The Caregiver & Dysfunctional Families: How are you doing?

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

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).

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.

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

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!

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!

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.

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.

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.

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

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.

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

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.

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

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

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

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

Ah, you witty, clever, sweet-hearted bunch of saints... :-)

Thanks for the giggle reading last few posts. And I'm always stocking away little tips in back of my brain. Jam maker? That's pretty neat.

My grandmother ate whatever she wanted, all the medical people concurred if she wanted ice cream all day, every day, then that was fine. I think that had to do with her being so elderly no one expected she would live too much longer and so nutrition just didn't matter anymore, but getting enough calories in her did. I don't know at what point that type of "switch over" is made... from being concerned with proper nutrition to just intaking calories. I used to give my grandmother calcium chews that were like little fudge chocolates and caramels, plus lots of vitamin C drops, herbal candy, sugar free candy. There is a line of Gerber toddler finger foods that are fortified with vitamins that I used to stock up on and just give them to her all day. Its stuff like cheese puffs and apple puffs... I forget what else, but there's quite a variety.

I'm going to compose a letter to Urology docs at VA about me and dad's experiences so far - emphasizing the differing plans of action and some of the points Veronica made in her post - and see what kind of feedback I get? Right now there is an appointment for Urology mid June... I think I'm going to cancel it and just wait until I'm sure of what direction to go in.

Hope everyone is having good start to the week! I appreciate all of you wonderful individuals so much.

B12 deficiency is a reversible cause of dementia, Christine. And if FIL and MIL have been a bit undernourished… well, who knows. No miracles on offer, of course, but it might be worth getting their bloods checked out.

I expect Boy and Wife think they're - groan - "only trying to help." Famous last words, those are - most often heard immediately before guilty party gets his head bashed in with a china chamberpot.

Hi Countrymouse,
I didn't know that about B12, but that is good info. I am hopeful that at least things will level out at some point. FIL's behavior has been better the last couple of days. Not holding my breath, but it makes me think that maybe I can do this. :-}

I am sure boy and wife think they are helping. Insufferable know it alls. There is a phrase here in the south, "Help ain't help if it ain't asked for..." Which applies here. The china chamberpot is a good idea too. :)
Have a peaceful day
Christine

Alison - great information from veronica. I sympathise with the different stories from different drs. Having the same here with mother's psychiatrists. Would be nice if they got the story straight. - or coordinated anyway. Sounds like you have a plan.

Chris you survived the meddling step son very well. Hope B12 continues to boost fil.

The sugar debate is a big one - and the balance between enough calories vs quality of calories has to be case by case and even time by time with any individual, I think. I suppose it depends on, at least, length of life left, though we don't always know that.

veronica -your expertise is great -also mention of an automatic jam maker - hmmmm

cm - great info about B12 too. How is the party planning going?

Sharyn - haven't heard much from you recently -hope all is as well as can be with everything going on in your family

On the bus on the way home. Survived the moving reasonably well. Thinking if I can go through my stuff pretending that it is some one else's, I might be able to do a good job. I didn't get to the hot tub. There was a weird guy in the restaurant who got entirely too friendly/invasive and I didn't want to run into him in the pool area without my "body guard".

Hi to everyone else - have a good day!

I met them when I was 13 years old, I am 47 now. Dang the stories I could tell, He was my dad's coworker at the nuclear power plant, and she well she was just her being her. Stuck up rude and rich. Our family was tied together, as time went by I gave birth to 2 children which they've always been there for.I was very close to him and loved him like a dad but never got close to her I always looked at her as just a mean woman. Time went by I had another child. My momma had long since passed. My dad remarried and then he passed away . After divorces and marriages I always held on to that little bit of family that's been there for most of my life. Yes I'm getting to the point, they started failing in their health about 6 years ago. Him with cancer ,depression, hip replacement, knee replacement and her with anxiety, depression, dementia and early alzheimers remember that she wasn't very nice to begin with. One day she called me and said Jamie we can't do it anymore. Would you please help us. So I did , I moved in and starting cleaning cooking and making sure they took their medications and went to appointments. I got a job here so I can still pay my bills for my husband and I .he is disabled now. It's been a rough road on all of us involved but the thing is if you don't give up on ppl they won't give up on you. Signed:
The ex daughter in law ( me )

The main thing I learned today from my therapy session was that the fact is: that my mother with her enormous estate has handed complete control of it to my brother who has been unemployed for years, is bi-polar and has a history of financial irresponsibility, mother's money is his "bread and butter" he says.

