I'm not sure I can place Mom....

Glitter53March 30, 2005

What a lousy position to be in. We've had Mom living with us for just over 10 years, and up until now, they've been pretty good ones. Particularly the early years.

Yet here we are today, talking about something I swore I'd NEVER do: place Mom in a LTC facility. Both her neurologist and our doc have confirmed that she has dementia/Alzeimers and whatever it is, it's come on so very quickly, perhaps only in the past month or two. Many of you know about her "visitors" in her room, not knowing the time of day it is (morning or evening), people watching her from the tv, but it's the little things that are so difficult to deal with now. Just getting her to the washroom...her slow, stooped-over shuffling, then the numerous pauses...playing with the tap water and not doing what she has to do, leaving the tap on, staring at her pill container and having to be encouraged each time that, yes...they're the same pills you take every morning...many times over, until she finally puts them to her mouth...Sitting with her as she's chatting, mostly to herself about nothing at all....Maybe I'm just not patient enough...maybe not understanding enough...

Then I think about a LTC facility and wonder what the heck is so great about that?! Who'd sit with her and do those things for her? Who'd make sure she ate enough? She'd miss her comfy bed! Her blankets! Her tvs!!!

OMG.....what can I possibly be thinking?! I know our doc says my DH's and my health is being compromised by caring for her and dealing with a sociopathic son (who lives out of our city, thank heavens, but emails anyway)...and my DH is going to need heart-valve surgery one day, and we're not getting any younger and time seems to be flying away for us to have the kind of retirement we always thought we'd enjoy.....OMG!!!

And today she seems almost normal.

I'm not sure what I'm saying or if I made any sense at all here...just wanted to vent, I guess...We have her care-supervisor coming over next week to do some paper-work for placement, and a rep from the Alzeimer's Society is coming on Friday to do an assessment, so at least we may know where she is and what her prognosis may be in the near future, and we can always say no if a room becomes available, but geez......I just don't think I can do it....I don't think I can place Mom in a LTC facility until she no longer recognizes us or knows where she is.....

Thanks for letting me spout off here....it feels safe, and I know I won't be judged....This is just awful.....

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Oh glitter...I'm right there with you. I'm so sorry you are going through this but it sounds like you have taken some positive steps. Getting help and guidance from your Moms Drs is so important and having an assessment for Alzeimers is the right thing to do. You are not alone in this, but right now, that does little to help with the way you are feeling. You are the one who is most involved, both phyically and emotionaly with your Mom. I am the same way with my Mom. I think it's diffucult to know when it is time to ask for help from others. It's also difficult to accept that help, or even to see it as being help, when it is presented. If only we had the gift of hind-sight now, not later.

I wish I could help you in some way. This is a time like no other in your life. This is your Mom and you want to do the best for her. I am keeping a good thought for all of you.


    Bookmark   March 30, 2005 at 10:53AM
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Glitter...My heart goes out to you! I am starting to see the same problems you describe both with my parents and my mother in law who lives alone. All are in their late 70's early 80's and have basically good health, but can start to see the changes taking place. It gets frustrating when you try to reason with them about going to an adult care home or other facilities, but if you feel that they may do harm to themselves or others thru carelessness then you are doing the right thing getting them in a assisted living situation. We recently had a case in town in which an elderly lady with dementia left the gas stove on constantly and her drapes caught fire. Terrible fire that ended the lives of two young chldren in the neighboring apartment! Sometimes in life we all have to make the most unfair, unpleasant choices that collide with our emotions for the ones we love. Please seek out professional help with the elderly from your senior center or dept, for the elderly to help comfort you and give you some guidance. My prayers go out to you!! Mark in Buffalo

    Bookmark   March 30, 2005 at 11:02AM
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Glitter, I'm so sorry to hear this. I've been there, so I know the shoes you are walking in right now.

I don't mean to be an alarmist, but I wanted to ask if your mother has had an MRI and/or a CAT scan. I ask because my mother had suddenly started developing symptoms such as you described. It came on all of a sudden, and while the doctor was going through the diagnostic process, he said he did not think it was Alzheimer's because it does not usually present like that. It is more like a gradual decline. As it turned out, my mother had a brain tumor. However, it seems as though you have covered every base and I hope her doctors have ruled that out.

