Return to the Care Givers Forum | Post a Follow-Up

 o
Mom with dementia upset about move

Posted by netty_73 (My Page) on
Mon, Aug 9, 10 at 18:24

Hi everyone,

My 83 year old mother was diagnosed with Alzheimer's-type dementia in early 2009. Since then the disease has progressed, but she still knows who everyone is. She has very very little short-term memory. My dad passed away in April, and it became apparent that Mom could no longer live in the small rural town where she had spent the last 57 years of her married life. There are no services--not a bar, a grocery store, a hair dresser--nothing. She never remembered to take her medication--never even remembered she was ON medication. I talked to Mom about moving and she eventually thought it was a good idea. Over the month or so as we waited to move her into a retirement community in the city where me and my 4 siblings all live (about 50 miles from her home), I would remind her of the move every single day. We moved Mom on July 26, and immediately she claimed we never told her she was moving. Ever since, she has asked me (not any of my siblings, just me) to go home. She gets very argumentative and of course, I can't use logic with her. One day, she called me at work 18 times to tell me she wanted to go home. I try using persuasion, telling her she's seeing me and my siblings every day now, that we get to spend more time together, that I was worried about how I would help her during the winter months if the roads got bad. Nothing helps. She still calls me every day, wanting to go home and saying she doesnt' need to be in the retirement community. But when she was at home, she would call me very upset about being alone there. It's like I can't win. I'm about ready to take away my phone number and just call her twice a day to check in. I just can't take the phone calls much longer. I have a fairly high-stress job and a new marriage (I'm the youngest and was born when my parents were in their 40s). Does anyone have any suggestions to offer?


Follow-Up Postings:

 o
RE: Mom with dementia upset about move

Netty, you're not alone. This is not an unusual situation at all. It's very, very common. First of all, you can't even be sure what "home" is to her right now. It could be the home in the small town she just left. It could be her childhood home. It could be an idea pieced together from movies, books, magazines, TV shows, and her own jumbled memories.

The desire to go home is very strong in the elderly who have moved -- whether it's a move into their child's house or a move into a facility of some kind (nursing home,convalescent hospital, assisted living, etc.)

You will never be able to make your mother understand what has happened and why it has happened. I went through this with my mother, and I know many others from this forum have gone through it too. I think the best thing you can do is just accept that this strong desire on her part is beyond your ability to control. This is one thing you can't really fix.

But you can deflect it. Whenever she brings it up, change the conversation. Tell a joke, talk about something you saw on TV, tell her about grandkids or neighbors, talk about the weather, sing her a song. Anything to get her mind off of "home" for a few minutes. If she can't be redirected, then cut the visit or conversation short. "Remember" an appointment, give her a big hug & kiss and leave. Or tell her you love her and just hang up the phone. Your idea of removing your phone number isn't a bad one. And cut down your phone calls to her. Is there a reason for twice a day calls? Do you suspect that the staff is not taking good care of her? If you have confidence in their care, there's no reason for all the check ups.

Remember, that none of these ideas are cruel or unloving. There's nothing loving about letting you mother continue in her anxiety over wanting to go home.

Have you talked to the staff? Does she seem to be content when you're not around. Does she participate in any activities? Is the staff friendly to her? Sometimes the elderly loved one is maintaining just fine until they see their child, Then suddenly all the negatives & tears come out. That's one reason why I suggested cutting down on the phone calls. Give her a chance to develop a life at her new place.


 o
RE: Mom with dementia upset about move

Shambo, I think you've made some great points. When I've asked the staff at the retirement community to check on her after a particularly emotional phone conversation, they always say she seems fine and has a smile on her face. I think she does "put on" a lot for me, because she knows I'm sympathetic and she sees me as being in control. There's really no reason for twice a day calls, except that she complains of being "left all alone" (she was far more alone in her house than she is now), and that pulls on my heartstrings. She says we've put her in "jail." But she only says those things to me, not really to anyone else. I think she hesitates to leave her apartment at the retirement community because she's afraid of not finding her way back, even though she has done just fine when I visit and we walk around the facility to visit the parakeet in the commons area or go get ice cream from the dining room. Maybe this is just something that's going to have to improve with time. When we do go out and walk around, there are always lovely elderly ladies who say, "Hi, Ruth!" to my mom, so I know she's not completely isolated.

