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Old 10-21-2011, 03:29 PM   #1
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need advice

My mom is in a secure spot for dimentia. She is wearing depends all the time now and her room smells of urine, terribly. I visited her yesterday, and she introduced me to everyone as her sister, not her daughter. She repeatedly asked me about my family. She told me that her husband has left her, he acually passed away 5 years ago. She said that she doesn't know where her mom is. She said she saw her about 2 weeks ago and that she was fine then. She said that someone has told her that she died. She is worried that she killed herself. My mom's mom died many years ago, in a nursing home. I am the only remaining family. My brothers have both past away, and my husband and I have 2 sons in there 20's. They are the only grandchildren. Mom seems to have lost track of them in her memory. I visit each week, and the 4 of us were together for Thanksgiving last week.

My question is, should I tell her that her husband, my dad, passed away?
I am not sure where she is in her mind, considering a time line. I think she is in her young adulthood. She is talking constantly about moving and getting a job.

She is in the high middle stage of dementia and is declining at a steady place.

Any advice or help is much appreciated.

Sherry

 
Old 10-21-2011, 07:22 PM   #2
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Re: need advice

Sherry...welcome to our world. Sorry you are here but we all are so we are glad you found us.

To answer your question. NO! Please don't add to her confusion by telling her something that she can't comprehend. My mom's husband died and when she forgot it a few years later, we would tell her that he was on a business trip in Seattle. A place that he went to often on business. When she asked about her mother we told her that she was in the kitchen making chicken and dumplings. We told her whatever was familiar. If you tell your mom he is dead she will only forget and you will have to break her heart once again by telling her he is dead. She too thought he had left her..so we were always telling her that he would be back in two weeks.

And it really is ok if she thinks you are her sister. So what. It doesn't matter. She knows you are someone she loves and someone who loves her. That is what is important.

Wherever she is in her mind....join her. Don't try to bring her back to our world. If my mom thought she was 16...fine...I asked her about what it was she was doing at 16. It becomes a game you will become adept at. And you will enjoy your time with her, learning who she was then.

Good luck with it all and come back to us often ...we surely understand!!!

Love, Meg

 
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Old 10-21-2011, 10:54 PM   #3
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Re: need advice

Sherry, I echo what Meg has said. I am glad you have found us but sorry that you needed to find us.

To answer your question.... as Meg said.... NO. Each time they hear the bad news it is new and fresh to them. They will react, forget, and react again. It is not fair to them for us to expect them to handle such devastating news repeatedly when they are not able to process or retain it. At times they will accept it and become upset, or they will deny your truth and get upset. Either way it is not a good outcome.

I do what Meg suggested. My Dad died March 2010 while in the same locked facility with Mom. To this day, Mom has no awareness that Dad is gone. Sometimes she will say he is with me (even though I am standing there beside her) or his Mom. If she ask, I say he is working, at a meeting, with his Mom... or whatever story sounds plausible. There was a time that Mom would say Dad had left her. I would just chuckle and say... Yep, left you to go to work. You say what is necessary to make them comfortable and content... not drag them into our reality. You go into their reality... and enjoy the journey

I do hope you return. We do understand and this is a great place for advice, experiences, and just venting

Love, deb

 
Old 10-23-2011, 04:57 AM   #4
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Re: need advice

Thank you both for your helpful advice. There is always someone in my life trying to give me advice, someone who does care about me, but does not understand alzheimers, or has experienced it. So, I truly appreciate the comments and support here.

I have said to my mom that dad is on a business trip, just at work, etc...but I have also wondered about the truth. Thank you for answering this question.
As for her calling me her sister, I understand that too....I think she is back in time with her family. She asks about her mom all the time too. I guess that selfishly I would love to have her remember me as her daughter, but understanding the disease, I get it. Honestly, it breaks my heart, as she is the last member still alive, from my childhood. Both my brothers, and my father are gone. And we have no remaining relatives. I know it is about her, not me....and I am in the moment with her when I visit her, but when I get home, I am exhausted, sad and very angry. All emotions, that everyone here all feels. I get that. It sucks, and I have certainly heard that here before too.