All the rest of my thoughts: "You're doing what?!!!! Do you realize mother he can pick up the phone as POA and liquidate all your investments. Do you realize mother that he can take years as executor to settle your estate and has no accountability unless I take him to court etc etc...." These thoughts are all fiction. They may or may not happen. Mother could decide to change her will again. My brother could become ill. Lots of things can happen in the future.

The fact is clean distress, the thoughts based on fiction and projections of what may or may not happen is dirty distress where most of my suffering lies for sure.
So much to learn from all the distress.

Things will change and get better for you I hope you find peace and strength bunnyrabbit. Try calling her momma instead of mother it may touch something that was forgotten. Idk best of luck

Welcome Jamie - looks like you have found something that works. Great and very good for you for taking care of them. Do I gather correctly from what you signed that they are your ex in laws? Some of us here have a parent who is mentally ill, and that is another ball game. I have a lovely ex-mil. We are friends and I treasure her.

bunny - there is the reality and there are the fears. As you do not have POA, there is not much you can do, unless bro starts doing the kinds of things that you fear. If I were in your position, I would find out what recourse a family member has if the sib who is POA is abusing their position. I tend to look at what is the worst that can happen and figure out how to deal with it. Then you have done what you can for now and let it rest. Is it comfortable? No, obviously not, but the more you can detach, the better off you will be. I am in the position where I have POA and my sis has accused me having a vested interest in my mother's demise. I suppose she thinks for the inheritance. I suspect she has looked at ways she can get at me. I have to largely let go and let God as I cannot control her - just me. I and others know that her accusation is ridiculous, not that that would necessarily stop her from trying to cause me problems.

***sigh*** I knew the quietness could not last. Got back home to voice mail from the social worker and a call from a "friend" of mother's. The "friend" (frankly I think they use one another - long story) says mother wants to know if she is still paying for her apartment, as she thinks she should not be. As POA, I cannot discuss mother's business with anyone, other than the professionals looking after her, even if mother requests the info through people. Frankly, I wonder why mother did not ask the SW to get that info from me. Maybe she did. I will talk with the SW on Wednesday and the "friend" after that. I got an email from the SW with a scanned paper with mother's last wishes written on it. She wants no funeral in the Cathedral in E'ton, as the bishop has not been good for her. Just a funeral in our old home town and burial of the ashes with my father. What a relief!!! I was rather dreading a funeral in the Cathedral, as mother always wants pomp and circumstance. Our old hometown church is small and it will be a easier event and likely very few people there. All the locals who knew her are probably dead.

Oh well, mother has been fairly quiet since February. I must be thankful for small mercies. I suspect the action will heat up now and I will get more practice in detaching. I have to get her taxes done and then we are clear till the next move, other than whatever mischief mother can think up. If she is unhappy about us keeping the apartment for three months, she can take it up with the psychiatrist - it was his recommendation.

Good to be home again, even with the mess. Have a good night all.

Before I left, I picked up 5 hanging baskets of pink petunias at a bargain price. I thought they would be dead, but it rained here and I got one of the lads to water the ones under the over hang, and they are fine. The house looks like a hurricane hit it - piles of stuff from the basement needing to be sorted and stored. Hopefully I will be ruthless in doing this. I need to get the clutter reduced drastically.

OMG this thing has exploded all because sibs were concerned about inheritance! Now guardian and conservator both have retained attorneys! So, four attorneys working on this crap! Just cannot believe it!

gladimhere - UNbelievable - at least it should be, but unfortunately personality disorders and money are an explosive mix. I was just thinking that we had not heard much from you, so things must have quietened down. Guess I was wrong. Is your mum's money paying for the attorneys? I didn't remember that your mum had both a guardian and a conservator. I thought they were the same thing. Must be spring and the weirdos are coming out or somethingl

Yes, mom will be paying all these attorneys. Sisters have been spending moms money for theirs, I have been paying for mine. Had to ask for a loan from a friend to keep my attorney working when conservator said she would pay mine. Greedy, selfish, entitled sibs!

glad ((((((hugs)))) that is so crazy - they are spending their own inheritance on lawyers fighting about it - and also, let us not forget, the money intended to look after your mum. I hope it does not drain her resources too much. Yes, greedy, selfish, entitled describes them. Wonder if they would fight so much in court of they had to use their own money. Doubt it.

They would not spend their money, I know! Yet Sib is granted right to retain attorney as trustee if in mom's interest. And the big question is how trustee transferred, we all know how this transpired and it was not in compliance with the trust. That is grounds to expel her from the trust.