The Caregiver & Dysfunctional Families: How are you doing?

Hi all,

My father's prostate biopsy came back negative for cancer. BUT...

No TURP. All tests and scopes also indicated that his prostate is not the issue and the urinary tract passage through the prostate is open and not constricted. So, again, exactly what I had previously understood to be the case before a well meaning doctor decided to change directions... now we are back to previous direction... which is my father has a scarred bladder from years of misusing it, not emptying completely. How that would happen to someone, I don't have a clue. But by the time I got here in 2011, I did notice my father had frequent and urgent need to urinate. He could only get little bit of the "overflow" out at a time, I suppose, and was never fully emptying. Only answer is catheter for now. BUT...

VA sent him home yesterday without a cath tube in place. As of right now, my father is self cath-ing. I've tried to drill in his head how important it is that he do this and I wonder if its just a matter of time before we go back to ER like we did the last time that my father insisted he could self cath. That was last May. We're doing this dance again, and that's ok.

I didn't get much sleep at all last night, hearing my father get up a few times and go into bathroom, wondering when it was going to be that he realized he cannot do the self cath and he will finally get so full of urine, he will be in great pain. Only at that point will I be able to step in and get him to an ER for a catheter. Until then, its a waiting game.

So. Not thrilled with the many changes of direction VA has thrown out regarding my father's urology issues. Not thrilled that I'm not sleeping right now as I monitor my father and try to gauge how he is doing with self cath. It would be GREAT if he can do it. I'm rooting for him. It may mean that his bladder will have opportunity to recover and repair itself a bit, since as long as the bladder is being fully emptied, the previous irritation from constantly being full is gone.

I will come back when I can. I wanted to let you know what had happened. It was a long day at VA and a long night while I waited and wondered if there was a trip to ER coming. But, not yet. We shall see. Thanks everyone. (((Hugs)))

Alison would you be prepared to do the "self' cathing for him? not something most people want to volunteer for. Would he allow that? It's not difficult when you are instructed. you said they sent him home with a catheter. He should have a new sterile catheter for each time he needs to cath. it is very easy to get an infection if he reuses one catheter and just washes it. Medicare will supply catheters free so if the VA won't another Dr can do so. you have probably seen the adds on TV.

Sharynmarie,

I'm glad to hear that your daughter is moving along well with the babies.
I'd forgotten to tell you also, that I was happy to hear that your husband wasn't hurt in this fender bender. Sorry about the damage to the car. WOW! My car is old, and I'm not even sure it has these air bags.

As to you question, I don't think anyone is expected to know everything about what is going on in the world. Sure....some people seem very well informed, about current events, news. But then one gets into a conversation with them,
and often find that they have very little knowledge about history, facts or an understanding of subject matter. I went through this, just a week ago with a girl friend who was visiting. She and my husband started to talk about fracking. I don't know much about it, myself. But the conversation between the two of them went no where, because they really knew very little about the topic. I didn't say much since I really felt I couldn't add any substantial information to it. Just listened. But I don't think anyone should be called ignorant. Some people have a tendency just to want to do all the talking, even if they've nothing to say.

As to whether you should call someone out for not knowing about Dementia/ALZ,
I wouldn't do that. I'm learning more and more that the general population, unless they've a parent who has it, doesn't know/get informed about it.
I've written about how after a visit at mom's, and if I've noticed some changes in her behavior, sometimes I've tried sharing this w/my husband. He comes from a real "fix it," mentality, not an informed, nor supportive angle. The lack thereof,
has irritated me. Or, if I've had to hear him make comments such as, "Oh, that' would be easy for your mom to do." The reality is, there are many things mom can no longer do, and well she's got ALZ, and this is part of what happens to them. My gf, also at times will try to suggest for example given the control factors w/my sister, that why don't I just visit, and take mom somewhere. I had to explain to her very recently, that this is no longer an option for us, because mom's mobility is quite compromised these days. Just to get her going, dressed and out the door is a huge event. Besides, for me since my sister has so much outside help constantly coming and going in that household, I just don't have the time to keep up w/all of her schedules she already has in place. I just explained this very matter of factly to my friend, in a nice way, and she understood.