I think I just need to get a grip. It's only been a couple of weeks, and Shambo, you're right--I need to let her settle in. I've visited her 14 out of the last 15 days--some days more than once, because I only live a mile away. It's just hard because when I tried to tell her that she gets to see me so much more often now, she says, "Oh right, you just stop in and leave right away." (Which is totally not true). I need to realize that it is the disease talking, not my mom. I did take the phone number away last night when she wasn't looking, and while I still feel a little guilty, I know had to do it for my own sanity.


 o
RE: Mom with dementia upset about move

How does she get access to a phone? Block her calls if you can, if she asks why she can't call you tell your phone is not working. If she calls you at work tell her your employer blocks personal calls. I don't advocate lying but sometimes you have to, to put their mind at ease. My husband had Alzheimer's, I took care of him until I started having health problems.


 o
RE: Mom with dementia upset about move

Vala, my mom has a phone in her room with a direct line. She has Alzheimer's but because she's physically healthy, the retirement home felt she'd do OK in their Independent Living apartments for at least a while. She still gets companionship, meals, activities, emergency response, etc. but she doesn't yet need help with bathing or dressing, for instance. I've debated whether she should really be in the Assisted Living area of the retirement community instead so that she has more supervision and guidance from the nurses. We're just kind of playing it by ear for now, since the Assisted Living costs about $800 more per month and is far less homelike than her Independent Living apartment.


 o
RE: Mom with dementia upset about move

Netty, my mom moved into an assisted living apartment about five years ago. Eventually, her dementia got bad enough for her to be transferred to the memory care wing. Before that move I spent hours trying to "fix" all her problems.

For example, she didn't like the food, so I bought her all kinds of condiments to take down to the dining room. I spoke with the kitchen staff and head chef many times about the food. For example, she wanted mustard on her sandwiches and claimed she couldn't get any. The kitchen staff said all she had to do was ask for it. She wanted orange juice at breakfast and they gave her cranberry juice. Again, all she had to do was ask. Everyone could get whatever they wanted. One of her tablemates got a small bowl filled with chopped red onion at every meal. But my mom refused to believe anyone would listen to her, so she refused to ask. Others would have a basket of special no-salt spice blends and hot sauces on their dining room table, but my mom refused to bring the condiments I bought especially for her. She preferred to complain.

I also spent countless hours trying to take care of her hair problem. She didn't like the on-site hairdresser. I ended up taking her to three different beauty shops before she finally found one she liked. So every week, I had to travel over 40 minutes to pick her up and take her off-site to get her hair done. Then I waited to drive her back. At least four hours each hair day. But she was oblivious to the trouble her refusal to use the on-site haridresser was causing.

These were just a few examples of me trying to make my mom happy. My point is that no matter what I did, it wasn't enough. By the time she moved into memory care, I realized that all my fussing had accomplished very little. All I had done was to wear myself out and neglect my husband. I finally learned to set limits. Of course, I was always on the alert to make sure she got proper care. But when she complained about something, I no longer dropped everything and rushed around trying to fix the problem.

I know how hard it is to deal with this kind of situation. It's not easy because you're a loving person. You hate seeing your mother distressed and anxious and your natural inclination is to do anything you can to ease her mind. The real difficulty is that, for the most part, it's simply not possible for you to undo the ravages of time and disease.

Good luck and feel free to return to this forum whenever you need some encouragement. Most of us have gone through similar circumstances.


 o
RE: Mom with dementia upset about move

Shambo, thanks so much--I totally get where you are coming from. My mom's not quite that demanding, but she is unhappy and lonely, and I guess I'm starting to realize that I can't fix that. I can only do what I can do. Her disease is what's isolating her, not anything I've done. It's ironic, my mom used to say she'd move to the city where I live in a heartbeat, but my dad would never leave his hometown. Now, she's here and all she wants is to go home. And I know, deep down, that if I found a way for her to move back home and have companions with her almost round the clock, she'd still be unhappy because her life has changed so drastically in a relatively short time. There's not much I can do except make sure she's well taken care of at this point and not putting herself in any danger. I actually "took the night off" last night and just called her instead of stopping over. She was just fine. Maybe I'm finally making it past my guilt after all!


 o
RE: Mom with dementia upset about move

Netty it's hasn't been a month yet, so give your Mom a bit more time to adjust..

