The Caregiver & Dysfunctional Families: How are you doing?

Hi Veronica,
Automatic = automagic...I was being funny, a smart aleck, :)
Have a peaceful day,
Christine

Should have written automatic not automagic although you might think so if you try it.

Hello,
Thanks Veronica, haha, I think i will do that. He is a spoiled brat. Charles thinks so too. :{ Puts the FUN in Dysfunction, too.

And hadn't heard of an automagic jam maker,...I will look for that! That would work too, they like bread things, and I could control the sugar a bit more there. In any case I haven't seem much of a behavior change in him with or without sugar...but I do feel like the vitamins might be helping. Cautiously optimistic. And Charles got another dr. appointment for him for Friday. Whew. I need someone to assess him from here, he has been going to the VA for care, but I am not sure it was the best choice. My opinion, of course. I want to make sure, for his sake.
And thanks, Austin, for your support too!
Hope all is well out there.
Christine

Veronica you are giving great insight to Camaryllis and her situation -she now has good take away information.

Still doing good Christine. Why not find out what Charles's son hates to eat the most then serve it next time he comes over.
I agree the sweets are a double edged sword. Can you bake with one of the substitutes like Teva? What they really need is lots of protein and plenty of fruit and veg. home made bread rolls will also go down well as a snack warm with butter and jam. preferably home made and low sugar. You can buy an automatic jam maker that does it all for you in about 20 minutes. The recipe calls for certo so you can go light on the sugar or again add some Teva. It only makes a couple of pounds at a time so you can just keep it in the fridge.

Thanks Glad. Yes, I am working on all this, getting him to walk more, although he seems to be weaker this week. His behavior has been a little better, not so angry, the past couple of days. I am sure it will not last. He has been recognizing his wife and son too. I think because Charles talked to his mother and told her that she needed to interact with him more. Me doing it wasn't enough, as he really doesn't know who I am. She was mad at FIL and not speaking to him for a week or so.
This is so difficult. But I feel like at least I am keeping afloat.
Thanks for listening,
Christine

Christine-
Good for you fattening them up! When I had step-dad in PT for a few months, they said the weight gain on him is wonderful, but a double edged sword. They also need to increase their strength because there is now more of him to get around.

And the thing with sugar for my mom, is she has an addiction. If she has a little bit, she becomes absolutely energized, then wants more and more and more. Just like a little kid on a sugar high. Then the sugar crash happens, she becomes agitated and angry. You might want to consider restricting the sweets for a couple of days to see if it makes a difference in FIL's behavior. There are many sugar-free candies available.

Good morning,
SLIGHT RANT AHEAD, SORRY
Well, another surprisingly peaceful weekend. FIL seems to have a clue at the moment. I have been giving him B vitamins for a couple of days, thinking that might help his confusion. Fingers crossed. Charles' son showed up yesterday, to insert his almighty opinions on what we needed to do. He has been estranged from his dad for a couple of years this last time. On and off since he was a teenager. He is a jerk. I had to grit my teeth and serve him supper. FIL did not recognize him. But it didn't upset him too much. Charles gave FIL a haircut last night. He looked like a wild man. Was supposed to go to the doctor this morning, but at the last minute Charles had to cancel. Argh. I try so hard but can't do anything about disorganization on other people's parts. I told Charles to make the new appointment himself. Maybe then he can remember and schedule it so he has no conflicts. Double Argh.
Took MIL out shopping on Saturday. She wanted to buy some clothes for FIL, who only had two shirts and some threadbare pajamas with him. They packed like madmen. I can't cope with disorganized people on top of everything else. Anyway, got some clothes for him and she decided she wanted another haircut. She has been complaining since she got it cut last weekend. Now it is really short, and she will be happy for a while, I hope. I took her for ice cream after our shopping, and that made her really happy.
Charles' son made sure to note that I had a lot of sweets for them. What they eat is their business, I wanted to slap him. They like cookies and brownies, and I bake for them every week. It makes them feel loved. And they both need to gain weight. I am not worried about their sugar intake. They eat really well every day so cookies are not going to kill them. Some people think you should limit sugar for elderly people, but I don't agree. At this point if I can fatten them up a little their health will be better. Neither one has high blood sugar anyway. I am still mad about that silly boy and his opinions. It is his wife, really, she read a book about social work and thinks she is an expert.