I'm not sure I'm understanding the part about when you say that people are sensitive. Are you saying that you have called them out for not knowing something, then they get sensitive?

Much Love & Light! Margeaux
So now I try to have an approach of there are people around us, friends, relatives who just don't know much about it. But I'm not going to get all in a fuss if they don't.

HAAH! O.K., I guess we're having trouble w/posts.
I'd written something earlier, and tried to edit this last paragraph after my closing.
Don't know what happened.

Margeaux

C*p - just lost a long post - here we go again

I am frustrated with the inefficiency and doublespeak. They say she is not competent to make her own medical decisions, so I have to, but they won't give her the drug shot without her permission, but they will conceal it in her juice. Figure that out.

She got bad enough on Sunday that they gave her a shot -with her permission though she did not know it was the antipsychotic. She is calmer now but still delusional and negative. She wanted to see me, so I spent a short hour after the meeting with her. She is quite depressed and sees no point in anything. We went through the accumulated personal mail and she read it but did not want to keep it and gave it back to me. I offered, on my next visit, to take her out to the mall for a meal and a little shopping for whatever she wanted. She said she wanted me to take her to BC for assisted suicide. I said the offer was only for the mall.

She did not recognise me at first, and when I told her who I was, she said they were poisoning her. Then she said they were blowing smoke through the vents into her room to make her demented as she was over 100. Sunday night she stayed up at the nurses station all night. She is demented but not stupid. She knows they won't blow smoke to make the nurses demented. Oh dear.

I asked if she would like to see her financial advisor and she came close to tears - he has been like a son to her. I will try to arrange a visit after she has had another shot. I also asked her if she would like to be in her own place with her things around her and she said yes, but she didn't think they were going to move her. I said I was working on it. We talked about her paintings and which ones she would like with her. Her parting comment was for me to make sure she went to a place where they wouldn't steal her paintings.

It was sad to see her. I would say the dementia is progressing Her eyes looked different. There is less of her there. She was wearing an outfit I had sent. The SW would like to see her in something more suitable for the summer, but mother has worn black with a little colour in a sweater a scarf or an over blouse for years. I wouldn't know what else to get her. She has a few light coloured things, but not many. She could use a few light weight nighties so I will ask my sister to send a couple. The SW did understand that she had clothes in storage and the hospital is temporary, and that I am reluctant to buy a lot of outfits just for the hospital. She needs a hairdo. Last summer she got a soft perm and it looked so cute. I will ask the SW about that and also ask about putting mother on an antidepressant. I will arrange to have an orchid plant sent to her. She likes them and they are easy care.

G was there and tried to make a few points, but most of it went over the head of the psychiatrist. However, it is good that he knows how they are. I appreciate his support. We came back to the hotel and had a meal and he has gone off again. His mum is a little better today. She has had CHF for some years from a clot that lodged in her heart and gets pneumonia easily and has it now. She was thinking she was on her way out. She had her pituitary removed some years ago and is on drugs which are hard on her stomach, so she is losing a lot of what she eats, but she comes from hardy stock. I am hopeful that she will recover.

I am wiped now and watching a mindless TCM Spanish Maine, swashbuckling, Maureen O'Hara movie.

Back home tomorrow on the 1:30 bus - not the luxury one so I will bring my own snacks. Looking forward to being home. Have a good night all.

Margeaux-what I mean is there seems to be a trend with people where if you ask something about their medical situation, and they feel it is common knowledge you should already know...they can get defensively because you didn't know.
I have also had customers become angry because their blood sugar dropped and they want something to eat quickly. Now I am understanding more about the sudden low blood sugar issue and no longer assuming they are not taking care of themselves.

If you have not experienced or have little knowledge about a condition, people should not get bent out of shape when you inquire about it. A lot of it seems to come from younger people.

I would not give sarcastic answers if someone asks me about Alz. Even though you see a lot of commercials on it, you are not going to pay attention because it doesn't affect you.