Sometimes, there is simply no other way other than to put a loved one into a LTC facility. Unless they have the funds to provide 24/7 care in-home (and few of us do), when someone gets this ill -- and especially if they present a danger to themselves and others -- they really need to be placed for their safety. And believe me, I fought tooth and nail against keeping Mom in the facility. I thought the healthcare people were doing what they seem to "automatically" do to elderly people: shove them in a nursing home. However, over time I began to see things differently. Sometimes the level of care required necessitates the person being in a facility.

Your doctor is right: your health IS being compromised by taking care of a person to this extent. It is nothing to be ashamed of; it is simply a fact. You have done the very best you can, but what if you get sick? What will happen to your mother then?

If she does go to a facility, my best advice is to make yourself known early on. Visit as often as possible (I went every day). If I saw something I didn't like, I spoke up. I tried going up the food chain, in order not to make waves, but towards the end I went right to the nursing supervisor. This was my mother, this was her dignity, and I was NOT going to stand by and let anything compromise that. You need to be her biggest advocate. And trust me, the people in nursing homes who have family actively involved get the best care.

Perhaps it might help if you visited some of them in your area, so you can get familiar with them. There is nothing worse than having to make a decision under the gun.

    Bookmark   March 30, 2005 at 12:25PM
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You said "our doc says my DH's and my health is being compromised by caring for her". Please listen to your own doctor. It seems that one of the first rules of care-giving is that you have to take care of yourself. Because if you do not, you are no use to the person you are caring for. When your mother moves to the LTC facility, you will still be very very busy, because you will be there everyday. Listen to what everyone is saying, and start looking into facilities for your Mother.

Oh, my throughts and prayers are with you----what a hard decision!


    Bookmark   March 30, 2005 at 12:47PM
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Yes, Glitter, this is such a difficult decision with one's Mother. Two years ago my brother & I had no choice after our Mother's stroke & the dementia that had taken over so quickly. We did search out various places & she is now in her 2nd AFH where they do prepare her meals according to her diet. Really, her room is so cozy & we decorated it with her bed, comforter, own tv...those things that make one feel at home.
The one thing I have difficulty with is seeing her go from calling us 50 times a day to No Calls as she no longer knows how to dial. Knew this would happen sooner or later....it came sooner than expected. The main comfort for me is she is SAFE..not so many falls & with only 4 other clients the family takes care of her while we work, spend time with our spouses & maintain our home life.
Visiting her is usually pleasant now after her adjustment to living with others.
Please take care of yourself....there was a time I did not accept help with my former husband's illness for 11 years. I do understand.

    Bookmark   March 30, 2005 at 3:52PM
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Glitter: Have you considered hiring a caregiver for part of the day in your home? My parents paid a lovely, saint-like, woman who came and went over an 8 year period, first caring for Mom (dementia) and then Dad (stroke, macular degeneration). She could get Mom to do things for her that noone else could. Plus laundry, cooking, shopping, doctor appts and ER visits. My sister "found" her after one of her "patients" in the condo bldg passed away. A true Godsend. This represents the best of both worlds, because you are with her, but not handling all of the care.

    Bookmark   March 30, 2005 at 4:28PM
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Linda, my heart is breaking for you...I know how difficult it must be to make a decision about your mother. I have my uncle to care for, but that is not the same emotionally. I suppose you will know more after getting an assessment, and maybe that will make it easier to make a decision. I do agree with what everyone has said about your health being affected, and having an assessment is the right first step to take. My thoughts and prayers are with you also...

    Bookmark   March 30, 2005 at 5:34PM
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What an awsome group we have here! I'm teary-eyed reading your kind and generous responses to my outbutst.

Sooey, my Mom's 91, and yes, when it's a Mom who's done everything for her family, had more energy than most people half her age, it's terribly difficult and unfair to see them this way; I hope your Mom's light-years away from where my Mom is now...