Sorry for the rant. The good news is that things were more peaceful. The bad news is that the son is sticking his nose in.
Thanks for listening,
Christine

Glad it was helpful, if there is anything else I can help please ask. Would it be a financial burden to take Dad out of the VA. if it is not a problem a decent hospital closer to home would be more convenient and at least you would be seeing the same Dr. keep us in the loop.

Veronica, I can't thank you enough for your input here. This info will help. Sounds like I have some options to consider. My dad isn't sexually active, and because of COPD he was given 5 years to live by a young doctor in March of this year - but I often reflect on that conversation and wonder if the doc wasn't trying to get through to my father to get him to quit smoking... dad will never quit smoking, btw, I already know that. So since he is going to continue to smoke, and he has COPD, I think its reasonable if unfortunate to expect that his quality of life and health will continue to decline - at unknown pace, of course. I could understand if he were a spry, active 76-yr-old that a permanent cath would seem extreme, but that is not who my father is. He is very sedentary. His mental capacities are such that he cannot live on his own without oversight. So... I have those considerations, too. Whatever makes it easiest for him to incur fewer UTIs, bladder infections, and whatever is less maintenance is the way to go.

I'm going to re-read your post a few times and start making some phone calls tomorrow. Maybe removing him from Urology at VA all together is right move. Maybe new primary doc can provide referrals, I just don't know yet.

Alison. It sounds as though you and Dad should put your foot down.
However many tests they do Dad's peeing ability is not going to improve.
They have done cytoscopies and should have taken all the biopsies they need.
If his PSA is not rising or already high he does not have prostate cancer. They can do a biopsy of his prostate for that anyway.
A Turp is not without nasty side effects as in heavy bleeding,incontinence (Depends or another cath) impotence (there is help for that if he's still active) continued pain on urination and retention if it originally had other causes than enlarged prostate. The prostate tissue may again strangle the urethra and back to square one. Add to that the risks of anesthesia and continued risk of UTI. the plus side if there is one is that he will have no external incisions as it is all done through the penis.
He may want to consider a prostatectomy. of course this is major surgery and has significant down sides but when it's done it's over with. There is now a proceedure called a de vinci proceedure which is done remotely with the surgeon basically sitting at a computer and manipulating tiny instruments remotely.
The patient is under general anesthetic and tipped head down so his abdominal contents are pushed up away from the pelvis to give more room to work. 4 -6 tiny incisions are made in the skin and the surgery is completed that way. Afterward he will have a couple of stitches in each and a catheter for 10 days while the urethra heals as they have to cut it to remove the prostate. there is usually minimal discomfort after the surgery and only one night in the hospital. he will be seen in the clinic in 10 days for removal of sutures and catheter. he may or may not be incontinent afterwards and choose to wear Depends or have a catheter. He will be given exercises to strengthen his pelvic muscles like the keegles women get and some men have complete control and others may be mostly dry but leak at times. impotense is a big problem for most men but there is a lot of help for that. It is major surgery which ever way you look at it but after the prostatectomy that should put an end to all these tests.
If they opt for a supra pubic catheter, he seems very young to be stuck with that for the rest of his life unless he has other life limiting diseases.
You can buy Depends now that look like regular underwear and just pull up or just wear a pad inside his usual underwaer depending on the amount of leakage. he may feel more independent once he gets this all taken care of and you will have a lot of hassles out of your life but you are going to have to be assertive with the VA.

