The Caregiver & Dysfunctional Families: How are you doing?

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

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.

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!

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.

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.

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

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

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.

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.

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"

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

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.

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.

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

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.

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.

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)))

I have observed over the last decade an increase in people having sensitivity issues due to the situations they are going through. So my questions...............

Are we expected to so completely informed on all that is going on in the society or world? I admit...there is so much going on in the world we live in, how can one possibly know all and be informed on all? Because one is not informed, does that give others the right to call one ignorant and ill informed?

Both my parents had Alz. My father passed in 2003, my mother is still progressing with this disease. Should I call out people who have no knowledge of Alz/dementia? Should I say something to them to make them feel they are ignorant or ill informed? Lets face it, we are tuned into what affects us personally. So why all the sensitivity when you ask a question about their condition?

Our 87 year old has oxygen now for her asthma, and it is not related to the UTI.

This time because of my foot surgery, I can not run to the hospital,
it is too soon to do traveling by bus although the ride is only a mile, I guess he worst thing for me is the helplessness over letting them (the hospital staff) take care of her, I do not know how much she is eating or if she is drinking the water or if they even care, they said her IV is on (it is only for the antibiotics, the solution was only administrated to get a urine sample for the UTI test) but it was discontinued before she went to her room, so when they say things, I am not sure how to take it/them.

One of the worst things, I feel that can be done/dementia Alz pts. in the hospital is putting them into a bed, 24/7, when they aren't bed-ridden, she doesn't have the ability to call the nurse so I am not sure, how she is getting to the washroom, or if they are just letting her go in the bed...they have her ankles wrapped for massage ... so even if she could, she can't, not even bedside...

Loo~You are getting much more involved now. It can be a struggle balancing it all especially from a distance.
Sandwich~The attendant giving you attitude was really out of place...not to demean her job, but this is part of her role as an attendant, caregiver. That is why your mom is there, to be care for. Even if your mom was wanting only you to do it for her....wondering if she just pulls this on you when you are there, but takes care of business on her own when you aren't there. Thanks for info on the book...I am interested and will look into ordering it myself. I always just assumed with my mom that her saying she did not say or do something was just part of her denial that she was not perfect.
Joan~Happy to hear you have figured out your symptoms and hoping you are getting better each day. How exciting to design your own rings!!! I hope when the big event happens, you post pics on f/b. I would love to see the pics of your happy day!!
Glad~This research into Alzheimer's is great. The earlier the diagnosis the better....if the person is accepting of it. Because of my family history with Alz, I would gladly have the test for early diagnosis so I can plan my future with my hubs.
Margeaux~How cute of your great nephew!!! Glad you had that conversation with your niece.

I am still decluttering, LOL!! Clothing that needs to be discarded, etc. Hubs is still driving the rental car, waiting for repairs on his truck and having the air bag reinstalled. Do not drive a vehicle after the air bag has been deployed....can mess up the steering on your vehicle. Fortunately this did not happen to my hubs, but he was told never drive with an air bag having been deployed.

My daughter's dr. appt today was good. She will be 31 weeks on Friday. 32 weeks is the first goal to get to...better yet is 35-36 weeks. Not working has really reduced the stress on her body.

Because of the new contract that was passed last autumn, I may have lost a week of vacation time.Instead of having 2 weeks this year, I may only have 1 week. Trying to figure out how I am going to work that out so I can go Idaho for 3 weeks. I am going to end this...I have been having problems posting since yesterday and losing my posts.

My two year old great nephew connected his mom (my niece) and me this morning.
He got a hold of her cell phone, and selected my number from the contact list.
We had a good laugh behind this, and we loved it, had a good conversation.
She's my controlling sister's eldest daughter, but is a very nice young woman, and very intelligent. It made my morning.

Much Love & Light! Margeaux

Another hot humid day with a slight chance of rain. We sew getting monsoonal drift over California from Arizona...very nasty.

Emjo, so glad you got your symptoms figured out, and that you're feeling better. And yay! About your matching rings!

Sandwich,

What an ordeal you had to endure with your mom's birthday!
That's rather strange, don't you think an attendant giving you attitude because you didn't want to go in to wipe your mom. After a day like that, I'd have a drink too.

Hugs,
Much Love & Light! Margeaux

Emjo,

It's really baffling.....the situation with your mom. On the one hand, if I'm understanding correctly, she can't stay where she is, then they won't medicate her. Does the fact that she be more manageable in terms of her temperament have to do with being placed on the list by the SW?

You have gone through a very challenging year taking care of your mom's concerns, and also dealing with your health challenges. I wish you a lot of strength taking the bus, Emjo.