Sharynmarie,

I realize that you work in customer service, and this in and of itself can be challenging to begin with. Sometimes in these positions we have to find a way to be very neutral with people. I understand, that maybe you are trying to be more accomodatiing inquiring about their medical conditions, but don't you think this could fall in the category of too much info. about them? Yes, people can behave in very sarcastic ways, and I too find this a trend also, with people of all ages.
Everyone seems to be in a hurry, stressed and it plays out in their behaviors.

Hugs,
Much Love & Light! Margeaux

It is nice to be empathetic about peoples medical situations but no one can expect you to know the details. Drs who specialize in an area of medicine should be knowledgeable but even they have to go away and look something up or request advice from a colleague. I believe there is little knowledge or desire to learn about Altz both because it is a scarey subject and someone in an advanced stage is percieved as being mad or in the earlier stages old and senile. there is so much predudice still about mental illness the attitude is "Poor Mary Anne her mother is not all there these days plus she has to wear diapers. What a shame she used to belong to our group" they have absolutely no idea of the hell that poor Mary Anne goes through on a daily basis or the sleep she looses at night. they just remark that she is letting herself go and suddenly looks her age. She does not seem very friendly anymore so they conveniently forget to invite her to everything because they feel she makes the atmosphere depressing.
If someone brings up the subject of their medical condition and want to talk I think it is perfectly OK to ask them to explain more about their illness. Most people seem to like to bend your ear about their latest operations and the tests the drs want to run. Some one will always get offended over something that is just the way the human race operates, just as some people can't take a joke. Yesterday I gave my PT a copy of a CT scan and he said "Did they use a real cat" so I said " yes several they ran up and down my body"

Sharyn - if someone's blood sugar has dropped it affects their emotions and can make them more unreasonable. Seems you are encountering some unreasonable people - for whatever the cause.

Tired this morning but not exhausted which is an improvement.

Thanks for the feedback everyone!

Hubs truck was totalled out today urgh!! At least no injuries as he has had several accidents commuting with some back injuries. The insurance will issue him a check and time to look for a another vehicle.

I am exhausted tonight so off to get something to eat and then bed. Hope you are feeling better Joan.

Sharynmarie,

I read you post again. I was thinking......how nutty is that on the face of it that, a customer, and I'm just going on the impression I got from your post, would dump on you for low blood sugar. As far as I know, people who suffer from this, also are not on top of the hours they eat, so that they can circumvent this. Now if this is the case, I think they were just dumping on you. It's not your responsibility, the fact they've possibly gone over the time limit, and whamo their blood sugar is messed up.

Hugs,
Much Love & Light! Margeaux

Emjo,

I feel your frustration. This situation is for crazy making.
Was your mom saying these things about the smoke coming out of the vents after she'd had the anti-psychotic injection? In any case.....I do realize how difficult this is to witness her decline. I know what your mean too.....mom has these periods of the look in her eyes changing, which she had just over a week ago when I was there on the 4th of July. My sister had taken her off her ALZ meds because she was just sleeping. Now my sister decided to put her back on some of it, because she says lately mom has become somewhat restless. But I do know what you're talking about, to this end.

I'm sorry to hear about G's mother, and I hope she gets better.
How sweet of G to go with you to this meeting and have some input.
You have a great man!

I love watching anything mindless.

Hugs,
Much Love & Light! Margeaux

Margeaux-what I have learner with diabetes is that a person can be doing all right things with eating and taking their meds...but can still experience a sudden drp in blood sugar just from additional activity. Yes most will carry something with them to eat like a hard candy. A lot of things can affect the blood sugar like jeat, sytrss and activity not to mention if they are dealing with a common virus. The longer you have diabetes the harder it can get to keep it under control. I always thought as long as you are eating right and taking the meds ...then it should be easy....but not al

ways the case.activity pr exercise is a good way to help manage blood sugar..but take my sister who has low blood pressure which activity causes it to become lower..so if she includes additional activity...her blood sugar can drop suddenly with no warning.

yyes ultimately it is their responsibility to carry something with them for these drops..but again..somethings it is not enough to bring the blood sugar up quickly. It is a lot more complicated than I imagined so still learning.