Christine - glad you had a decent day, and Charles made up with his dad. Sounds like you accomplished a lot and had fun with mil.

book - still waiting to hear from PP resolution centre. and the company who supposedly sold me the item. Pretty scary for your sis - glad it got resolved.

cm - lol

veronica - I think I am going to close my PP once this is resolved. After this happened. I did some reading on the internet, and overall it was concluded that credit cards are safer. If you are talking about my basement stuff (the remainder of mother's stuff will go to auction once she is settled in her new place) I have to go through it, and toss what I don't need/want. Doubt there is anything there anyone would want.

Anything worth while in the house, that I want to get rid of, will be brought here to E'ton, and sold when we auction mother's things. I have a few over 100 yr old books, and some fine china from years ago, but never use,so it may as well go. There is no auction house where we are, and I need to downsize. We only have a single car garage and right now it is full of G's horse, carpentry, hobby and hunting stuff, so we need a shed anyway, as I need the use of the garage in the winters.

We finished up last night about 8:30 pm. I was glad to see the end of it, though had some sadness too. It rained while we were at the storage place, one box came apart, but over all it went smoothly. The 10 x10 storage unit is packed to the hilt. Mother had, for example, 6 chairs and a sofa in her living area, as well as a large solid cherry wood desk, and a heavy coffee table, and many large cushions. I have never known anyone who could pack as much furniture into a place and have it look good.

I am waiting for the honeymoon period on this floor of hospital to be over. How long it lasts depends to some extent on how much they are prepared to cater to mother, though it will end, eventually, where ever she is. So far, she has had one tantrum that I have heard of.

I slept in this morning after working about 6 hrs. yesterday. The infection is not gone, but I feel alright and no sweats, so it is improving. They say what doesn't kill you makes you stronger. After moving mother's stuff, G went off last night to work with the horses. I hope he got some decent sleep. Today, I will take it easy, and then home tomorrow on the bus. G's good qualities shine at times like this. He is such a good, hard worker, and so patient. He believes that at the end of her life mother should be able to have her familiar things around her, (I agree), so he is prepared to go to some trouble to assure that. And this despite some nasty words she has sent in his direction. He is a good man.

Better get up and have a meal, I guess. On the way to mother's yesterday, I picked up a lovely chartreuse summer blouse - on sale of course!! I will wear it today. Have a good day everyone and do something good for you!

I typed up this post about my dad's catheter situation yesterday, but was so tired and cranky, I had no idea if I was making any sense, and its quite long... so unless you are wanting to know more about the process older men can go through when first getting a catheter than is likely leading to perm catheter - feel free to pass on this post! :-)

Emjo, you had asked about situation with dad's catheter... he currently has "coude" catheter now for a year, with a leg bag that collects the urine, and this type of catheter requires changing every 4 weeks. (Used to be 6 weeks but since my father is particularly bad about looking after the catheter, keeping it clean, and has gotten a couple of infections, the VA said he should come in for cath change every 4 weeks.) There's been a lot of change with his catheter issues: his primary doctor put in an order for Home Nurse to come out to change the catheter, but somehow ball got dropped, dad can't have coude-type cath and get Home Nurse help, and so I still need to take him in for that every month - on top of additional medical appointments, of course, because the VA seems to act as dozens of entirely separate clinics insomuch that I take him one day and one location for blood pressure check, but Urology clinic is at the downtown facility that I'm never keen to keep having to trek up to over and over.

Yesterday was supposed to be the last appointment of doing bladder checks - this was the 3rd time (previous tests spaced out over past 6-9 months or so) that he was brought in in the morning, they remove the cath, they fill his bladder with liquids and see/test what he can release on his own. In the meantime for the past year, my father takes 2 prostate medications to shrink his prostate in hopes that if that is what is choking off the urine flow (and it commonly is), then some improvement in stream flow will be made. Previous 2 urology docs said my father can't physically empty his bladder without a cath after such tests were done and his abdomen/bladder gets ultrasound and they see most all liquid is still inside. And they inserted scope to see exactly what is going on in his passages, etc. And the consensus for some time now is that he needs permanent catheter, the kind that would be a tube inserted through abdomen wall directly into bladder. Right now, cath runs through his penis. Obviously an abdominal wall cath is something I'd be a lot more comfortable helping him keep clean and look after and this was supposed to be a Done Deal yesterday, that he would now be scheduled for outpatient operation to put the permanent cath tube in.

