Update on UTI

mimi427September 8, 2005

Well, the UTI turned out to NOT be a UTI...culture came back negative, so all of mom's symptoms are the disease...she is rapidly declining. Last week, it was combativeness, and agitation..this week we've added hallucinations and this morning she didn't know who I was...that was a very very tough one. There were other things today, like messing her depends, not letting me or her aide in the bathroom to help, and then she took off the depends and tried to wash them out in the bathroom sink, and it seemed to be everywhere...all over the toilet seat, on the back of her, on the floor...just a freakin mess. Then demanding breakfast this morning ten minutes after she had finished breakfast and trying to convince her she just had breakfast.

Last night,I walked outside for a smoke, walked back in and she asked me who were all the people that just came in...I was alone...You know, I knew this stuff was coming, I read posts from this site and one other and read so much literature on the subject, yet when it happens and happens so quickly, well, I guess I just wasn't prepared for it.

I looked at a nursing home last Sunday and I am very pleased with it. The facility is beautiful, staff seemed very nice and experienced but how sad to see all these people with Alzheimer's...just sitting and staring, or sleeping, or some were walking but talking and not making sense...it's so very very sad. I don't know what is worse. Trying to keep her with us an compromising my health, or placing her and then running there to be sure she's well cared for, so I'll still be without time for me...this is so damn depressing...

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Mimi, it's never never easy, but the day comes when you move your mother into that nice nursing home, and you start taking better care of yourself. Yes, you'll run back and forth somewhat, but not as much as you think. Talk to the staff at the nursing home about transition, and look for a local support group for yourself.

We are all behind you if you go ahead and make this decision now. You've got friends here to talk to. But yes, it is depressing. But it may be necessary to move your Mother before your own health is compromised.

It is good news that you found a nice place that you like. That's usually a very tough thing!


    Bookmark   September 9, 2005 at 10:03AM
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when my grandmother got sick in the 70's, there was no way to tell how much of it was dementia, how much stroke damage, or even how much of it was drug interactions, for that matter...

but no, I can't think of anything more disenheartening than watching a vibrant, intelligent, independant adult wander off into a world where none of us can follow...

and all we could really do was try and make some sense, and maybe some grace.

the 'people' she saw, fortunately, weren't scary for her- so we chalked them up to angels and ancestors coming to look in on her, and she seemed content with that.

we kept her with us until the end- and the end was hastened because we couldn't give the kind of care a decent home could- we didn't know what to look for, couldn't test for things, didn't have a nurse's eye.

later, I staffed nursing homes for 3 years, and did private care for another 4- and it's MUCH easier to care for, and connect with a patient who isn't a relative or a friend- many of the families wondered why their moms were so calm around me- I think a lot of it was that I didn't need them to be an adult- if they wanted to fingerpaint with their yogurt (and the bosses weren't looking) I'd let them, and wash them up afterwards. nor did I care what they called me- or if they called me a different name every time.

but I know that it broke my heart when my nanna called me Rae...

and the first day my father was sick enough that he mistook me for his sister, I barely made it past the curtain before I collapsed sobbing, and nothing my husband or the staff did helped.

nothing does, really. we lose them, and the loss of 'them' haunts us for as long as they endure.

but especially now, there is meaning in the idea that how we cope with personal tragedies define our lives...

and we often can BE more help when we let ourselves admit we can't do it all, and learn to accept the help that's offered to us.

    Bookmark   September 9, 2005 at 2:13PM
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Dear Chinacat:
You are such a good person to share this with me. I can feel that you know what I'm feeling, what I'm going through and I so appreciate you taking the time to try to help me through this, someone you don't know...you are a kind, gentle soul.
I need to hear that these facilities and staff are what she needs. I so want to believe that she will be better off there, getting the kind of care she needs and deserves.
Since my visit there last week, I have spoken to a few people that have had parents/grandparents there and they ALL have said wonderful things about the staff members and the facility, so that has helped me tremendously. I am planning to fill out the application this weekend and start the process of getting her name on their waiting list...thanks again,

    Bookmark   September 9, 2005 at 10:47PM
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Mimi, your mother has started on the road that she will walk alone. You want to be with her, but you aren't. She's in her own world. You really can't change that no matter how much you want to. However, you do have an obligation to care for her physical being as best you can. She needs to be where she can have care and aid when she needs it. 24 hours a day. 7 days a week.