Hello all-

Early yesterday morning my father woke me up and said the words I was expecting to hear, and yet was really hoping that I wouldn't - he said that he couldn't accomplish the self cath and now he was feeling pretty bad as his bladder was overfull and he couldn't empty. Based on my discussion with his doctors/nurses Monday, since it was daytime hours we packed in the truck and headed up into city to go to VA to have him treated. It was a long day at the VA, again, but my father was given a catheter tube through his penis that drains into a leg bag... your typical "foley" except for some reason my father's version is called a coude.

So. Its done. Unless I take him for a second opinion at different medical facility, my father will almost certainly have a catheter for the rest of his life. And based on the number of times they scoped, tested, etc., I don't see that they could've missed anything. Also, the diagnosis jives with what I saw in my father's urinary habits before his cancer surgery and the catheter was necessary. He had underlying chronic issues. Going forward there is supposed to be an order via VA doctor for a home health nurse to come out every 4-6 weeks and change the catheter. My fingers are crossed that this actually gets accomplished (since I was told this previously but it never happened).

Veronica, as much as I'd like to give my father every chance to be without the catheter, I'm not going to do his self cathing for him several times a day. That makes him even more dependent on me (besides other issues why I won't do it) instead of less. I am trying to get him to a place where he is able to function on his own with some general oversight. And not one doctor, nurse, or my dad ever suggested that maybe I could help him with it. I think everyone was on board with: either my father can accomplish for himself, or he can't. Medical staff and I agreed that a temporary home health nurse wouldn't even be suitable in this situation, to "teach" or help my father do self cath for awhile. Because if my father cannot do it, no one will be there 24 hours, 7 days a week, and its a life threatening situation. Hope this explains it ok. ;-)

Oh! This man from the dating site just sent me text to ask if I want to go to lunch! (I thought I was "done" with all that but along came Julian...) I might just do that and be back later. Much more I wanted to say, and talk about all of your situations as well, so I'll come back later on. (((hugs))) Have a great day!

Joan~It must be very hard for you seeing your mother like she is even though you are somewhat prepared for it. I am glad G is there to support you. I am sorry to hear about G's mother and hoping she is getting better.

It is very frustrating regarding the meds for your mother. Maybe they don't want to forcefully give her an injection just so they can try to have a level of trust with her.

Hang in there everyone and try to have a peaceful day.

Sharynmarie,

Definitely, if you were talking about a diabetic condition.....that's way more involved. Hard candy as a healthy snack? Aren't diabetics supposed to avoid the sugar?

Yes, there's a lot to understand about different health conditions.
I have to be on it for my husband's cholesterol.

Hugs,
Much Love & Light! Margeaux

Margeaux-a healthy diet includes some sugar. Carbs are the big problem for deibetics because the carbs take longer to process so the blood sugar can be elevated for a much longer time than with sugar. This why it is best to eat whole wheat breads or brown rice as it is released much slower into the body. White bread etc is more harmful for diabetics.

Sharyn - has your hub had more than one accident recently? Or was it someone else? You are right that many things can affect blood sugar. Complex carbs are best in general as the sugar is released more slowly and keeps bs more level, but when there is a bs drop, things like pop or candy are necessary to bring it back up again. Re the injections, I think they fear a confrontation every time she is injected and want to see if a "soft" approach will work. Despite the psych. saying a couple of visits ago that she did not want to conceal meds because of trust they did and started with a very low dose and it worked for a while, and then about a week ago, I gather, she stopped taking her juice. She must have recognised they were putting meds in it. Feeling better this morning, but grieving the changes I saw in my mother and what lies ahead. All things considered I should probably have stayed another day to rest up.

Margeaux - Sugary things are not for snacks for diabetics, but for emergencies. I think that protein combined with complex carbs are recommended for snacks. Protein helps to keep the blood sugar steady. I had a student with brittle (hard to regulate) type 1 diabetes and she was having trouble with her bs though she was consulting with a dietitian. From what I had read, I recommended to her that she have a protein snack at bedtime not complex carb, as protein is better at regulating bs. A few weeks later she was tested again and the dietitian was amazed at the results and told her to keep on doing what she was doing. Her bs (A1c) was much better.

