My Mom has two hobbies: worrying and complaining. Seriously -- those are her two activities. She goes to bed at eight then wakes up at two in the morning. She spends from then till breakfast lying in bed obsessing over anything worrisome she can think of.

For awhile, it was a routine appointment with her neurologist. When it was still two months away, she started asking about it every single time we spoke. Would I be able to drive her to it? When is the appointment? Is it today? Would we be capable of finding his office with only the street address and printed street-by-street directions to go by? Several times I had to take the calendar off the wall and let her go through it, because she also doesn't believe a thing people tell her. She had to see it in writing before she'd accept I wasn't hiding the date from her. She never did believe we'd really get her there until we finally did.

Now it's her meds. We fill the prescription, which is a month's supply, and she's content for a week. Then she starts obsessing that she'll run out. We show her the bottle. We shake the pills out and show her how many days are left. Nope. She nags and bullies till we give up and refill it ridiculously early. Then a week goes by and she starts it up again. After discussing it for twenty minutes and us reassuring her over and over that it will be refilled in time, she shrugs and says, "Well, it's just palliative. It's not like I'll die without it." As though we are surely going to let her run out, despite all that we've just said. It's so fricking insulting.

Too bad she doesn't obsess about the breathing exercises her nurse gave her to do because her lungs keep filling with fluid. Those she keeps wanting to skip. "Why should I do them?" she asks.

"Because you need to breathe to stay alive. It's not optional."

"But why should I stay alive? Why should any of us stay alive? What is the meaning of life?"

"No one can answer that for you, Mom. You have to answer it for yourself. Now do your breathing exercises. Why not make it an opportunity for meditation and focus on relaxing while you do them?"

"They don't make me happy." She glares at me as though I am responsible both for the burdensome need to inhale and and for the mysterious nature of life.

"They're not meant to make you happy. They're meant to keep your lungs open and we've already been talking about them longer than it takes to do them. Now breathe." And she does, until evening when we go through the same thing again.

It's like living with Marvin from "The Hitchhiker's Guide To the Galaxy." If you know that character, you've met my Mom. And if you're thinking she needs to see a psychiatrist, yes, she does. But she won't. Even if she went, if he prescribed meds for her she wouldn't take them. Her GP told me she's been doing that for many years -- he prescribes something for her complaints of anxiety, then she either doesn't take it or she takes it once, then comes up with a long list of unlikely side effects so she won't take it again.

I think that may be her third hobby -- presenting people with problems, then shooting down all the solutions that are offered to her. She sure is good at it. Drat. I can hear her walker creaking in the living room, so it's time to get her breakfast and to find out what worried her last night. Deep breath and here we go!

Speaking of Frogs. My neighbor brought down 16 frogs to the crrek on my property.Everytime I go to the creek to do something they jump and scare the poo out of me.Know I have to make sure the kids do not catch them and think they can have them as pets.

I hate to be a whiner, but the yellow type makes me nuts. After MB's grinning frog (the one that stole my Daddy's dentures) Let's get off the anger wall. I just can't keep up that full head of steam now>

That's the one. :-)

quote:

We're up in Calaveras County. :-) )

Home of the "Jumping frog of..." fame?

Thanks much. (It's my sister that's in LA. We're up in Calaveras County. :-) )

Oh waitaminute Op I thought your mom was down in the L.A. area??? Thats why I gave you his # lol
Does she live near our area? In that case Ill give you her #
waitaminute Ill BRB..........
Here the angel is:
Helping Hands Senior Resources
Address: 750 Mason Street Suite 203, Vacaville, CA 95688
Phone: (707) 451-8724
Fax: (707) 471-4039
Email: hhseniorresource@aol.com

We're up in No. Cal. but I'll give him a try. Maybe he can refer me to someone who's familiar with up here.

I called the convalescent hospital where she stayed, mainly to get the rates for their private rooms. (Gasp. $6000/month.) But the admissions lady remembered Mom and said she thought she'd probably do OK in assisted living -- she said Mom didn't need all that much supervision. And compared to the Alzheimer's patients, that's true.