Instead, a new doctor (-I get the impression the VA has a regular revolving door of new interns/resident-type docs from local med schools, so that doesn't help keep things on the one track, for sure-) that I've never spoken with before backtracks on everything that has been discussed and agreed to for the past 9 months and now wants to do 4 additional appointments to do urine culture test, biopsy test, additional internal scan, and do a TURP (prostate enlargement procedure), even though she says she completely agrees with other doctor's conclusions that my father isn't a good candidate for this procedure, and will most likely be rendered incontinent after it is performed, because his main problem isn't his enlarged prostate but that his bladder is significantly scarred from years and years of having to force out his urine and not emptying bladder fully. Creating an opening may mean he has to wear Depends and/or still get permanent catheter? I'm confused and am going to do some research and make phone calls this coming week.

I'm going to stop there, its a really long post about my dad's catheter issues. :-) There has just been so much goofiness and miscommunication between the staff of Urology Dept, and Friday's appointment just emotionally leveled me all during the hectic Chicago rush hour traffic drive home because it was supposed to be a resolution of sorts, a turning point, an end in sight, and instead more steps were added, which means several more months of just Urology appts. :-( I was just very disheartened based on what had been discussed with doctor's already multiple times.

Hope everyone is well and having a great weekend. Be back soon with a more positive attitude!

Closed my PP a long time ago. i did not like the way they could block amounts in my account. You aften still have to pay through them on ebay but do it with a credit card. Don't know if it is safer or not.

Emjo can you get an auction house to add it to one of their household auctions. probably cheaper than putting up a shed

Nice little cartoon in this month's "The Oldie" magazine (brilliant read, highly recommended, and if there isn't already a US edition it's time someone got on to it):

Wife: Have you seen my duster?
Husband: Feather or knuckle?

Nice to see PayPal being human, Book. Be even nicer if it wasn't a surprise, of course, but there you go. Good for them.

A few years ago, someone hacked into my sister's PayPal. They tried to withdraw $10,000.00 from her checking account. Sis lives paycheck by paycheck. She doesn't have that $$ in her bank. She got a "bouncing" check withdrawal notice and fee. She contacted PayPal and they returned what little money she had in her checking account and the bank's bouncing fee (Insufficient Funds fee).

Hello all,
Well, another semi peaceful day today. Charles came unglued at his dad, but everyone had a time out and kissed and made up. Whew. I took MIL out clothes shopping and to Wal Mart. A big outing for her. And took her for ice cream on the way home. Haha. Sweets do wonders for this group.
She was outside after we got home and tripped on the steps and went down. Skinned knee. Just like a little kid, poor thing. Anyway I doctored her up and sent her on her way back out. Oddly enough FIL was there and ran to help her get up. So he has some energy when he wants or needs to. We had to get him some clothes, he only brought two shirts and since he keeps wetting his clothes I can only wash so often in a day. Anyway, that got accomplished. And, MIL wanted another haircut, so I took her to a walk in place, she got it cut really short, so she was happy, as she has been complaining about the haircut from last weekend ever since.
All in all, a win so far today...
Thanks for listening,
Christine

Oh and in the middle of all this someone hacked into my PayPal account. I have them looking into it. Thankfully it was only a little more than $40 and I caught it quickly and changed my pw. It was after the big eBay hack. I changed my eBay pw -should have thought to change my PP one. I think I will close it and get a 2nd credit card only for online purchases. It seems that ccs are safer than PP.

Have a good day everyone and do something good for you. I think a nice salad for lunch is in order.

Just totally lost a post - We will finish up today and be thankful this phase us over.

cm - thought about it but you cant have a sale from the ALF, so it had to be moved anyway. Like G Norton's quote, very true, then thought you were describing my G! Definitely impish charm, mischievous sense of humor, clever and kind. G is off already hauling horses, I slept in and feel quite decent. Yes, I get a lot of physical work and expense thrown at me. I tell myself that exercise is good for me, and I am thankful I can afford the expenses.