I do have to remind myself about the boundaries with my sister.
I avoided being available to her for caregiving, for a couple months.
It is the constant details about dealing with her at times that is so much work, such as even seeing her name come up on my cell phone and I not wanting to answer it, because I already have to be with my defenses up.
This last weekend, she called me on Friday, and I found myself prepared w/an excuse in case she was going to ask me to caregive. Well she didn't do that, thank the cosmos! I'm also making a hard rule for myself......that there's to be no more last minute requests for CG'ing, either, as she'd did for 4th of July, on the 2nd. Besides, most of the caregiving hasn't been for a big emergency.....only to let her have time off, to go be w/the beau, or grandkids. It appears, that she manages to do this during her work week and weekends, hiring paid caregivers.

Have a safe bus ride,
I wish you strength,
Much Love & Light! Margeaux

SM, a very interesting thought, retina and sundowning. There is so much that we don't know! That is why they call it practicing medicine.

Doctors are also researching the sense of smell and what tests may be able to diagnose dementia.

Glad-I was on the news about the eye test...something wiith the retina.I wonder if the eye thing has anything to do with sundowning and light.

Alzheimer's new test for diagnosis years before onset. A smell test and eye test are being researched in Australia. Google it.

Sharyn - so glad your sis named her daughter DPOA. her daughter's position is good,

glad - the underreporting is interesting. The figures for Alz would be even higher than they are now and probably more alarming.

Christine - please don't apologise for venting - not whining - but necessary venting. Haven't you noticed that we all do? I share the sad and helpless. We can have such good intentions and ideas re our parents or in laws, but the diseases are greater than our abilities to see these plans through. Sometimes there just are not any good options and figuring out which is best or least bad is not necessarily easy. These diseases have a life of their own and they bring us into unknown territory. Doors close, paths are blocked by insurmountable obstacles, and we wander in the wilderness of this uncharted terrain looking for a familiar path. What worked before does not always work now. It is tough.

Alison - wondering about your dad's appointment. Hope you continue to feel better.

margeaux - a year ago - doesn't seem that long

veronica -I don't think so (re dementia) Good info about the TURP.

sandwich - looks like it went off pretty well. Life sucking- yes. Mother's 100th was an ordeal. She looked around for things to complain about afterward ad ended up burning her bridges with my cousin who did the toast -she told him off for not doing a good enough job. He hasn't visited her since. Enjoy your birthday and the massage and music fest. Way to go!!! I may buy that book. In mother's case, she did not go through anything traumatic, that I know about, but I do think her brain is wired differently and that it runs in her family. I think the genetic factor is the big one in her case.

lwent - hope you got some rest and your 87 yr old is mending

loo - a lot more involvement - I can identify. Take a vacation anyway and leave the concerns behind! Sounds like you are getting things sorted out.

G called thus evening to tell me that his mother is in hospital and they don't feel good about it. She had a reaction to a shot or something like that. He is seeing her tonight and will come with me to the meeting tomorrow, She is a somewhat frail 87 yr. old who has a number of health issues, so anything can happen, though my gut tells me this is not her time. And there is my mother, physically healthy as a horse, trying to harm herself. If G's mother goes first they expect that his dad will follow soon after. They have been married over 65 years.

Finally figured out my exhaustion - the thyroid and a flare up of the intestinal candida. Stress acts on both of them and low thyroid means lower immune function. My symptoms are less than they were (which is a good thing), so it fooled me. I started the meds and see improvement already though I was very quiet today. Good bus trip yesterday. I may use that line again. They are the "luxury" bus. For a small extra price you get more room, movies, free snacks and drinks.

G and I have decided on custom made rings. There is a good jeweler at home, so we are making progress - slowly!!!

Have a good night everyone.

Beer in a margarita is fantastic. Restaurants typically do a bottle of corona nose-down in a big frozen margarita. I like the Radlerita better because it's sweeter. :-D

Looloo & Lwen - Hoping for a chance for both of you to rest and recharge. There will never be a feeling of "all caught up" or "got it all together". Those are lies, d_mn lies.

I read an interesting tidbit in a book on the bus this morning. Understanding The Borderline Mother by Christine Ann Lawson. People who have been through something horrendously traumatic can have damage to their amygdala, the part of the brain responsible for connecting actions to consequences or cause to effect, and in memory. Borderlines frequently deny anything to do with past actions and say it never happened. Because their brain physically can't remember it. Even if it just happened. This is why they seem to never learn from mistakes and have poor judgement. I was reading the sample from Amazon, and went back to buy the whole book because I want to know more. This explains so much about my mom.