Yes, they are crazy making. Mother was given a 3 day shot of antipsychotic on Sunday. I saw her Tuesday so I would think she was still under its effect to some extent. She still has delusions even when she is on the meds, but she does not obsess about them as much. You can distract her more easily. Before I go down again, I will be looking for ideas as to how to distract her - especially if I take her out and also to give some ideas to her financial advisor if he chooses to visit her.

G is a good man - too busy with too many things, but a good man and supportive. He understands mother pretty well. They are trying to find out why G's mum cannot keep food down. I hope they find some solutions.

Watching a Turner Classic Move right now. :)

Alison - looks like you have made progress in that what is needed is obvious now, I suppose you will have to keep on top of them re the HH nurse coming to change the catheter. Ooh , lunch with Julian. I like that name so am predisposed to like him already. Let us know how it went.

I have to remind myself that vascular dementia is a disease just as cancer is, it is not curable in mother's case, and not even easily treatable, especially when the patient will not comply. So I can expect her to decline. This is not just "old age", which does take its toll, but a disease which is progressing. The 12th anniversary of Gordie's death is approaching in a couple of weeks too, and I know that affects me.

On another note, last time I chatted with G's mum on the phone she wanted to talk about his ex and how hurt they both looked when they walked his daughter down the aisle at her wedding a year ago. Frankly, I think G was stressed, more than hurt, but in any case it was not a particularly comfortable topic for me. Earlier, he told me his ex did him a favour by divorcing him. He was being honorable and saying for the sake of the children, but the "marriage" had been over for years. I think, in retrospect, he realises that may not have been the best plan. In any case, I told his mum that we have our own lives and his ex does not play a big part for us. I talked to him a little about the conversation with his mum, and he really did not want to pursue it. Any ideas of how to answer his mum if she does this again? She tends to say "poor G", he has had so many hurts. Well, talk to me!!! So have I and I do not appreciate "poor" anything. I see G as a competent man who has managed his hurts pretty well. We all have hurts.

Have a good day everyone. Guess I better plan some supper for both of us - deli chicken probably as I don't feel up to cooking. I tried the new microwave way to cook corn - throw one ear in the mv for 4 minutes, husk and all, then cut the end off and pop out the cooked corn on the cob. Works like a charm. :-D

Emjo -- have they showed the Barbara Stanwyck movies yet? I saw something on my facebook about that this week, and meant to record some, but forgot! Waaaa :(

loo - when I was in E'ton I watched a couple of Barbara Stanwyck movies but-had to leave before the second one was over. It was a murder mystery "Witness to Murder" with George Sanders and I really wanted to see the end of it. I love the old movies. You can find the full movie on YouTube, as well as others. I plan on watching it this afternoon. :-D

"Poor G he's had so many hurts", Emjo? Is he doing a Joe DiMaggio reference his ex? I respect a man who doesn't kiss and tell, so to speak - perhaps he's operating an 'if you can't say anything nice don't say anything at all' policy on the past, do you think?

In which case it would be better if his mother didn't drop hints. That sort of thing makes me itch, frankly: either say what you mean or shut up. But that attitude may not make your future MIL your friend, of course! If you can think of kind words to that effect, though, either you'll learn something you didn't know (or her version of events, at least) or she won't do it again.

Desperate to get to bed but mother is watching "This Week" and I'm reluctant to stop her (which would require having a hissy fit and stamping my foot). Yaaaaawn. Long day - visits to hearing aid technician and cardiology. Happy to report that both appointments were almost a complete waste of time: no news good news. Then she sat out in the sun all the rest of the afternoon. Why isn't she as sleepy as I am?

My G is quite a lot better, seems to be managing his self-injection anticoagulants and his catheter bag pretty well. Even asked nicely if I could change his quilt for a lighter one - I'm happy too, but mainly I was just impressed that he's actually listened to instructions for a change and didn't try to do it himself. Hm. He didn't know where the lightweight quilt was, mind you… maybe it wasn't just compliance, then.