So I spent most of yesterday checking out the info on assisted living/boarding places in the area. There aren't that many and it was easy to eliminate quite a few -- too big and institutional, too expensive, not enough services, etc. Finally, I found one right across from the the hospital that seems very promising. It's small -- only 13-15 residents at a time. The owners are both RNs and live on the premises. Fairly new, as it only opened in 2004 but I couldn't find any reports of complaints, and I found one glowing recommendation from a family member whose dad stayed there. And a news article because they brought in an exotic dancer one day for entertainment. Now that's a switch from Bingo. (Though they do have Bingo. Lord knows, they ALL have Bingo.)

On the surface, they look pretty good. They have two house dogs, and animals are really important to Mom. One is a German Shepherd, which we always had when I was growing up. I knew that would get to her, and it did.

She'd have her own room and would only have to share a bathroom with one other person. They had photos of their meals on their web site and the recommendation letter I read mentioned her dad gained a bit of weight while there. They help with showers, meds, and tranportation to doc appointments, which not all the assisted living places I checked did.

When my sister's up this weekend, I'll send her over to scope them out and if she approves, then my husband, mom and me will go over to see what it's like. I liked that the person I spoke to was obviously proud of the place and their care, and not in a sales pitch kind of way.

My main concern is still what happens when she needs nursing. A few assisted cares I talked to said the minute a resident is bedridden, they have to leave because their licensing does not allow them to nurse. This place said twice residents have fallen, gone to the hospital, then came back there to recuperate. He hesitated after mentioning the falls, as if I might be shocked or put off, but I figure with 15 elderly wandering around, falls are inevitable unless you assign someone to each person and even then, they'll probably happen. He said they'd never had to transfer a patient to a nursing home and that three of their residents had been staying there since they opened, which I think speaks well for them.

I need to find out if they have any experience with residents with Parkinsons but the owners being RNs is encouraging. They don't have physical therapy but they do have twice daily exercise sessions, and the halls look wide enough to roam. They're not alarmed, but it is a fenced, gated property. Mom isn't inclined to escape attempts, so that sounds OK.

I printed pictures of the place from the web and went over it with Mom. She wasn't totally against it but not thrilled, either. I said it was just an option and she asked if one of her options was still staying here with us. I said it was but that I was no longer sure that was her best choice for happiness, since she didn't feel at home here any longer, and she might well have more independence in assisted living because she wouldn't constantly have a daughter hovering behind her, worrying.

She said she had realized that nowhere was ever going to feel like home again. I felt so bad for her. She said no one remembered her when she was a little girl, which is true. They're all gone now but her. She did mention one of her aunts, who was much happier in a nursing home than with her family, so I think she is considering it without too much dread. I pointed out that since it's not a nursing home, the residents are her age but not so out of it they're beyond conversation. While they may not know her personally, they share her sense of history and would know exactly what she meant when she talked about what it was like during WWII, for instance. That seemed to perk her up a little bit.

She wondered how often she would see us if she moved there. I said we'd see her every day for the first few weeks until she felt settled, then I'd call every day and we'd visit on the weekend and take her out. That seemed OK with her.

The one thing that bugs me is they have a vacancy RIGHT NOW. I wasn't ready for that. I expected a wait of a few months, at least, for any of them. Though it's tempting to snatch it up, I'm not going to rush. If we miss this vacancy while we ponder it, we'll wait for the next. Even if she feels positive about a new place, it's going to be a shock and I don't want Mom to be sitting there wondering "What happened?"

Bingo Torp I completely forgot about those they are so new around here.
There was a wonderful facility up here in the Sonoma area that had the different levels of care all in one facility. Talk about a smorgasboard of activities!
But to answer your query Op its the facility who questions you first accesses her needs and if its a good fit they then speak to her PCP and get everything coordinated from there...Oh yeah and about 45 minutes of paperwork for us
Sign here there here there right there here here here.....here there Ya git da picture?!
Oh I know theres a guy down in your area that helps people out that a lady up here gave me a reference to *GREAT gal BTW she helped me SOOOOO much during my time of need with my MIL I could just hug her to death!*
Waitaminute lemme find it BRB.............
Ok heres a copy of it Op
He runs an organization down in your parts his name is Chris Guitierez (sp?) Org. name is So. Cal. Seniors
Toll free is 1-866-697-3646
If for any reason you can not get through on that line the alternate is 1-626-795-7789
Tell him Melanie Richardson of Vacaville "Helping Hands" referred you to him

I can relate to every word of your posts. Been there, done that.