Mark, what a coincidence about the stove! My Mom was leaning on our stove a few days ago, playing with the dials! I'm sure somewhere she knew what they were for, but I'm also quite sure she couldn't rationalize the danger she would have been in had she turned one on near her! How sad what happened in your town...those poor children...

Lasershow, yes she's had an MRI, and there's nothing significantly wrong, such as a tumor, etc. Her neurologist has done her own testing and determined it to be dementia/alzeimers. We have thought about visiting various homes in the area, and I imagine that if it's been determined that she's a candidate, we'll begin that process. I've only been in one as a visitor to a friend's Dad, and....well...it's not 'home', is it? I'm honestly not sure anything would be good enough for Mom....

Fairiegold: you almost make it sound feasible! ;-) Sometimes I can picture a more idyllic situation: nice visits, bringing her treats, flowers, taking her on rides...without the mundane duties that can frustrate both of us...Now wouldn't that be so nice???

Sharlee, I'm assuming your Mom was living alone when she suffered her stroke and subsequent dementia? If that were true for my Mom, a facility would certainly be the obvious choice, as it was for you and your brother. Having had her here for 10 years or so...I feel more like I'm failing in her care by placing her. Your Mother seems like she's in a wonderful situation, comforted by her own possessions and receiving loving care. We should all aspire to that for our family members...

Mary, yes, we too found an angel who cares for Mom each morning. She showers her, has coffee with her, gets her snacks, and is here for 1 1/2hours on Mondays, Wednesdays and Fridays, and 2 hours on Tuesdays, and 4 hours on Thursdays: my DH's and my "date days"...;-) On those days she has lunch with Mom also, and gives her "the full treatment", including manicure! Mom truly loves her and she's become a part of our family!

Patti, having to care for your uncle, I think, would be even more difficult. Maybe it's just me, but being close to Mom, and both being gals, I'm certainly more comfortable with caring for her....Does your uncle live with you? How is his condition? His age? I sure do tip my hat to you, Patti! It can't be easy...

I hope you ALL take the same advice you offered to me, and take good care of yourselves, too! It's funny...I didn't really feel anything coming on, just felt as if one day rolled into the next, that I was coping quite well, thank you, and then the restlessness began, the not sleeping through the nights, getting 'edgy', resentful, impatient...Not good for me, and certainly not good for my Mother. Thank heavens where I leave off, my darling Hubby takes over with his calmness and sense of humour.

Humour helps! ;-D

Blessings to you all...I'm sure I'll know more after her assessment on Friday....
Thank you so very much; I hope I can be as helpful to you one day!

    Bookmark   March 30, 2005 at 8:32PM
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Been there, too! You have a lot of valid concerns. It sounds like you have a good system in place already. The problems that are frustrating you ARE annoying, but there are so many rewards also, having her at home. You are correct in thinking that no one else will take the interest and patience with all the mundane details that you do. There is no right answer, nor wrong one. Only what feels best and works for you. Personally I found the benefits of my mom being at home FAR out-weighed the problems....and there were many. It will get more difficult as time goes on, so you may enjoy her while you can. Tis not easy. Derry

    Bookmark   March 30, 2005 at 9:44PM
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Linda, in regard to my uncle, he is 81, has lived with me for the last 7 mos., has dementia, CHF, is fecally incontinent some of the time which means I must get him in and out of the shower with the help of someone else in the family. He is incapable of doing a lot of things without some help. He is a lot like your Mom, when he is confused and seeing things that aren't there, trying to eat off a plate that doesn't exist, etc. and I think I can't take it one more day...the next day he is mostly coherent and almost "there." I can somewhat distance myself from him in a way that I couldn't from my mother, if it were her in the same circumstance...but we do what we can, up until the time we can't do it anymore...when it comes to our physical and mental health and our relationship with our spouses, friends and family suffer...then we will know we did all we can under the circumstances...but making that decision is SO HARD...I say again, my thoughts are with you at this time.

