Generation swap
 

It seems there are a few of us Dwellars finding that they have become the "responsible adult" in the relationship with their parent(s). Rather than hijack wolf's thread I thought I'd start a new one and we can all pile in here.
I'm having trouble keeping up with my mother's deterioration. From being able to cope at home on her own with support in early July with occasional bouts of oddness, she has now progressed to being totally confused and delusional virtually all of the time.
She moved in early July to rent a house nearer to me but is now incarcerated in a hospital environment which seems designed to erase all sense of self, all awareness of date/time and much else besides. Not a good place for those with incipient dementia.
I knew the move might cause a deterioration, but am taken aback by a) how fast it's going and b) the appalling slowness of bureacracy in getting my mother to a nursing home where she might improve a little, or at least be more comfortable.
And, there's the practical stuff to deal with ... cancelling the house-rental, dispersing her stuff, deciding what things she will have with her in the home ...

It's beginning to happen for me all of a sudden.

Last month my mom found out that she has chronic kidney disease from all the prescription pain medication she's been taking for her joint pain. So her doctor is adjusting her meds. Hopefully that will work and she will be able to bear the pain without destroying her kidneys any further.

My dad, last week and this week, has had intermittent episodes of numbness and tingling over his whole body. Doctors put him on blood thinners while he waits for an appointment with a neurologist. They don't know yet what is wrong, but suspect TIAs, which are a kind of temporary mini stroke. Hopefully the blood thinners will prevent a real stroke from happening.

They are in their late 60s and have been extremely vibrant and active their whole lives. I hope this doesn't slow them down too much.

Serves me right for saying "there's nothing good that could happen at today's visit [to my mother in hospital-limbo]". At least she smiled a couple of times last week.
This week she swung between being frightened of her delusions (about firebombings and mortar attacks that have taken place or will take place), being frightened of the fact that she cannot determine what is delusion and what is reality, being frightened of staying in hospital because of the impending firebomb attacks, being frightened of staying in hospital because it's boring as hell, and irritation at me for not understanding. With a few pleas for us to go out, get out, go to the cinema and go for a good meal in between.
Meanwhile, the doctors in their infinite wisdom seem to have prescribed a calmer down (haloperidol) which is Bad For People with Parkinsons (did I mention the Parkinsons disease?). My mother has had a series of falls (did I mention the two broken arms, in two separate falls, since hospital admission in late July?), so what she doesn't need is an increase in Parkinsonian shuffle and Parkinsonian poor balance from a casually prescribed drug.

I don't figure I can bring this thread down any further, but what this makes me think of is the fact that I'm one of theose people who got ƒucked up because the parent they lived with was NEVER a responsible adult, thus was forced to be the emotional "parent" figure, thus never had a normal childhood, thus became an ineffective adult because of never learning how to relate to other people normally. Have a nice day!

Hugs, Flint ...

Oh been there, done that, having my childhood RFN kthxbai!

...although I think I can be a reasonably effective adult when I need to be, I'm just so bored of that role....

Hang in there limey, sounds like you're doing your best.

Both my parents married younger spouses after they divorced. I hope that works out for me in the end.

My dad did that and the stepmother died first (fuck cancer!). So far, Dad is demented but running on his own little rails at home ...

We're in the parent the parent mode here as well... fun not much.

Yeah. Apparently this boredom continues until death. This terrifies me... I can't wait for the dementia to settle into my brain, so I don't know I'm bored anymore.

If only it were that simple, Perry!

I can't tell if perry was attempting sarcasm or is depressed....

Me neither. Sarcasm is OK - you have to laugh. Some of the time I'm wishing for my mum to be completely engulfed in dementia so that she is unaware of what's going on. Then I feel guilty about that. If Perry's depressed then I'm sorry to hear it ...

...and I can't tell if my mom's demented or depressed. She'll call to tell me the same story three times in one day, and when I say "you already told me that" she responds with "well sorry, I can't remember who I have and haven't told."

I think she's just lonely and bored.

Make a check list mom. And get a hobby.

get mom on teh cellar

My brother and I were just talking about our Dad the other day. He's starting to show early signs of demetia such as being forgetful, repeating himself and being a bit unreasonable about little things.