Another question, my mom is wearing depends, 24 hours a day. And, she is on a supportive care floor, with minimum assistance. Redirecting, meds and all meals. When I visit, her room smells of urine. I know she has had accidents on her couch and chairs, and I am sure in her bed. The bed belongs to the facility, all else is hers. What can I do to help with this. Would buying backup bedding, comforter help? Who cleans the furniture when it is soiled? I am going to call the nurse in charge on Monday and ask these questions. Just thought maybe someone here has experienced this.

Thanks so much for your support and help. I am a regular reader, have posted a few times...and am so grateful to have found this site.

Thanks,
Sherry

 
Old 10-23-2011, 06:42 PM   #5
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Re: need advice

Sherry...

my mom too was in depends 24 hours a day and occasionally her room would smell just awful. Here are a few things I did to help. First I bought two identical spreads for her bed...I always kept the spare in my car. If her spread on her bed smelled, I took it home and washed it ...and used the one in my car. Then I would replace the newly washed one back in my car for the next time it needed to be switched. It is important to get identical ones...they need routine and having the same spread helps with the continuity. My mom always knew her room because of the spread on her bed and because of an afghan of hers I kept in the room.

Next, I never showed up without a tote bag with essentials in it. One was a can of carpet cleaning spray and another was a lysol sanitizing spray. I used to spray the heck out of that room!! I would spray the chairs, the bed, the floors..and then get mom out of there and let the sprays do their work. It won't happen overnight but with daily use it does help!! I handled all of that but if the bathrom smelled of urine I would spray it too but then immediatley point it out to the nurse on duty so she could call housekeeping. I stayed on her til they came and scrubbed that bathroom down. One time I was getting no result from her so I ran into the head guy (on purpose) and told him it sure did stink in mom's room and I sure would hate it if he was showing the place to a new prospective resident. It was scrubbed by the next morning!

And listen, people can give you all sorts of advice but unless they have dealt with this personally they have no idea. NO idea. Listen to what they say...then take it or leave it. All the while smiling your best "thank you very much" smile. Then do what you think is best.

As for the emotions. Every one of them is valid. But make sure you listen to your head. It is the disease...it is not her. It is not her fault.
Believe me when I say I have had every one of those emotions myself. It was coming back here daily that kept those emotions in check. It is so important to hang with people who understand and can guide us through.

Love, Meg

 
Old 10-23-2011, 10:22 PM   #6
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Re: need advice

As for the emotions, yep we have all felt them all... repeatedly. We put on a good face for our loved ones and truly do understand but want to punch something because it is what it is. It does help me to know that I have made it this far and therefore I will be ok until then end. I know this disease is teaching me patience, understanding, tolerance, and compassion. I know it is making me a stronger person. If I can do this... I can do anything! I can't fix it and make the disease go away... but I can make sure my Mom has the best care possible! Then I have succeeded. If I can help somebody else going through this experience than there is purpose in what I am going through. My anger seems to subside when I find something positive to hang my hat on!

I have not had a problem with odor. Mom has a plastic sheet over her mattress. Linens are cleaned as soon as she get ups if necessary.... including the spread and blankets. All incontinent supplies are taken out of the bathroom immediately and put in a central container that is emptied several times a day. The residents are taken to the bathroom to "freshen up" several times a day so there is minimal leakage. If there is an accident it is cleaned and sprayed as soon as it is noticed. Many times there is leakage or odor because they are not changing them often enough.

Along with what Meg suggested I can also attest to the wonders of "Natures Miracle". You can get it at the pet store. It was originally developed for use in hospitals for biological odors but has found a huge market in pet odors. I have used it for our puppy, Mom's bathroom, and even when the freezer died and I had meat juices in the concrete. It comes in a spray bottle and is the best at eliminating urine odors. I have even added it to a wash load and put it in a carpet cleaner. We did use it on an upholstered chair that Dad had a couple of accidents in and the odor dissipated. I have used it on ceramic tile where the odor has seeped into the grout with success. I love that stuff!!!

I do understand those well meaning people that have had no contact with this disease and their advice. It is truly hard to grasp the concept of this disease and what is necessary to get through it. This is the only time we don't listen to what Mom says and take it to heart. This is the one time that we don't divulge the whole truth. This is the one situation where we have to lost all that we know about being a daughter and become Mom's advocate in the strange world of dementia. It turns everything we know upside down. And most that have not been impacted by this disease just don't get it. ... and why I love this place with those that are in it and get it!