That's a clever method for sweetcorn, Emjo! - very popular round here, I'll give it a try.

"Feeling resentment towards family members. Any ideas to help with these feelings?" I see in the margin to our right. Yeah. F*ck 'em. That's my big idea for today. Sorry, folks, I just need to get to bed.

Emjo I think it is pretty tacky for your future MIL to be talking to you about G's ex. I would be very tempted to just cut her off if she started that. perhaps you won't actually want her as a friend.

CM I am glad your G is feeling better. He'd better be following instructions. I don't think remembering these things for him is in your present contract is it. He wrote it so he can stick to it unless there is some re-negotiation. resentment towards family members seems to go with the territory of being a caregiver. Write them each a letter telling them exactly what you think of them then burn it

Hi cm - G has told me enough about his ex and I have also seen, from his side, how she handles things. He has told me that I will never know it all and that is fine with me. From what I can see, she has a personality disorder - lots of anger and very controlling. I am uncomfortable with the "poor G" and with the references to his ex. from his mum. I don't think pity does anyone any good. "Poor G" made his choices too as we all do. You heal and grow when you take responsibility for your choices. Mil has shared stuff before, but this went further. I really don't need/want to know more, or to hear "poor G". There are two sides to everything. I have seen enough about G (who has many good qualities but a few bad ones) to know that and also about the ex. I think I will try to cut mil off at the pass - nicely. Just have to think of how to do that. His ex really does not factor in our lives very much and less and less as the kids develop their own lives. If (when) his son with the head injury gets ill again, there will be contact, but other than that and maybe baby christenings there is none.

Great that your G is doing so well. I have been wondering.

Let me know how the corn cooking method works for you.

You sound tired, cm. No wonder with appointments today. Hope you feel better after a night's sleep. Resentment? For me, accepting that that is how they are helps. Not that I don't have my moments of anger, but I try to deal with that and not let it turn into resentment. Other ways - getting the anger out by writing out your feelings, but not sending it, counseling, having a break that you know they will be jealous of, lol. You do need adequate breaks and maybe it is time to arrange for more. Is it possible?

Hugs to you. Hope you have a good night's sleep.

Hi veronica - we cross posted. Frankly I think it is pretty tacky too, and my thoughts about her as a friend have been along the same line as yours. G has pretty much kept me from his family, though they know about me, and I have questioned that, but maybe he has good reason. He comes from a small town and everyone knows everyone else's business and he hates that. I am not too keen on it either. Thanks

Joan~Your post about G's mother reminded me of my mil. While we were dating, she invited me over to her house for dinner with my now hubs. She made home made chicken and noodles, my hubs favorite. This was a test....1) if I like the chicken and noodles then I would learn to cook it for hubs because he should have what he likes. 2) she talked about his ex girl friend that he got engaged to. She was a picky eater...and blah, blah, blah...she went on about her and how she did not approve of her. Well I was flattered being only 18 years old that she approved of me because I was a hearty eater and loved the chicken and noodles, LOL!!!

I honestly don't know if I have posted about other accidents my husbands has been in...he has been in several since commuting over that last 25 years. 3 resulted in our vehicle being totaled by the insurance company and those 3 were not his fault. This one was his fault not that is matters, really!! Another vehicle was totaled out parked in front of our house as a neighbor around the corner (who had just bought a new chevy 4 door pick up) came around the corner too fast and plowed into the back of hubs truck, LOL!!! It bent the frame of the truck not to mention destroying the bed of the pick up. I keep telling him he needs to buy an armored tank to commute to work!!

My in laws never gave me any instructions about hubby's favorites. When we announced that we were getting married FIL just said "I don't think you two are in any position to get married" Oh well keep on 'sinning"

There is someone else recently in an accident. Maybe Margeaux?

Maybe you ladies read about an accident on another thread.

Glad,

What's this about me being in an accident? May this not visit my door, thank you.
Must be someone else.

Much Love & Light! Margeaux