    Bookmark   September 10, 2005 at 9:17PM
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:)the folks here and on the grieving forum were incredibly supportive of me this year-

and I was raise with 'pay it forward' long before they made a movie about it ;)

and there's so much that doesn't make it into the self-help books, or the caregiver books, or even talking with professionals- the biggest problem with professionals is that unless they've lost someone CLOSE to them- they really can't understand what the fear and uncertanty and ignorance of the condition does to us.

I was lucky with dad- it was a renal issues, and they fixed it enough that we could spend the last months together...

but I worked health care out of high school, and what finally broke me was the cruelest joke of all- there's almost always a period of lucidity at the very end.

so there's this moment when the fog lifts, and you can see them seeing you, and it 'clicking' that you have been the angel floating through the fog all along, and it's sweet, and it's heartbreaking, because it never lasts a week, and then they're gone.

it is possible to care for someone to the end- but about 85% of the time, the amount of physical and emotional trauma on both sides is immense. I've noticed that while dementia patients may not REMEMBER much- they tend to be more at ease with strangers, perhaps because we don't trigger memories too faded to grasp.

if you've found a good facility, the simple act of being able to sleep through the night without listening for a thump is worth it, and will give you the energy you need to make your visits full of love and life.

    Bookmark   September 12, 2005 at 11:42AM
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Once again, thank you. Bless you all for caring enough to share and I mean that from the bottom of my heart.

I visited a few more facilities and have decided to go with the first one. I've filled out the admissions form and mailed it in today. Now, the wait...I don't know how long, they have no beds right now, but of course, things change weekly. In the meantime, I'm doing what I've been doing, taking care of her, with many extra hugs and kisses.

    Bookmark   September 12, 2005 at 12:42PM
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Hello Mimi...this is really a tough time for you. MOre so than for your Mom. You have to just keep on doing the best you can for her. The incontinence and "crazies"are the worse, but she will get to the point where she will not try to "fix" the mess. That will be easier, but in some sad ways, more difficult, also. Each capability lost is grievable. I hope the placement goes smoothly and quickly for you all, since that is the path you have chosen. Shalom...Derry

    Bookmark   September 12, 2005 at 2:00PM
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I re-visited the facility again, this time without an appointment. I spent about 30 minutes talking to the head nurse of one of the floors. She's been there 16 years and told me that the majority of the staff have been there many years. She said to me "I don't have one empty bed on my floor, in fact, there isn't an empty bed in the entire facility and they don't pay me to tell you this. You will find places that are a little fancier, but you won't find a place better staffed and as experienced in dementia and Alzheimer's."

    Bookmark   September 12, 2005 at 10:53PM
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I almost cried when I read your post. To the point where I got my wife up to read it. I just posted about an hour ago in this forum titled Sundowners and seeing things.

Basically, 10 days ago my mom started hallucinating and becoming very accusatory towards my wife and I. She was seeing lights in her room and thought we were doing it. To the point it scared our eight year old son so bad, he ran out of the house crying. On top of that, we have a 19 month old toddler too.

She went to the ER and they diagnosed her with a UTI. The Dr. explained that caused the confusion and hallucinations.

On top of that, my mom has Parkinson's Disease and dementia runs in our family, so she probably has a mild case of that.

But last night, after doing pretty good all week, she told my wife that little kids were in our backyard on the patio in the middle of the night. She went on to say cars were parked in our backyard and people were laughing and talking. It was heart wrenching to watch my mom be so sure of herself on this. She was also trying to walk our dog in the house using her bra tied around her collar.

In the morning, she apologized to my wife for what happened and promised she wouldn't do it again.

