Caregiver Issues

[gbmifan]

WANDACLEO - I am so sorry. It sounds as if you did your best to insure your MoM was well taken care of. As our parents age we all know this is coming, but that does not make it any easier. Take care of yourself.

[merrieeee]

{{{{wandacleo}}}}I am so sorry for your loss. I understand what you must be feeling now because I lost my Mum 18 months ago. It is so very hard for you but right for her. She is at peace.

[ausdon]

{{{{Wandacleo}}}}

[kilo]

{{{{wandacleo}}}} I'm so sorry for your loss.

[jazzgirl]

Wandacleo, I was reading through what you wrote earlier just prior to your mother's passing (some of which I quoted below), and now that she has gone on, I think you should congratulate yourself for a job well done! It seemed to me that you did everything you could to make your mother's life better and you went above and beyond the call of duty for a daughter. Even in your mourning, you should be very proud of yourself! You may not think that now, but in the coming months or years, it should give you a very warm feeling that you did your best! :F_05BL17blowkiss:

I tried to organize, prepare, and take care of things--made sure I had power of attorney and paid the bills, knew where everything was, but the reality of taking care of someone with Alzheimer's (or any debilitating disease) is that it's just flatout exhausting and never-ending. I've been taking care of Mom for 17 years--and half of those were with her having dementia. <snip> If she goes to a facility, then it will have to be under Medicaid because I can't afford $7000 a month!! That's far from ideal. Plus, I know they will just drug Mom into oblivion because there's just no way they're going to put up with her fighting them.

<snip> My sisters were great about helping when all they had to do was "babysit," but they won't help now that it's difficult: "Too hard."Thank God for Clay and Las Vegas!!!

[Couch Tomato]

well there was the wonderful Desert Springs hostpial in Vegas but hadn't seen the inside of Kaiser emergency room since 2006. Can't say its changed at all or that I missed it. Took my mom to the ER today but thankfully they released her in a few hours after giving her an infusion of fluids. She was dehydrated. They gave her something for the nausea. Hopefully this is the end of something and not the start of another round.

[Guest Toots]

well there was the wonderful Desert Springs hostpial in Vegas but hadn't seen the inside of Kaiser emergency room since 2006. Can't say its changed at all or that I missed it. Took my mom to the ER today but thankfully they released her in a few hours after giving her an infusion of fluids. She was dehydrated. They gave her something for the nausea. Hopefully this is the end of something and not the start of another round.

Awww sorry couchie! I know your mom has diabetes but is that what causes her to be hospitalized? Taking care of an ill person is stressful, always waiting for the other shoe to drop. Hope you get to your concerts without worrying too much. :F_05BL17blowkiss:

[jazzgirl]

Took my mom to the ER today but thankfully they released her in a few hours after giving her an infusion of fluids. She was dehydrated. They gave her something for the nausea. Hopefully this is the end of something and not the start of another round.

Glad you got your mom to the ER, couchie. It is always best to err on the side of caution and get someone there to be evaluated. :F_05BL17blowkiss:

[jazzgirl]

Took my mom to the ER today but thankfully they released her in a few hours after giving her an infusion of fluids. She was dehydrated. They gave her something for the nausea. Hopefully this is the end of something and not the start of another round.

Glad you got your mom to the ER, couchie. It is always best to err on the side of caution and get someone there to be evaluated. :F_05BL17blowkiss:

Wow. I clicked here to see if anything was new and find that my last post here was strangely prophetic. Exactly one week after writing the above I erred on the side of caution and took my mom to the ER on the slightest of suspicions that she may have had pneumonia. I was on guard as I had witnessed what I thought could be an aspiration incident 48 hours earlier. Mom did not have any of the traditional symptoms: no major coughing and no fever (just slightly noticeable shortness of breath). Some type of intuition told me to google "pneumonia symptoms in the elderly" and I found out that there may be none and after some vacillating decided that I needed to put my mind at rest and get her in for an evaluation. It was good I did; her oxygen level was 88 at the triage desk.