Austin - love soup - make all kinds of it. Glad to see you back posting.

Christine -I agree with veronica and cm, you are doing so well!!! So important to be able to disconnect for a while.

Working on compartmentalizing. It is something G does too well, and from which I would benefit. Tomorrow will be a ME day. The move should be over.

Monday I return and have to find somewhere to store basement stuff as the lads need their trailer back. We may need to rent storage up there or hurriedly put up a shed in the garden, the worst part of which would be getting a base prepared for putting it on. I have given it to G to think about. I know need to do some sorting before it goes anywhere. Don't want to store stuff I will only toss anyway.

Wow, Christine, that was a fun subject to have dropped on the dinner table. I wouldn't have thought he'd have been actually in Hiroshima itself, but I'm sure it would have made a very strong impression on him as part of his war experiences. Perhaps we forget, at this distance, what an apocalyptic event the deployment of nuclear weapons was. What was your FIL saying about it?

If this seems set to be a recurring theme and you want to brush up on it to get on his wavelength, The World At War documentary series (made in the 1970s, narrated by Laurence Olivier) gives a plain if harrowing account. Don't let him watch it with you, obviously! And I wouldn't recommend it if you're off to bed any time soon. I'm not disagreeing that distraction is the right strategy, not at all; but you might find it easier to catch his attention if you can meet him halfway.

And, of course, you may already know quite as much as you've ever wanted to know about Hiroshima, thank you very much! - it's just a suggestion.

You are doing fabulously well, all the right things. Well done to you.

Christine you are adapting so well and finding ways to cope. Some people never do it but you are way ahead of the curve.

Good morning,
Well, another surprisingly peaceful evening yesterday. Although at dinner FIL started talking about Hiroshima, guess he was there in the war, and started crying and kind of wailing. I didn't know what to do, my first thought is great, let's add PTSD to the insane cocktail of all this. I patted his hand and let him talk. Charles finally told him to stop talking about it though, he said it wasn't helping for his dad to ruminate about it. So FIL stopped talking. I took him outside and sat him on the side deck, and told him to look at the trees and think about peace. Then I made some strawberry shortcake, that helped too. He went to bed peacefully.

Last night I also went to my room and read for a while, and let Charles handle the old ones. I felt a little better after that. Even if Charles wasn't here, I think I could do that for a little while, anyway, and that would help me disconnect.
Have a peaceful day, all
Christine

Sandwtch thanks for the recipe always looking for meal plans-have some ground sausage in the freezer that I might use. I serve thick soup one night with texas toast and another night sandwiches -makes meal planning easier.

Emjo how about disposing of it - lock, stock and barrel, house clearance service, whatever - and getting new stuff for her new place? Which, by the way, you have delivered and do not heft around yourself. My goodness (grumble mutter rhubarb grump) you do get an awful lot of work, as in actual hard physical work, still handed to you. More delegation!

I thought everyone here would like this comment, and I mean to bear it constantly in mind: "People who make you miserable have just as big a hold on your heart as the ones who bring you joy."

If anyone's wondering, this comment was made by Graham Norton in his fortnightly column. Graham is a tv presenter, commentator and - not so many people know this - Agony Uncle for the Daily Telegraph, one of the UK's stuffier, respectable newspapers: if you like (very camp) impish charm and a mischievous sense of humour, look him up; but the main thing is that he is a clever man with the kindest heart imaginable.

((((((hugs))))) Alison - you did have a difficult day. Please rest and plan something nice for you. I am not clear - did they implant the catheter? What a long day, and exhausting! Big hugs to you for all you do for him

(((((bananas))))) - welcome. I like your name. You fit in here well. Sadly, many of us have the family to prove it. Whipping boys, scape goats, the Cinderella child, the golden child (not many of those around here), narcissism, personality disorders, paranoia, manipulation, FOG - (Fear, Guilt and Obligation) then add in dementias/alz. Not a pretty sight and tough to deal with. Number one - take care of you!