You are doing good thing Sherry keep it up!

Love, deb

 
Old 10-24-2011, 05:38 PM   #7
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Re: need advice

Again, thank you both so much.

I will shop and pack a resource bag before my next visit. The two of you make life for us newbies so much easier.

Many many many thanks!!!

Sherry

 
Old 10-24-2011, 10:52 PM   #8
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Re: need advice

Just wanted to say I do what Meg did--I bought two identical bedspreads (screaming pink--Mom's favorite) and I swap them out when one gets soiled. The same with her pajamas--she has two identical pairs with gigantic bunnies on them from last Easter, and I always fold them and place them on her pillow when I visit. She gets a big kick out of that! It's become part of our routine.

The only time I told Mom someone had passed was when it was a dear friend who visited her every week. She would have thought he stopped coming to see her because she had done something wrong, had somehow offended him and that he was angry with her. So I told her, several times, and eventually she stopped asking about him.

Occasionally she'll ask me about a member of the family (she's outlived all eight of her brothers and sisters, and my dad died when I was a child). If she says, "my mom's dead, isn't she?" I'll confirm it and change the subject, but if she says "how are the folks?" I'll say "they're just fine, last time I checked." And I'm sure they are.

I wish I was there to give you a big hug, because I know how damn lonely this can be. I have a brother, but he's not around and I'm literally the last one standing. It's hard not to have anybody left who "knew you when."

Today I was--at various times--Mom's sister, brother, daughter and God only knows who else. I just go with it the best I can. Right now I'm also the worst daughter in the world, because mom has fractured her other hip (the first hip started us on this merry-go-round), and she cannot comprehend that she can't just get up and walk out of the hospital. So forgive me if I'm rambling, but know I'll be thinking about you and stay close to this board--it'll help you keep your sanity!

 
Old 10-24-2011, 11:04 PM   #9
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Re: need advice

Oh, I forgot something (sorry, I'm just really tired tonight):

When Mom broke her first hip, she heard the crack and somehow got it into her mind that she had shot herself! She was really paranoid that it "would get into the papers." Their poor little brains are very creative when it comes to filling in the blanks

So don't be surprised if she comes up with all sorts of wild scenarios. Mom thinks I have little children at home (which is why I can't visit every day), and every time EMTs come to her NH to take someone to the hospital, she thinks they're all being held hostage! Needless to say, I try NOT to be there when they are testing the fire alarm

 
Old 10-25-2011, 09:12 AM   #10
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Re: need advice

Kern... The only sentence my Mom put together in the last two visits was ... "I know what you did?" I don't know what who did but she gave me a stern glare. It's even more difficult when they are not able to communicate and you are guessing at what wild delusions is occupying their minds

The hit fracture story is such a classic. Your Mom remembers the noise and the pain afterwards but little else. It's the way the demented brain works. Some bits of information stick and many do not. So if there was a pop and pain... it must be a gunshot. If you break an incident into it's minute pieces and cherry pick the ones that fit her reality, sometimes you can see where her reality comes from.

I am so sorry she is dealing with the second hip break and is beyond understanding. It does make it so difficult for all of you. I hope she has a speedy recovery and is able to go back to her level of normal (whatever that may be) soon.

Love, deb

 
Old 10-25-2011, 02:59 PM   #11
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Re: need advice

Thanks for the well wishes, Deb

I didn't mean to hijack keaner's thread, but I will tell you that mom made it through surgery today with flying colors. As you know, the fun will really begin when she's back at the NH trying to do rehab

"I know what you did!"--LOL!! You are SOOO busted

I was informed last night that "I follow the rules too much" because I wouldn't let her postpone surgery until next week, "after she's had her hair done." Gotta love it!

 
Old 10-25-2011, 03:50 PM   #12
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Re: need advice

I am so glad she made it thought the surgery and you are right... the fun just begins!

At least my Mom didn't accuse me of following the rules You have to find the humor in what they say and do. It's finding the best in what we have been given. Even if you have to break a few rules hehe!