It has been over a month. The elderly are at high risk to not survive pneumonia. I was extremely fortunate to get mom to the hospital when I did as the pulmonologist said she had a horrible case of pneumonia. This time both mom and I were lucky. Lucky to survive the pneumonia and lucky to survive the hospital. One morning when I visited her, I found the oxygen cannula in mom's nose, but not connected to any source! I also later found it connected but not turned on, or turned on at the wrong level. If anyone goes to a hospital or has a relative there, be observant!

[Couch Tomato]

Im really at my wits end. My mom seems to have gotten old over night. What the hell. I most worried about the fact that she's having touble walking and balancing herself. She told me she fell. And I see her just holding on to things to get to another room in the house. I've just scheduled her an appointment with her doctor and I'm going with her. She's also supposed to be going to physical therapy..because of her unsteady gait. Anyway... I've finally called my siblings so we can come up with a plan for her. I need to make sure her doctor knows all of her concerns. I also think she's depressed. Don't know what to do about that just yet. But I think she's breaking down physically but also emotionally and mentally. I do think part of the depression is because of her health issues. But I also think it may be other things that she won't discuss with me. So I'm hoping maybe some counseling would help but that's a touchy touchy subject. Sigh.

I'm going to demand some answers if they have to send her to every department in that damn hospital. I checked out her medical plan and every damn thing is free unless she wants to get a sex change operation. That's not covered. I told her that and I least I got a laugh out of her on that one.

[jmh123]

{{{Couchie and mom}}} You are right to do something about this quickly. She may also have neurological issues, given the balance problems, and that should be looked into right away. My mom started using a cane just to steady herself some years ago and it gave her a lot more confidence. Her balance comes and goes, as does her mind. I hear you on the counseling being touchy. I've heard about a lot of things, physical and psychological, that could have been done for my mother that it's too late to do now. So help her get some help, for your sake and hers.

[Couch Tomato]

OK I accompanied my mom to her doctor's appt today. The appt was at 1:45. It's 10:30 and I've been home for 30 minutes. Le sigh. Even the nurse at her doctor's office took one look at her at knew something wasn't right. We spelled everything out to her doctor...and well she sent us to ER for a CT scan because a regular appt would take two weeks. Looks like they did a complete workup though. The CT scan came back normal but the doctor set her up with a neurologist and ordered her a walker because the cane just is not working. She also will be going to physical therapy.

I'm really worried about that because she told me she fell and just seeing her holding on to stuff to maintain her balance is not good. Anyway, I'm a little scared because the ER doc said the word Parkinsons. Now he wasn't diagnosing her, just saying neurology wasn't his area of expertise but just hearing that word ...well there was an instant dread because some of the things I noticed in her for the past two weeks are things I do associate with that disease. Does anyone know anything about it or can you recommend a website. I don't want to work myself up over what may be nothing but I know my mom and something is just not right.

Now let me do my normal bitching about emergency rooms. Maybe there's a good reason but why do they always want you to tell them every drug you're taking yet you lay there for hours and they don't give you a one of them. Finally I had to tell them look, either give her something for nausea or let us go home ..and then I had to do the same for her neurotin which she's been taken for the after effects of shingles. Most people that have shingles..well when it's over it's over. But for some they have symptoms and nerve problems forever...and she's one of the lucky ones unfortunately.

The other thing that is bothering the heck out of me and I will be emailing her doctor tonight... The medicine that works best for her nausea is called Anzemet. But they took it off her and have tried two others drugs and they work somewhat but nowhere near as good as the Anzemet. Now, I'm trying to figure out why they took her off of it if it works the best for her. Are there medical reasons? Are their side effects we don't know about. Does it interact badly with her other medications..and she's on a boatload. Or is it the fact that 30 pills cost $2000. Now I don't give a darn how much the pills cost because she doesn't have to pay a dime for them but obviously somebody cares. It took 5 trips to the emergency room in 2006 before one of the ER docs even gave her this medication. So what's goin on here. Is it the insurance plan that doesn't want to eat 24K a year? And actually with this drug she would only need to take it when she felt the nausea coming on. So it wouldn't be that much. When I look up my mom's medical plan online it's called the classic plan. I just bet it is and I bet nobody else has that kind of plan because even her friends that are retiring now have to pay for medical insurance ..and quite a bit at that.