Tonight so far, she seems better. But at one point she came out of her room and said she saw our neighbor in the house, which they weren't. That faded quickly and she seemed better.

We want my mom home as much as possible to the point where we are looking for a live in caregiver. She does pretty well during the daytime, although since the UTI she has been alittle more withdrawn, but can do things on her own (bathe, cook, clean, etc.) It is the night time that she is so different.

    Bookmark   October 4, 2005 at 10:25PM
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I did read your other post and honestly, it concerns me that you have young children with your mom living together. I'm no expert; I don't know if there is a problem having the kids around her, but I think I would discuss her symptoms with a professional and get their opinion about if she should be living with you and your kids. You sound like a very loving, caring son and I'm sure you want to do the right thing for everyone concerned. It is so hard watching our parents mentally decline. There's just no preparation for that at all. I have been taken care of my mom for over two years. At first, she was able to live in assisted living with my help, going over there and managing her bills and medications, but soon it was obvious that she could not live alone, so we moved her in with us last year. My children are all grown and have their own homes, so it's just my husband, me our three dogs and a cat. My mom has Alzheimer's and is in the end stages of moderate, bordering on end stage. The strange thing is she doesn't seem more confused at night; actually she seems more confused during the day. I understand that everyone goes through this differently; some wander and become quite agitated and combative and some just withdraw, sleeping for many hours. My mom is the quiet, withdrawn type, sleeping up to 15 hours a day. I am thankful for that. The only time she gets nasty is when there is any noise in the house; she has no tolerance for noise so it is a challenge keeping three dogs quiet. Two are older so they sleep a lot; the third is a youngster, a 2 year old Golden Retreiver, which I have had in doggie day care since she moved in, so he goes and plays and plays all day and comes home very calm and quiet and everyone is happy...ah...the things we do....
As of this coming Sunday, mom will be moving to my sister's home. I have reached a point where I realize I can no longer do this; it has very much affected me physically as well as emotionally. I wish you well,

    Bookmark   October 4, 2005 at 11:14PM
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* Posted by: desertrat2 (My Page) on Tue, Oct 4, 05 at 22:38

Repeating response to your other post.......

Don't be silly about this. Your first responsibility is the safety of your wife and children. Your mother deserves respect and care but cannot be allowed to threaten the safety and wellbeing of your household -- which she clearly is.

You must get her out of there and into some other place that can deal with her better without these risks. The time has come.

    Bookmark   October 4, 2005 at 11:26PM
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My Mom is in an assisted living facility, with level 2 care from the staff, and is having hospice care while living there. I see her daily, whether it be 15 minutes or an entire afternoon/evening. For someone who always wanted just her family to care for her, she has lovingly accepted the care of those around her now, even though she rarely remembers them by name. She is confused most of the time, but rarely agitated. There is a beauty and peace around her, a stark counterpoint to the critical,demanding,unhappy person she had become while on all the medication to solve the unsolvable. For a few weeks, she was "returned to me", thinking clearly; participating in life. Each day now takes us further away from that, but we made the right decisions, and it sounds like you are making them, too. Bless you, and may the new year bring peace.

    Bookmark   October 5, 2005 at 9:28AM
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Dear Susan,
It sounds as if you are at peace with your decisions too, and that is so important, and gives me hope that I too will come to terms one day.
La Shana Tova to you and yours.....

    Bookmark   October 5, 2005 at 10:09AM
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Mimi, you've received very valuable counsel here, so there isn't much I can add except to say that your feelings are normal and natural. It is frightening to put our loved ones into someone else's care in a facility. I always thought that Mom was getting the best care here (she was with us for 12 years), but after witnessing her interacting with the staff, how she'd light up when they gave her hugs and kisses, how much she enjoyed the games she could participate in and the level of medical care she's receiving
I couldn't be more pleased at my decision.

I had the same "shock" as you when I saw the Alz area for the first time: OMG! MY Mom doesn't belong here!!
But she does. And that's the sad part. She still knows me most of the time, but she lives in the past now, when she used to work: the people in her life now were the people she worked with in the past. She still asks about our grown kids, which is strange, if she's in the past, but I imagine she has lucid moments, too. Some days are worse than others.