I'm not sure how we'll handle it if he progresses while he's still fit and healthy physically as he is now. He has his wife, but I suspect she'll leave him if he goes downhill too fast. Nothing against her, but she just wouldn't be able to cope that's all. I think there's a good chance we might move up to the farm and care for him there. Particularly if Dazza can develop his business enough that he can run it from home. It's a big conundrom for us all though. There's no way we'd be able to get Dad to stay put in a home or anything like that. It just would not happen. He needs the outdoors.

I really empathise with those of you caring for your parents now. It's a really hard job and it seems to bring nothing but heartache all the way around. All I can say is, they're lucky to have such wonderful sons and daughters as you.

Having just ripped a physician's head off and shit down his neck for having placed my mother on Haldol (it's even worse for elderly, diabetic women in heart failure, kidney failure, and with a history of deep vein thrombosis, among other things) ... you might try to have a quiet talk with your mother's doctor about extremely low doses of Risperdal (risperidone) 0.125 mg two or three times per day is the dose they put my mom on and it appears to have helped.

Oh Wolf! Thank you THANK YOU :notworthy . I'mma gonna chat with the doc today anyway. Why is it that they don't seem to know their own business?

This is where I'm at today. After an emotional rollercoaster week of "yes she can move soon"/"no we need you to jump through more and ever higher hoops first" my mum is moving to the care home on Monday. Initially to a shared room: she'd prefer her own room, but a shared room in this home is far FAR preferable to the hospital ward she's on now.
So now I'm making a list of the things I must collect from my mum's house to take to the home. And wondering how I'll have the nerve to sell or give away the bulk of my mum's possessions. I don't have the room to store them, and I don't really feel I have the right to get rid of them. And no, I can't ask her about it because most of the time she lives in a delusional world where terrorist attacks have happened and/or will happen later. When I have a conversation with her I'd rather it was more pleasant than "I'm getting rid of your stuff. How'd you want me to do it".
I never thought I'd be delighted at the idea that my mum is moving to a care home, but I am, along with being appalled and heartbroken in equal measure.

Yes, that's a tough transition. The problem with most care facilities is they don't have room for personal "stuff", beyond daily necessities like clothes and toiletries. Kind of a stark/sterile environment. :(

Not too stark, actually ... the building used to be a hotel (built around the turn of the 19/20th centuries, I think) and the rooms are all a little quirky. In fact, when I first started visiting this island it still was a hotel and many a merry night and happy Hogmanay celebration did I have in the bar!
It's not ideal that she'll be sharing a room as that means there's less room for her stuff, but all the same I think I'll be able to install, for her, her 1920s bedside cabinet, a bookshelf with a representative selection of books (not that I'm expecting my mum to read them, but books are most definitely a comfort blanket in our family), a dozen ornaments and a couple of pictures.
The layout is OK, there's what could turn into quite a cosy private TV corner for my mum, if she'd rather be on her own (it's what she's used to), in spite of sharing.
At least it won't be a 3 hour trip each way to visit her any more ...

Oh, they know it, it's just that Haldol's a lot cheaper.

Well, there's one good thing about having both your parents die by the time you're 40. I miss them terribly, but at the same time, I'm grateful that this particular role-reversal thing is over for me.

Still have my husband's dad, but at least he's got a sister to help . . . in theory. In reality, she won't be much help at all. He's 78 and just this year been starting to show signs of impending doom.

You couldn't make it up.
So last Monday my mum is moved to the local nursing home - a mere 20 minutes drive each way instead of leave home at 10am and return at 8pm to visit her. Oh bliss!
On Thursday the home has an outbreak of norovirus and quarantines itself. She's never lived nearer and I can't fncking visit at ALL.
And from no privacy at all in the hospital, she's been confined (as have all the residents) to her room, from which the room mate was moved out due to my mum's very restless nights.
I bought a postcard at the start of this whole sorry episode - "This would be funny if it wasn't happening to me" [and my mum].
:(

Here lately things have been pretty hectic. My mom has to get a monthly injection in her eyeball so, according to the retina specialist, she needs to prevent her from going totally blind. My mom wholeheartedly support this doctor in this endeavor (along with a slew of other old people).