Anyway, enough ranting. Keep your fingers crossed for me.

[playbiller]

My father had Parkinsons for over 40years. he was lucky, it was slow in progressing and he did not hit paralysis until he was in his 80s. He died before the paralysis was complete, he had just got a wheel chair that year.

He died over 15 years ago, so web sites were not available. I do know that there are hosptials that have specialty departments for Parkinsons and that is where you want to go, other doctors mis diagnose, or dive the wrong dosages, there is a possible cure or slow down, but I don't know if it is available in teh US yet, or if it is approved for insurance. Michael J fox hasa research charity on it and he had the surgery, although it did not help him. It can move fast or slowly. Check around, there should be some information on the internet.

I am sure the doctors can tell, but the symptoms you are talking about are somewhat similar to MS, which my Aunt got in her 60s.

[KAndre]

{{{{couchie and mom}}}}

Couchie, have you thought about getting a patient advocate for your mother? I think California has a Office for Patient Advocacy who either might be able to help or recommend someone....

I dunno, has access to health care in California gotten that bad that someone with what sounds like GREAT coverage has to go to the emergency room for basic diagnostic treatment? That is so wrong on so many levels -

[Cotton]

Couchie, I'm so sorry your Mom is having such a hard time. It's so hurtful and frustrating to watch our parents decline and have difficulty with simple everyday things, let alone pain and any kind of discomfort.

I hope you can get some helpful answers for you and your Mom.

Don't get me started on California "health" system. My niece was there when her shunt malfunctioned and they had her on biofeedback and lordknowswhat to avoid doing the surgery she needed.

I'm glad your Mom has you, but I know it's exhausting.

:thbighug-1:

[atinal]

{{{Couchie}}}

I don't know about your mom's case regarding the prescription, but I can relate a situation my sister and her husband are going through right now. They both are diabetic and go to a specialist in that field. This past November when they were making their decisions for a supplemental health care plan they decided to go with one that offered special coverage for people with diabetes. Their doctor put them on the drug Byetta. My sister had tried it twice before and had trouble with it, but the doctor wanted her to try it again. Anyway this special insurance didn't want to cover it for either of them, they had to jump through hoops and the company finally agreed that they would cover it, then after agreeing to pay for it, now they have decided again not to cover it. So, insurance companies sometimes do just decide that they won't cover certain medications, however, I'd think they would have to notifiy you of that.

I think too, sometimes if their is another drug or combination that is cheaper they (insurance companies) may ask the doctors to substitute that, but sometimes if the doctor knows that the substitution doesn't work as well for the patient they will write the prescription for the one that works best.

I'll keep you and your mom in my thoughts.

[muskifest]

Couchie....I'm with KAndre---get a patient advocate! I don't know where you get one, but sounds like you need it.

Consider yourself lucky at least in the $$$ dept. and in the fact that you have siblings with whom to share the responsibility. But all the rest is universal angst and confusion and despair re: facing the fact of a parent growing old and feeling overwhelmed by all the things you must/should/don't know how to do about it.

What does your mom say about it all? Does she have a preference or has she thought about how she wants things to happen? Have you guys talked about a plan for her? That's so hard. (I speak, as you know, from my own 'reality show' of this issue.)...but I'd just say that when you talk with your siblings and come to some ideas about what's next, that you really plan how to include your mom in the steps---if she's able to participate in them.

I did with my mom getting her to the assisted living place, but I doubt I'll be able to do that the next time I need to move her because that will mean that her Alzheimer's has progressed to the point that she needs more attention than the current place is designed or is willing to offer.

I'm sorry you have to deal with this, babe. Call me anytime. :F_05BL17blowkiss:

[Couch Tomato]

thank you guys for all the well wishes..guess who was skipping through the house like NORMAL when I got home today. I'm SOOOO confused. Happy about this development but damn confused. Yesterday she couldn't walk without holding on to me.... the body is certainly still a mystery. I hope the neurologist can give us some answers. I just don't like not knowing.