Be at peace with your decision, Mimi, and re-learn to take care of yourself.

Blessings to All

    Bookmark   October 5, 2005 at 10:31AM
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One thing that the charge nurse told me in the nursing home where my Mom was is that very often, when the elderly are admitted to a nursing home and get adjusted, they feel "safe." They no longer have to worry (either consciously or sub-consciously) about "acting as if" -- in other words, trying to hide their confusion. They know that they are in a place where they will be cared for and are safe. For people like me, who struggled to "orient" my mother and correct her when she was confused (and she had a brain tumor, so this confusion was like a runaway train, believe me), it was a very hard adjustment to make to accept her and go along with whatever she said. It took me a very long time.

There's just no getting around the fact that it plain sucks to see a parent decline. I can get angry and rail at God or the world, shaking my fist and saying "why does this happen at the end of life??!" but it would do no good. It is what it is.

But McPhinius, you have some safety issues going on with your mother. Your young children are being exposed to trauma and stress, and they are far too young to process this. Your 8 year old ran out of the house crying? That is something to be taken very seriously. I understand you wanting to do the right thing by your mother, and respect her, but when you have children in the house, it's a whole different ball of wax.

    Bookmark   October 5, 2005 at 11:10AM
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You are right, with children involved. Our children have to come first. I am concerned with the ramefications of what they witness years down the road, long after their Grandmother passes on.

However, what I feel makes us alittle different than some of the other assisted living homes, etc. Is that this isn't constant.

It seems to be at night (classic sundowners) and she seems fine during the day. Now if they had a facility we could put her in over night (besides Holiday Inn), then that would be easy to decide.

Right now, she is her normal self, sweeping the floor. No confusion or hallucinations. BTW, it was the hallucinations that scared my son and that was during the UTI. Yes, I had to explain to him how it happened. But he was worried that people were outside. Her second hallucination about little kids in the backyard in the middle of the night, he was asleep and not aware that occurred.

But at 7pm each night, she seems to get depressed, crying and thinking we are being mean to her and want her out of our lives. She insisted last night that my wife wasn't helping her, all the while my wife was gently helping her walk to the couch. When she panics and goes through this in the evening, it's like all her meds dump out of her and she is frail and weak.


On a side note, I hope everything is working out for the best on your end.

    Bookmark   October 9, 2005 at 9:08AM
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Today is moving day...mom is moving in with my sister...I'm just a ball of emotions, trying to remain calm so not to upset mom...just hoping to get through today...Mimi

    Bookmark   October 9, 2005 at 9:59AM
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Mimi, it's hard, we all know that it is. Just remember that in your situation with your sister, this is the best course of action right now. It's going to all work out sooner or later. Take care of yourself.

    Bookmark   October 9, 2005 at 11:21AM
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Mimi, this must be a really stressful day, and I hope it all goes well. I agree with Froggy---take care of yourself!


    Bookmark   October 9, 2005 at 5:49PM
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I managed to get through today. I spent the morning with mom and she was quite anxious. It's so odd; she really doesn't show her emotions at all, it's just what she says. She told me she's just lived too long and become a burden to her children. I told her that's not true and how much I love her, and how sorry I am that I'm no longer able to care for her. She spent the afternoon at my other sister's house and I packed up mom's things after she left and took them over to the sister where mom's going to be living and helped put away mom's things and set up her bathroom the way mom likes her things to be and came back home and thought ok, I can do this, this is going to be okay. Until about 20 minutes ago, when I normally get her ready for bed and tuck her in and suddenly I felt so sad. I know she's with my sister and I know my sister loves her and will care for her, yet I'm feeling like I failed her. I guess this is what my therapist was talking about when she told me I will be feeling a lot of different emotions.
I've been in so much pain with this back of mine, and feeling so sorry for myself, having to do everything for mom and not getting any help and now I'm questioning what I did...talk about an emotional mess...

    Bookmark   October 9, 2005 at 10:23PM
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