of these times. I don't know how I am going to get any rest at all tonite..I feel like crying my eyes out but will try to remain calm knowing she has nurses looking after her.

Susan, just make sure that you keep telling your Mom that she will be coming home, that it is only temporary and that everyone is just getting ready for her to return home.
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Katie that sounds just like a UTI - the docs told me it is almost impossible to prevent them. A lot are caused by faecal matter getting into the urinary tract and if your mum gets loose periodically then even if you clean her thoroughly you can still find that there is some trace left. Wiping from front to back is fine when I do it but if mum gets her hands in there anything could happen sadly so dont beat yourself up, don't be scared it is a phase she is going to go through again and again and while it is easy for me to say because I am not going through it right now (it was my turn three weeks ago) it does get better xxxxxx chin up you
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Susan - You are so wonderful. Pls don't bring mom home early. This is one of few Respites you will get. I've had 8 wks off in 5 yrs; due to hospital & rehab stays. She's being well-cared for and it's temporary. It's not like you're leaving her in a dungeon. Just tell her, she needs to get stronger for a safe return to home & her release date will be here before she knows it. Mention that you need some time to get the house ready to accommodate her new needs so she'll be comfortable.
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Mom is quite possibly coming home on Saturday. I appreciate the thoughts and advice not to let her come home early, but when you're on the phone with her every day listening to her sob, knowing that she could probably make it at home, it's a tough row to hoe. She was only about 9 days away from her release date, and had made huge progress in therapy with her walking, and they will release her to come home with some therapy here in the house, so it's all good. I didn't get diddly squat done today as far as housework, because my work for my clients was crazy busy, but I'm headed off to bed shortly and will get up early and tackle it.

Trust me, the selfish part of me would like her to stay there so I can get a break, but how much of a break is it, really, when I have to be up there every morning and evening to visit her so she doesn't get too depressed, and spend the rest of the time working? At least if she's home, I'm not running back and for the to the NH..and she can get the same therapy help here she's getting there, and she'll be happier and not calling me crying and depressed.
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Susan, remind me, is your mother actually being treated for depression? If it hasn't been considered before I think it would be a good idea if it was now. This may not be anything much to do with her being away from home; it could be a new symptom in the wake of her recent falls or more specifically whatever caused those. I agree about totting up the stress involved when you compare having her at home with running back and forth to the NH and fielding miserable calls in between, but how are you going to manage work if she's at home and still crying? Just a heads-up, I don't mean to depress you further. If you do think her overall treatment warrants a thorough review, I'd let the NH keep her for the full allowance simply to give them more time to do it.
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Thanks CM - she's never been diagnosed with depression, but due to our family situation, I suspect she's lived with it for years - probably decades. When she is home, she is relatively fine, but goes through highs and lows. At this point, I just want to get her back home and leveled out on the new med regimen due to her recent heart issues before we jump into anything else.
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Susan are you able to monitor Mom's B/P etc when she is at home. If you can't do that it is best to let her stay a little longer. Will you be able to get her to do the exercises when she is at home on the days the PT does not come. She is very demanding when she is away is this likely to continue once she gets home. have you talked to the staff about the crying? Does she do it all the time or just when you are there or on the phone? Can you try going once a day one day and see how she does. I would go in the evening and tell her you won't be able to come the next morning. that way you can comfort her before bedtime and not leave her upset. so many patients seem to think they will be better once they get home and fixate on that but it often just does not happen. Think about it.
it is a pain running back and forth but at least you can get some work done which is essential. Could you do that with someone pitifully demanding attention the whole time. I know you love her and feel she will be better at home. It may make her feel better as few enjoy hospitals and N/H especially when they need a lot of help and like to eat when they want to not when meals are served.
50 years ago hospitals served early morning tea, breakfast, mid morning coffee, Lunch, afternoon tea, dinner and a late night milk drink in the UK so you never had to wait till 8-30 for breakfast when the nurses started vitals and meds at 5 am.
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Susan I dont know whether its an option but could you engage someone for just a few days when she initially comes home to take the brunt of the burden from you even if it was only to handle mornings getting her up washed dressed breakfast and sitting with her - then at least you would feel more able to cope than I fear you will if you dont get help hun xxxxxxxhuge hugs sweety
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Susan, the nursing home might make recommendations for home PT and perhaps also someone to help out with bathing etc. for a little while. If they don't, you could ask about this. Sometimes the same agency they use will cover all those people for a few weeks.....
My Mom is doing somewhat better today for what it's worth for the mention, the delirium seems to have lifted and she is not agitated this morning. What a relief. I am always afraid that she gets so scared seeing people that are not there and might try to get out of her wheelchair or bed when this happens and she cannot stand or walk and break something. Day at a time.
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Thanks all - Mom is set up already with home PT and a homecare nurse for a few weeks to get her going in the right direction. I honestly think the depression and confusion will be somewhat alleviated by being home - the confusion is going to be ongoing, I think, but I don't think it will be as bad, because she'll be home. Her confusion revolves right now around "when can I go home" and "how are the animals" - so once she's home, those two issues will be resolved. We'll see what happens. Found out Medicare will *not* pay for her incontinence briefs (finally found some that fit - YES!!), so that's on me - oh well - it was nice to at least *think* about having some spare money for a while, and I know they won't pay for a caregiver, but I am investigating other resources. If we can get her approved for Medicaid due to her huge medical bills, there may be some options with the waiver program.
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Susan what concerns me is that the tearfulness and panic she seems to be expressing could be something new going on. If TIAs and heart issues are on the agenda, so could acute depression be - and if that turns out to be true she's not going to cheer up just because she's home. I know I'm sounding like the Trump of Doom, apologies, but this might be a different kettle of fish from longstanding personality issues. You can get away with low dose SSRIs even if you have heart disease, I know; but isn't she seeing a neurologist? - I think there are better alternatives, why not ask what he'd recommend?
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CM you.re not being the Trump of Doom hun Mum has depression and the antidepressants make her much better - well much better than she is without them lets say
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Same with mine, Jude - worked just well enough to stop her going into a complete tail-spin of misery. Not that I expected them to turn her into Pollyanna.
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