[jazzgirl]

But all the rest is universal angst and confusion and despair re: facing the fact of a parent growing old and feeling overwhelmed by all the things you must/should/don't know how to do about it.

I could not have said that better! to Couchie. Please keep us posted. Depending on the diagnosis, many of us may have dealt with similar situations and can provide ideas. For instance, grab bars have been a big assistance for us (about a dozen are installed in the house).

[annabear]

Aww, Couchie :big hug: to you & your mom.

[Couch Tomato]

Well I'm home from work; got here around 3:30. Not because I'm sick but because my mom was having a full blown anxiety attack. I just knew if I didn't get home I'd be sitting in ER half the night. Got home, calmed her down, gave her the anxiety medicine, which I told her to take 3 times over the phone but she hadn't doen yet, nor had she taken her tylenol for the flu. Sigh. My mom is a registered nurse and I kept taking for granted that she would take care of her self as she knows what to do..but apparantly that's not the case. So now I'm going to email the doctor again about some home health care. I think unless I get it she'll be living in the emergency room. I don't know if her plan will cover it...if not looks like the fam will have to dig into the pockets to get someone here a few days a week for a few hours a day. Well at least I can ask. It worked with the medicine... I emailed her doctor about that expensive medicine that actually works and she prescribed it and she has 2 refills...so 90 pills which she doesn't have to take every day..just when she feels the nausea coming on. This is a lot better than the 10 at a time they were giving us before. I guess the squeaky wheel yada yada yada...

[playbiller]

Couchie, good luck. Do you know why your Mom does not take the pilsl right away? - forget, lowest priority, doesn't want to ?

[jazzgirl]

Play asked a good question, especially with your mother's occupational background.

Couchie, is it possible to "hire" a friend of the family or neighbor to look in on mom? Last time that I checked on this, home health aides were fairly reasonable (RNs not so reasonable!), but finding a quality, trustworthy person can be difficult.

[Couch Tomato]

Play asked a good question, especially with your mother's occupational background.

Couchie, is it possible to "hire" a friend of the family or neighbor to look in on mom? Last time that I checked on this, home health aides were fairly reasonable (RNs not so reasonable!), but finding a quality, trustworthy person can be difficult.

I think she just wants someone to take care of her. I hate to say this but I actually think she doesn't mind the "we'll take care of your every need' part of being in the hospital. And when she has good nurses that show concern and call her sweetie she's in heaven. When they expect her to do a little more she shoots daggers at them. I'm not kidding. I got home.. and I spent time calming her down and getting her settled. Then I went to email her doctor and talk to my sister about her. And she called me like 4 times... one time was to fix the covers on her. LOL. We do affectionately call her Betty Davis. Anyway, I don't mind doing all that but I can't watch her all day to make sure she takes the medicine or eat. That was my big job tonight..making sure she ate and drank and took her medicine because when she doesn't... it causes all sorts of problems and we land in the ER. Frankly it will be cheaper if the plan just pays for someone but we'll see. In the morning I'll ask her why she didn't take one of her Ativans...which I guess is like valium and I teased her a bit about not letting the flu kick her ass.

As for friends and family, I have a cousin who I may ask to stay with her while I'm gone to NYC...she has nurses aid training...but the child is just not dependable. She'd probably do great for the first couple days and then her boyfriend would be over and she'd be partying and my mom would be "ringing the bell" and she wouldn't even be here. I'm going to wait to hear back from her doctor..and if we don't get a referral I'll just pay my cousin to come over and spend time with her and help out now. I think she'd do ok with that..maybe 3 hours a day during the week. I live really close to work so can come home for an hour at lunch. I just want someone around to keep her company and gently remind her to take care of herself.

[Couch Tomato]

Well, I'm learning a little bit by going to these doctor's appointments with my mom and being in touch with her doctor through email. First we get the medicine..and now she is putting in a referral for home health care. Wow! I'm not sure how it works but this is definitely a step in the right direction.