Since mom is still ambulatory, etc. she may be a candidate for assisted living. Some facilities are better suited than others relative to memory care, etc. so you'll probably have to visit a number of them.

While they are expensive, they are half the cost of a skilled nursing facility and will afford more social opportunities for mom. (Field trips, card games, etc.)

One that we visited while searching had a menu of services so that as they declined, you could increase the level of services according to their need. This way they start out in the lest restrictive environment, and you are less likely to have to move them again when their condition changes.

The terminology can be so confusing. I never even searched under "Board and Care Homes" so that's useful -- thanks.

I don't know about levels of care. Though Mom is much more clear and ambulatory than others at the convalescent hospital, Parkinson's makes it inevitable that she will some day need full time nursing, and no one can say when that will be since the disease affects everyone a little differently. I wonder if she wouldn't do best somewhere that has different levels of care, so she won't have to go through the trauma of a move twice? Anyone have any thoughts? Who assesses their needs, anyway? The facility you're applying to? Her doctor? Everyone?

Op your in Cali so look into Board and Care's its usually operated out of a home rather than a facility and I have to say for my MIL it made all the difference in the world.
In a NH she laid in bed all day long and like you there are only a few good ones in Nor Cal and if they are good their a fortune.
Honey I want you to remember something in all of this, you are NOT failing her for a moment.
If you were you wouldnt be giving a dam you would be leaving her to her own devices if you were failing her.
Everyone is afraid of change especially an elder in this situation they are going to mope a bit thats what they do. It usually takes about a month to "fit in" after that they do often respond positively to the new environment.
My MIL still complains/gossips about different folks in the B&C but I take it with a grain of salt always.
She even has a woman that shares her room who actually mothers her and she loves it but let me tell you at first she couldnt stand this woman.
Things change....
Give yourself a break now trust me cause the next thing you will be talking about is the care which goes into this side of CG....she just changed addresses not caregivers sweetie

quote:

sometimes I think we can be a bit over protective of our LO's which sometimes makes it more difficult for them.

I think so, too. Mom always wanted to remain independent, which is one of the reasons we moved in here. But I think a nursing home would give her more independence than she gets here, which I didn't anticipate.

At the convalescent hospital, she could go walking when she chose and the whole place was set up so that was possible. All flat floors and she could go outdoors without confronting stairs. And they had a church choir come in and sing regularly, which she enjoyed very much.

And there were tons of people to watch and talk to, which is one of the few things that still really interests her. If our neighbor goes outside, she is right at the window wondering what he's doing and watching him work. In fact, she'll stop mid-sentence to do this. (He's a nice man and my parents helped his parents through some emergencies in their old age, so he is very kind to her.)

My sister is coming up next weekend, so we're going to sit down and have a family meeting then. We have a regularly scheduled doc appointment Thursday, so I'll mention this to him then to see if he has input. I know Mom will balk at first because it is change and she resists that with all her will, but I'm also sure anywhere decent will have a waiting list, so she'll have time to adjust to the idea. Or time to fret about it and be sad, I guess.

As I expected, she was like a little girl trying to be good yesterday, which broke my heart. If I had to choose, I think I'd rather have her feisty which is more like her. I don't want her to spend her days trying to please us, especially when she doesn't really understand why we want these things of her. She didn't clear her own dishes and she didn't try spot cleaning the floor, and she made sure we noticed. She asked my permission to use a gatorade jug filled with water on the potted plants because she can fill and carry that herself. I wanted to cry. I don't want my mom to be angry with us but I don't want her acting like a whipped dog, either.

She did, however, keep nagging us to move the hose when we'd just moved it five minutes before, and she did sneak out to the kitchen and check that I wasn't burning dinner, and she did fret aloud that the bills weren't getting paid. And she counted her remaining meds, as always, to be sure we weren't going to let her run out. Her trust in us, (and maybe anyone), is zero which drives my husband bonkers. I've kind of gotten used to it.