What was really funny about Mom's comment... I had just left the Facility Director's office. We had a heart to heart

This disease does teach us to be creative, patient, innovative, compassionate, and move outside of our comfort zone.

Love, deb

 
Old 10-25-2011, 05:55 PM   #13
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Re: need advice

Hey there Sherry -

I'm getting caught up on the boards. Just wanted to say hi and I'm a fellow traveler on this dementia road and life in dementiaville. You're getting advice from the best so I don't have anything to add, but did want you to know there are lots of us here to lend an ear and support .

I like everyone's suggestions about the matching bedspreads. Keep us posted as to how you're doing!

 
Old 10-25-2011, 06:18 PM   #14
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Re: need advice

Quote:
Originally Posted by Gabriel View Post

What was really funny about Mom's comment... I had just left the Facility Director's office. We had a heart to heart
You go, Girl! I've been lurking a long time and am quite familiar with your battles to get better care for your Mom and all the other residents. You inspire me

We've been going through quite a bit of upheaval at Mom's home--staff turnover, inadequate housekeeping, new kitchen staff, you name it. It's a constant battle. Half the staff cringes when they see me come in

/vent mode on

I try very hard not to take out my anger at this disease on them, but I call them on it when they can do better, and I don't tolerate dishonesty well AT ALL! Don't tell me you KNOW Mom didn't fall when I know you're not in her room 24/7--tell me you're not sure what happened. I don't blame them for the falls--I took a calculated risk knowing Mom would never be happy if they didn't let her move around and I expect her to fall. So I don't want to hear the bull.

Don't tell me she has the "right" to refuse to give you the urine sample I asked you to get to test her for yet another UTI--just find a way to get it! If she were able to look out for her own interests, she wouldn't BE in your freaking nursing home!

And don't expect me to do YOUR job--if I'm paying you $11,000-$12,000 a month, I expect you to have someone empty the trash daily and give my Mom a shower at least twice a week. You're supposed to be making MY life easier, so I can enjoy what time I have left with my mother.

/vent mode off

Of course, when someone does a stellar job I immediately fire off a letter of commendation and send it to their supervisors, administrators, corporate bigwigs, you name it. Some of the staff is just fabulous. It gets bad, and then better, and then bad and better again. Sometimes all in the same week--LOL!

P.S. Don't tell mom, but I break the rules every chance I get

~Kren

 
Old 10-25-2011, 07:30 PM   #15
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Re: need advice

Oh Kren... we were cut out of the same cloth. You have hit some of the very gripes that I have been spouting for almost a year now. What is so sad, this facility was top rated when Mom and Dad moved there 2.5 years ago. Then there were sever administrative changes and it plummeted.

Just yesterday I walked in, looked at Mom, and knew something was different. Did Mom sleep last night? Oh yeah, she left good all night. HUH? How do you know since you didn't come in until 7 am? Please tell me why Mom looks like she hasn't slept in a week then. Your Mom is fine. Uhhh.. no she's not. Something is different!

Chips containing Olestra being served. The fat substitute Olestra is know to cause diarrhea. My Mom has had diarrhea for 8 week. Why give them to her?

The laundry ruins clothes, the hot box that brings meals down is turned up too high and it fries the food, they can't read their own log books and I constantly get the wrong information, I do end up helping the staff because the queen in the office is always shorting the staff when she is off, and if I hear the staff tell one more resident to sit down I am going to scream at them. Everyone there has advanced dementia and you can't tell somebody with auditory input perception deficiencies anything and expect them to do it! And the right of refusal by a loved one with dementia... ... I told them the last time they said that to me "If my Mom had the cognitive ability to make those decisions she would not be locked in your facility!!!" I have not heard that one again Yep, we are cut out of the same cloth!!

Oops... you got me on my soap box! I so wish I had the retired Executive Director and my old Rem Coordinator back :::sigh::: But I will not give up until something is better. I can say that I finally did get the ornamental grass dug up. It only took from the first of June until last Friday to get that done but I didn't give up on it! I did a happy dance as they threw it on the trailer and hauled it off. One step at a time huh?

Even with our loved ones in a facility... it is up to us to be vigilant. We are their advocate because they can not speak for themselves. So stay on your soap box and keep the chair in the director's office warm

Love, deb

 
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