Anyway, she had a reaction to the shot this last time and she temporarily lost her sight for a few days - minor to the pain she was having. Anyway, prior to the injection she was already having some problem with that eye and we expressed our concern about it. The doctor assures us there shouldn't be a problem so my mom receives the injection. Everything goes well until that evening when the pain meds wear off then everything goes to hell. Severe light sensitivity, total blindness in that eye, and pain - lots of it. Can't even get ahold of the doctor. To make matters worse, she can't get hold of me because the construction behind my house knocked out my telephone and my cell phone went on the blink. Luckily, for her, she had some people on speed dial and they came to the rescue.

By the next evening the pain was gone, the light sensitivity had subsided to a bearable limit and she was getting back just a little bit of vision.

I got her an appointment with the retina doc on Monday and we went in to see her. Then she set us up with a battery of tests. So for the past two weeks I have been taking her to various doctor appointments, labs and xrays to try and determine why she had this reaction.

What doesn't make sense is we had originally expressed our concern over the injection because of the existing condition she was having at that time. So when we asked the doctor about it again she stuck to her guns and decided my mom had some unknown infection that caused this to happen. Okay... if so, what's the difference? There was an existing condition.

It all comes out after further questions... she can no longer take the old injection because her body had a reaction to it. The "new" injection will cost $2k per.

So, my sister calls me up and proceeds to chew me out because I wasn't available and insists she would have been there to take care of her needs. I'm like... "okay, not a problem here. I can fly mom first class and pay y'all's first months deposit on your new two-bedroom apartment. I'll even throw in a case of Campbells Soup. All you need to do is take the 60-80 hours off work each year for various emergencies and medical appointments. Think you can do that? I'll have her there in a couple of weeks. But hey, I gotta go right now 'cause I gotta bring mom to the docs and have that chest xray, so give me a call later. Love ya, bye."

Funny how the tune changes.

Frustrating at times, but old people can't help they get old.

Why don't they ever listen? momwolf is essentially cognitively intact, but that doesn't make her sensible in any significant sense of the word.

wolf: momwolf, you really need to keep more physically active, because that will keep the fluid from building up in your legs from the poor circulation ...

momwolf: that's not what causes it. You're just being mean.

wolf: momwolf, you can't use the heating pad. It looks like you have a burn blister there on your leg.

momwolf: That's a bruise.

wolf: No, that's a blister. You can see it.

momwolf: Stop contradicting me!

That is such a good description of my mum, too, wolf (at least when I last saw her a week ago :( ). She still plans to:
live on her own
have her two dogs move in to the nursing home
knows the names etc of friends of friends referred to in correspondence I read her
but didn't see that my having moved some of her belongings in to the home had a ... significance ...

Pete stopped in to see Dad this morning and was on the receiving end of a completely crazy political rant about our need to start nuking Afghanistan, Pakistan, and "that other country over there." He's reading Tom Clancy and completely missing the bit about his books being fiction. JFC!

Have you ever handled your Grandad's cock & balls?
I have.

I'm sure this will seem tame to people looking after their parents, and anyone with kids. But I didn't have kids for plenty of very good reasons!

Anyway.
So.

Mum & Dad are away house-sitting. Grandad has diarrhoea.
I've been over 5 times today.
Cleaning. Washing, drying & ironing (Mum irons his pyjamas and underwear). And I've showered him twice.

I'm not trying to make out I am a saint. What would I rather do, shower my Grandad or have him sit in shitty pants all day? It is tough though. Lifting his cock and balls out of the way so I can sponge all the shit off.

Sorry. That sounds vulgar.
But I was there in his very hot bungalow, sweat running down my nose, picking up soiled towels and underwear and just wanting to say, "No! I didn't sign up for this!" but of course I did. This is part of being family. And you don't look disgusted and you don't resent it and you hold your breath because this is Mum's Dad and she loves him as much as I love my Dad.

Massive kudos to those who handle this on a more regular basis.
This has been going on since Friday. Mum comes home on Monday.
I just hope I don't let him down too much in the mean time.