I know what you mean about someone taking the false accusations seriously but any examination would show she is not abused. I've actually managed to get her to gain a pound and she's always clean. I don't worry about myself, so much, but I do worry that if they did believe her, she'd find herself in the state's custody and wouldn't like it. I talk to her doctor often, though, so I think he's aware Mom can be a drama queen and sometimes she's completely irrational. She doesn't trust him, either, so he knows what it's like for her to accuse people of things that aren't true. She thought her therapists were experimenting with her and her doctor prescribes meds just to see what they'll do, for instance.

There are only three or four facilities in this area, though there are more in the L.A. area where my sister lives. I think she'd rather stay up here, since Mom has always hated L.A., so that's what I'll try for. I'm reading up on the web about the reports on the local places and I see what Mae means. Most have a rating of "fair" but none have zero complaints. I did find one that did exactly what Mae warned of -- got closed down for abuse and just reopened under a new name. Horrible.

Maybe I can get Mom into the same convalescent hospital where she stayed before. It's long established, she liked it there, and she liked the food. The only problem was she was in a three-to-a-room area and that meant six-to-a-bathroom, which was ridiculous. But when we'd walk the halls, I saw there were single patient rooms that were spacious and nice, and were furnished with the occupant's things. We'll see what those cost and maybe put our names on the waiting list. I have already figured out Grammy's nursing home is a think of the past, unless a person is fabulously wealthy. A shame because it was the kind of place every elder should have available for the twilight yeares.

I know Mom worries about what would happen if she goes to a nursing home and then runs out of money. I worry about that, too, since it would be years down the line and I assume her Parkinson's would be all the worse. From what I've read here, many places will have them out on the sidewalk the minute the money is gone, so I want to be careful. I've calculated that if we sell her house, she should have enough in the bank to cover six or seven years. I'm dreading bringing that up in conversation. "Well, do you think you'll live longer than that?" What a question to contemplate. I wish we weren't thinking about selling in this market. She would have had considerably more had it been sold three years ago but what can you do?

Thank you all for your support. I don't like to fail and this feels like failure but I also don't want to be selfish and make Mom miserable while I try to become someone I'm not. And I don't even know if she IS miserable. She can say things she doesn't remember the next day and she'll deny ever thinking them. She was asking us yesterday how long we think we can do this, so I take it she was back to wanting to stay at home.

Difficult and heartbreaking. That's how life has been ever since Dad died in March. He is sorely missed.

Op I agree you should seriously think about putting your mom in a facility simply for your own protection from these accusations she is making.
They may not be true but it only takes one person who knows NOTHING about these diseases to take her word for it and not yours.
APS is wonderful IF they dont find any abuse, just ask me
But if they do...
Look Op I put my MIL in a Board and Care facility because safety was my primary concern and I can tell you she is happy where she is at even though before she wouldnt budge on the subject she never wanted to live anywhere but with us and I have to say sometimes I think we can be a bit over protective of our LO's which sometimes makes it more difficult for them.
Im like a bull in a china shop I never took no for an answer from a PCP I made sure things were just so she was never allowed out of my sight for more than a few hours and then it was with my husband, her son.
When they say it feels like a prison I think I have to agree although we are just doing the best we can under the circumstances not to mention in my case this is my MIL so I had a husband to answer to also in this.
Talk about a stressful situation!
Sure I felt guilty at first but when I saw the smile she had for me a month later I knew I did the right thing.
Think about it sweetie your really not giving up on her your allowing her to experience other people her own age that arent related to her or obligated for that matter it does make a difference.

Merriwind, I agree with your post.I thought a facility could care for my mother in the worst times.That was the worst decision I could have made.
When I was prepared to bring her home something happened that caused her demise.Not only was she neglected but they killed her with neglect.All my meetings, trying to get cooperation failed.I cared for ger for years.They had her for 3 months and she was dead.
They covered their asses so well I could not prove anything.
This places use the term care faiity to loosley.They are all about money .
Some are fortunate to find nice ones.Far and in between.
I hope , whoever is seeking one will do their research .Do not depend on the governments evaluation.They are part of the problem.They, too have much to gain financially from the facilities remaining open.You show me one facility that closed and not open under another name.
My aunt and hubby lived so long because they remained at home under my watchful care.
Sad, all the money given to these facilities could provide care at home at less the cost.Thank big lobby for that.
It is difficult to care for a person.Some , it is nothing but stress.My thoughts are always on the afflicted because they are a victim not once but twice.