It has been an adventure this afternoon and evening. G came alone to tackle the moving, took a lot of smaller stuff to the storage unit and then went out and "found" someone to help with the bigger stuff. "Someone" smelled richly of booze, but he could walk straight and ended up being helpful. Most of it is in the storage unit. We have to pack up much of the kitchen still, but that is not a huge amount of work. I pooped out after several hours of packing and wrapping and my back is sore. The loading door was locked at one point. "No one told me it was being used" said the lady on duty. Then she didn't know how to unlock it. G in the meanwhile was not going to be stopped by a door, so he yanked and smacked things and eventually it opened.

Tonight I walked back to the hotel while G and "el vino" went off to unload the last of the big things. Too late for the hot tub, but maybe tomorrow morning to ease the aches. This is the third furniture move in 4 1/2 years. By the time we get her into her new facility it will be 4 times in 5 years. I don't want to do this again, but we will have to deal with it in 6 months or whenever they move her, and then deal with disposing of what won't fit into her new place. That should be it for a while.

Hmm this caught my eye.dysfunctional families.omg.
Its a scarey thing to be around
And i have the family to prove it.
I wished id stayed away like i was
Told.but no me i try to make peace
But peace doesnt come for you
It only comes for some bullies
and physical and mental abusers
In your life if they are still controling you like they did as children.i hate my family and fo good cause. You cant change situations if people think they are always right.and you are dirt..and as long as you are the whippin boy they are happy..by the way i read a post with that name that fits.. why do some families fight cause they were raised to. And as long as the link is there it will be til.death.

Been wanting to comment and share, but so busy and tired past two days! Today was all day at VA, starting at 8am and ending after 5. Then the hour drive home in Chicago rush hour traffic. I'm beat. And I'm not happy with the waffling VA docs who keep changing their direction on what dad's catheter prognosis is. More steps (read: several additional appointments) were added today instead of today's appt being a final test of bladder function (he's had several already, I agreed to do as many as possible, to give him every chance to be without catheter, even when dad and doc said go ahead and do permanent catheter through abdominal wall...) So... What just happened? Not cool! This is not what different doc said previously!!! I'm so tired I can't see straight. I'm angry, frustrated, tired and must rest before I murder someone... likely would be my father and its not even his fault - today. ;-) (((hugs))) and hugs to me, too, today, I need one. :-/

Christine, I forgot to thank you for your warning. I went and got a snack first. lol

Christine, Isn't it ironic how all the caregivers need to be told how to take care of the individual? No let me help. What can I do to help? Do you need anything? I can do...if you think it will help. NO,NO,NO Unless someone is paying me to 'take care' of my mother it is not their place to tell me how to take care of her. You (me) stubborn old german/ polish/ kraut/... and nobody is going to tell me what I should or should not be doing as a caregiver. I blocked some e-mail addresses and changed my phone number. There take that, solves that problem. It wasn't that simple but it felt good and less stress since there is less communication.

Cam, search sibling stories on AC and you will, again, realise that You Are Not Alone. Backseat caregivers aren't always siblings, of course, but the same thing applies. It's amazing how much 'wonderful' advice people have to offer when they haven't the first idea what they're talking about. When I figure out how to NOT want (there now, I've split an infinitive - that's what a wind-up this is) to punch my SIL in the face I shall be sure to pass it on.

Nuts to what grandson thinks grandma said he could have. She said, he said, la-di-da… Where's the signed affidavit? Get your ground rules set in stone now and there'll be less trouble down the line.

One tip that really does save trouble, and has become a bit of a hobby-horse with me, is: if Grandma has got nice things she'd like to bequeath in the fullness of time, do your best to persuade her it's better to present them to people now. That way she gets to choose who gets what, and they get to thank her in person. My aunt did this with her jewellery and I shall be forever grateful to her for the example. Of course if any items have significant monetary value she'll also need to keep records; and in a second people will come online and tell you to watch out for 'lookbacks.' But that's a whole 'nother story.