Oh SG, hugs to you, and big kudos, big time kudos!
Make sure he drinks plenty (tea, squash, anything at all, but lots of it).
Make sure you wash you hands every time you touch Grandpa - or you'll get it too. There's lots of winter vomiting virus about at the moment (don't ask me how I know, you KNOW how I know!).
I've done this job (as employment) but it's especially tough when it's your own relative.
Hugs, dear. Hugs [slinks off to wash her hands!].

If I have, I'm managed to repress it.:)
I've had to clean up a lot of kids and frankly my Mom when she died but no old guy ball handling yet.

I would rent a power washer with a high pressure hose. No touching needed but gramps may want to pucker a little if he doesn't want an enema.

As I mentioned elsewhere, my Mom is under hospice care. I've been going in to STL every other weekend to visit with her and to be with my Dad, brother and sister.

Last Thursday the hospice nurses told Dad, they think Mom has two to three weeks left so Mrs. Dar and the darlets went in with me to say our goodbyes, just in case.

Seeing your Mom shrivel up into a living mummy sucks - and it's just that much harder when you live five hours away.

Fuck cancer.

Geez, dar. I'm so sorry. :(

My good thoughts to you too.
The only benefit to what will always be a painful experience, is that you have a chance to say goodbye and I love you.

Sorry, dar. :(

Sorry dar. Yes, it's appalling and scary to see your mother change so fast. You think "How did that happen so quickly?".

ditto

Thanks everybody. Your kind thoughts are very much appreciated.

Add mine. I'm so sorry. I remember how much it sucked for me too, though it wasn't cancer. With my mom it was like this: she's gonna get better, wait, no she's probably not . . . well, she's doing OK, it'll just take a long time . . . no, she's dying . . . ugh. In the end I think the only recompense is being able to say goodbye. Take care of yourself.

It seems churlish to complain in the light of the above but ...
the better my mum gets, the more she rebels against where she is living. "It's my life and I don't want to live it like this".
She is (at the moment) much better than she was in hospital. But her mental and physical states are so variable (on an hourly basis) and her organisational/rational skills virtually non-existent - she needs 24-hour care but cannot see that.
I'm in for a bumpy ride - the more my mum, in the character that I know and love, comes back to me, the more we're going to argue.

Sorry to hear about it dar. I (we) have been through it a few times now. It never gets any easier. We have one parent left, my mom, in an assisted living home. Her days are numbered I am sure. Well, not really, we have a history of more than a few on both my mom and dads side living well into their 90's and my dad's aunt lived to113. I don't want that.

dar, hugs to you. I spent some of this last week wishing there had been some distance involved in my experience, but through you I hear the difficulty of that option as well.

Limey, my heart goes out to you, as I'd had that exact conversation several times in the last few years, and siswolf and I were dreading the possibility of having to put her into a care facility had momwolf lingered on.

Not at all, limey. I feel for you. You have a difficult road ahead.

Is there anyone whom your Mom trusts implicitly? Sibling, favorite son, favorite doctor? You might get some leverage that way.

Good luck. We're here to listen whenever you need it.

Yeah. I guess this time is going to suck no matter what.

Yep. My father did most of his dying 1,500 miles away from me. I was there for many parts of what turned out to be his final months, but the distance did suck in a big way. I feel for all of you who are going through this.

Are we experiencing a bumper crop of parental illnesses?

Like Dar said, sometimes all the options suck.

It seems like a bad year all around.

I'd have to agree with that remark, unfortunately.

Thank you, dar, and wolf. Your kind words given at such a difficult time for yourselves mean a lot to me.
That'd be me :neutral:. I have one surviving brother who is very supportive of what I do and always there for me on the phone.

I am thrilled today to have found a thing called an Analogue FCT device to which it seems, I can attach my mother's familiar Big Button phone so that she can make calls to me and her friends while she's still able to use familiar technology (an ordinary mobile is beyond her, and has been for years). I'm willing to take the risk that she'll ring far too often ... we'll simply be "out" :o ...
I have also found some online forums for people going through what I am and am taking comfort from reading their stories.
And tomorrow I have to pack up stuff from her house to do with her main interest (dog breeding) and send it to her doggie friends to assess where/whether it should be kept (i.e. breed club archives or bin). Not so thrilling.