Sometimes, taking care of someone the best way you know how to take care of them means just exactly that - whatever the reason is that you can no longer care for them, find a good place that can. It is much easier said than done, and I don't think you'll find a place quite as nice as Grammy's anymore. We'd ALL like to find one of those for our loved ones!
Best of luck in your search. Sounds like all 3 of you might be leaning toward making that decision, and looking for alternate housing. Maybe even making that decision will alleviate a lot of the tension in your home.

It takes many things to personally care for a brain-damaged loved one. Not everyone can handle it. It isn't a task that sheer intellect can get one through - it must come from the heart with an understanding that escapes my ability to put into words. I simply think of it as "some folks have it to give and some folks don't." Maybe it's like "horse whisperers" - some people are "geriatric whisperers." None of us have all wonderful talents in the same package. What comes naturally to one person is incomprehensible to another.

I agree that your mom would do better in a facility. The socialization needed by nearly all human beings is far more available there than in a private home. Your mom is still at a stage where a NH would afford her the best potential for having a life of her own in a reasonably caring, safe environment.

I hope that you can find a suitable facility nearby. I think it would be a godsend for both you and your mom. There will be plenty for you to do managing and monitoring her care in a facility! There are a lot of great ideas for financing, etc. in the legal forum here... Don't overlook a reverse-mortgage to help with finances.

Best wishes on finding a win-win solution for all concerned!

quote:

I think professionals would manage her better and I honestly believe she would be happier. She thrived on the environment in the convalescent hospital when she was there for two weeks.

Here is some advice from one of ECO's front page contributors Edyth Ann Knox:

We know that we have limits as far as our abilities, the level of stress we can endure, and our personal patience. We willingly accept these limits and recognize that we can rarely change them. We know that we can not be all things, not even some of the times.

For more read: http://www.ec-online.net/Knowledge/Articles/beingacg.html

quote:

If this is the way she's always been, how did you handle it before?

I ran away from home when I was seventeen. We were estranged until I was in my late twenties. After that, we got into the habit of a weekly phone call and holiday visits. And I have to admit, I often found the weekly phone calls burdersome because of the fretting and complaining.

The fight went on forever yesterday. She told my husband all I ever do is yell at her (a lie). She told him he should take charge of her. She begged him not to leave her alone with me, as though I spend all my time beating her when I am a pacifist who would resort to violence never. He was way too smart to fall for any of it, though he was able to soothe her, a bit.

She told me that "Men complain of a problem because they want it fixed. Women complain of a problem because they want to vent." This was her excuse for complaining every single day about her bed but refusing to allow us to replace it. Apparently, she wants to complain and bitterly resents it when people attempt to resolve an issue that would deprive her of the opportunity. I'm sure she'll be on her best behavior now, for anywhere from two days to a month. That's the pattern after a tantrum.

We all talked at length about nursing homes, once things calmed down a little in evening. I am again feeling she would be better in one. People would (in theory) be polite to her no matter how nasty she was or how braindead her actions. They also would deal with her in shifts, which makes it easier AND there would be always someone there to chat with. She denies that she wants people to chat with but it is clear she needs it.

I asked why my grammy spent her elder years in a nursing home. (Which I adored. Beautiful place, antiques everywhere, jigsaw puzzles in the conservatory, always smelled like lavender soap. As a kid, I thought it was a pretty cool deal.) Mom said Grammy felt she didn't get along with any of her children, so she arranged it herself when she was widowed. I gather Grammy's temper made Mom look mild by comparison but, by God, at least she had sense enough to prepare for the inevitable and deal with it herself.

I've heard what people are saying: you can't expect gratitude, you can't expect civility, you can't expect memory, you can't expect safe behavior, you can't expect sensible decisions. But without any of those things I find it very difficult to serve her meals with a smile on my face. Not when I DO remember that she tells people I abuse her, though I am doing everything in my power to make her happy. I think professionals would manage her better and I honestly believe she would be happier. She thrived on the environment in the convalescent hospital when she was there for two weeks.

I have some questions about the levels of care and especially financing but I'll find the right forum area for those queries. Thanks for your concern. Didn't mean to vent so long this morning but I'm still really shaken. Drama's OK on the TV but I do not like it in my life. :-)