    Bookmark   March 31, 2005 at 12:52AM
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I think it really depends on what the elder's health situation is. Some people CAN be cared for at home, but some cannot. Every single healthcare professional I talked to (whether they were Mom's, mine, or friends in the field) told me that with her illness, she had to be in a facility. I actually thought about taking her out and trying to care for her at home, but something always stopped me. I had had knee surgery, I was exhausted, and there was this little voice (God, perhaps) telling me that I just could not do this. I am sure Mom's safety would have been compromised.

Eventually, she got acclimated to the nursing home. As the tumor grew, and her mental faculties declined, she often thought she WAS at home. I did not correct her. She thought my father, her mother, her sisters, etc., were all alive. It was hard for me, of course, to watch all this but she was in her own world and did not seem to be upset at where she was.

    Bookmark   March 31, 2005 at 10:53AM
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Thanks, Derry...yes, I recall when she was in the hospital: all the times running back and forth took so much out of my hubby and I; there just isn't one good answer, is there?

Patti: goodness! I know I couldn't do what you are doing (we are doing) if it wasn't for my Mom; you must truly be a devoted neice to care for him the way you do. Dealing with incontinence isn't my strong suit and it's my Mom! I think both of us have to weigh the advantages and disadvantages of having them live at home with us, particularly in coming to terms with how it's affecting our relationships with other members of our families. I'm just getting tired, too, I think. She's up during the night and sleeps in in the mornings while I'm soaking up my coffees! ;-) But when I'm up, I'm up, so I stay tired during the day....sigh....

Lazershow: you're right, circumstances will certainly be the determining factor(s). Her alzeimer's appt has been rescheduled to Monday. I think she thinks she's in the hospital: she's asked to speak to the nurse, and told her care-worker that I'm her sister...

Thank you all for your thoughts: right now I'm so tired, as she got up last night, then you know what it's like: you sleep with one ear open...;-) The alzeimer's gal is coming on Monday. We should know more then.


    Bookmark   April 1, 2005 at 9:25AM
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Hi! Simply checking in this evening to see how your day went. Will be glad to hear on Monday how things are with you after the assessment takes place. I thought about you off & on today when I was at work today helping a senior couple who are making the transition to a senior community.
My prayers are with you this weekend & on Monday that you will gather strength to see the bright days ahead.
Currently have a new situation with my Mother & will elaborate more later.

Take care. Sharlee

    Bookmark   April 1, 2005 at 9:14PM
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One of the things I cherish most about this forum is the the freedom to really talk about conflicting feelings when you are responsible for caring for an elderly person. It is a comfort to know you can come here, say things that many others would not understand at all, and no one will think less of you for doing it.

I read this thread this morning and I'm wondering how yesterday's assessment went, too. I think, Glitter, you are making some wise moves in getting things set up in advance. You DON'T HAVE to take a bed when it becomes available, but it's better to be prepared than to be caught "flat-footed".

I struggle with many of the same thoughts and worries. Mum is still pretty much OK, but we had a few bad days last week and I was thinking how tired I am of being at the bottom of the list all the time. She isn't a danger to herself/others, but she needs reminding about pills, isn't reliable about preparing food for herself, and can't handle her finances any more. She has been unwilling to walk, do her hand exercises, so I bumped the Zoloft to 50 mg. and we'll see if that and springtime improves her "attitude".

I hope this is resolved clearly for you. Hang in there.

    Bookmark   April 2, 2005 at 9:57AM
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Thanks Sharlee and Chelone....I'll let you all know how the Alzeimers assement goes tomorrow, Monday.
Sharlee....What new situation with your Mother? I hope everything's okay...! Thank you for your sweet thoughts.
And Chelone, yes...we are the only ones who can really understand our complicated feelings. I spoke with a girlfriend today on the phone and we just had to laugh about how her Mother, now in the last stages of Alzeimers and my Mother could watch TV and believe that what was happening there was really happening in their lives! I tell you....sometimes laughter really IS the best medicine!

Fingers crossed for tomorrow....that a true assessment can be accomplished!


    Bookmark   April 3, 2005 at 10:18PM
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