I was thinking that. Bring back the summer of celebrity deaths and go easy on the dwellar rellies.

Thoughts always with you Limey. Mum's bro is in Australia and remembers Britain as he left it in 1979. "Stick him in a home!" he says - not entirely callously. Mum has to explain these days it's not so easy, so well funded, and he won't just be down the street in The Elms, all bills paid and happy as larry.

Sole responsibility is hard enough. Another sibling - with love and respect but not rolling their sleeves up is tough too. But love for a rapidly changing parent must be on a different level.

You know you can always call me now. I'll shut up and listen, I promise.

Thank you Sundae! Today has not been easy, but it's all gotta be done:
Made a start on compiling a "life story" book for my mum so that the care home staff can relate to her and her interests
Took a friend round to my mum's house to see if she could use anything there. It's good to know that things like wellie boots are going to good use with people I care about.
Started packing up the archive.
Got distracted by personal papers.
Went to see my mum - she says it is killing her to live in the home, but likes the garden, the minibus trips out, one of the lounges, the food ... begs me to let her come and stay for the weekend. All credit to Wolf, I just couldn't do it and said so. Mum doesn't want to see her dogs because "they represent everything that I have lost". She wants, we both want, the life we had planned for her, not this. Not this.

Ah chick.
The trade off between what speaking, thinking loved ones want, and what they can really cope with.
Damned hard.

When Mum retired they "put" Grandad in a home for two weeks while they went on holiday. Sounds awful, but it was sort of a trial run, with his full consent - they knew he was sinking and wanted to see if he would be happy. His health was good enough that his happiness was the main issue.

Mum wasn't trying to off-load him or anything awful like that, but she thought if he enjoyed it (as his sisters Emma and Anne do) he could have a better quality of life, especially if his health deteriorated.

He hated it. He said it was full of old people and he didn't want to be around them.

Now Mum had checked it - it was clean (NHS, not a given). There were activities. The schedule was what Grandad kept mostly. Similar food to wahst he eats just without him having to heat it or do the washing up. Company.

Nope. Hated it, hated it, hated it. Like a child gone to boarding school. Had it been Claridges I suspect he would have reacted the same.

She hasn't dared raise it since.

Old people hate change. Not being mean, but they have in every aspect I've met them in.
And they don't sometimes get what's good for them.
To balance this, neither do teenagers :)
You can only do what you think best. What you can sleep with at night. And if you do it with love then whatever happens, you should sleep peacefully.

Like Wolf, you're a great daughter doing a tough job.
Much love.

I fear in some senses that I am looking at the life I am in a sense fighting for! My heart is torn with realization of that which is coming all too soon.

She got her wish.
Shortly after Christmas my mum developed a chest infection which did not respond to antibiotics, so they tried different ones. On Tuesday the Nursing Home decided to send her to the local cottage hospital for intravenous antibiotics, as they thought she'd developed "a pneumonia". Within an hour of arriving at hospital she had slipped into unconsciousness. Apart from a period of agitation yesterday evening, that's how she stayed until she died at ten to midnight, Wednesday 6th January.

I'm so sorry limey.

Condolences my friend. It is a tough situation. My thoughts and prayers are with you and your family during this difficult time.

Just reading this thread and nothing much to add. You do the best you can and as much as you can. No guilt, no remorse. When my mother was in the final stages of dying, her breathing changed. Each breath that we take for granted became strained and hard for her to complete. There were moments where she stopped altogether and then took a deep breath and went on. In the end, the breathing got slower and more faint. Finally, like the last note of a symphony she let a breath out and did not inhale. We (the kids) were somewhat relieved, but our dad just sat there and cried, 62 years of marriage and companionship does not pass so easily.

I was glad I was there and would not have it any other way.

Limey, I'm so sorry, but it seems she was all done with her life and ready to release you back to yours. I bet it hurts like hell and then some, but she isn't hurting any more and she will always be there in your thoughts and memories and actions.