Unfortunately you're the Mom now & she's the child.. So like a child change the subject, block the at work calls, get your siblings more involved with visits.

Cut back on the phone calls & visits.. I used to show up about 1/2 hr before meal time.. Time for a quick visit & whoops you have to go for lunch or dinner now Mom.. Love you & walk her down to the dining room & leave..

Remind yourself she's being taken care of & in good hands.. You have a long road ahead so post often & look after yourself..

Try not to let her push the guilt buttons too much..

(( Hugs )) Been there done this twice..

Kathy


 o
RE: Mom with dementia upset about move

Thanks, Kathy. I really appreciate everyone's advice and encouragement. Since Mom has been begging me to go home, I've found myself really questioning whether I should have let her stay in her home at least a little longer by trying to hire more caregivers (not easy in her tiny little town, but not 100% impossible). But, she's here now, and I know that to take her home would mean a huge struggle to get her to move again when she DOES get to the point where she may wander or hurt herself--and who knows when that will be? What if it happened this coming January and she wandered out into the countryside and we couldn't find her? I guess I know there's too much at risk to allow her to have her way anymore.

I did remove my phone number from where it had been written on a piece of paper sitting with a phone on a table right next to her recliner. I think that any time she started to miss home, she would see my name and that phone number and just obsessively call. I stopped over last night, and interestingly, she had all her stuff "packed" up--no boxes, mind you, but pretty much ALL her things were in the living room. She'd cleaned out all the kitchen drawers and put everything in a dish pan, folded up all the picture frames and put them in a pile. More or less, you could see she'd been preparing to leave. She didn't mention it to me once during my visit, and I didn't ask her why all her stuff was in the living room. I knew that would only start her back up again. Made me glad she hadn't had my number during the day yesterday--pretty sure that would have been one of those "18 calls in 6 hours" days!! I guess she will probably just cycle this way for the foreseeable future--but I pray that time will help. As I get more used to this situation, I know I will be less stressed over it. It's only been 4 months since my dad passed away, and we're all still coming to terms with it.


 o
RE: Mom with dementia upset about move

Oh dear! It is so hard to deal with an ALZ loved one. My Mom and I put my Dad in a memory care assisted living place in May and one of the attendants told us as we left that first day, "Leave your guilt at the door." How true, how true. The best advice ever!
Many days my Dad has his stuff piled up on the bed ready to move out. At first it really upset us, but now we are used to it, and just accept it as part of the disease.
He no longer knows how or what a phone is and some days doesn't recognize me, but that is just the way things are now.
The most important thing to remember is that you must take care of YOU! Don't let yourself get run down, you will be of no use to your Mom if you are!
Hugs, Kathy G in MI


 o
RE: Mom with dementia upset about move

Netty, I think that what they want when they talk about "home" is that feeling of being secure in familiar surroundings. It may be a childhood home, or the one where they were the happiest. It's doubtful that after a while they would even feel "at home" in their old home.

Some caregivers will find that after a few months, they become comfortable enough that they don't want to leave even for a few hours. It's that feeling of lack of familiar surroundings. Don't go so often, give her time to get more used to the place. She may never be happy, but she's at the best place for everyone in the family.

You must look at the big picture of what is best for everyone in the family. If she were in control of her thoughts, she would probably be horrified at her behavior. Take care of yourself.


 o
RE: Mom with dementia upset about move

Thanks Kathy and Agnes--I'm so glad to hear Mom's not the only one who has done the "pack and unpack" thing (last night, all her things were put away again). She's still very confused but I do see improvement. She recognizes her apartment from the outside (it's near the front entrance and has a patio), remembers to take her key with her when she leaves and has been doing better about going to the activities that interest her. I still hate to think of her sitting in her apartment watching TV alone so much, but I know she'd have been doing a lot of that at her own house as well. I know she misses puttering around her house, and she used to be a chronic cleaner (now they clean her unit for her). But she's not the same person as she used to be in many ways, so as long as she is at ease and comfortable, it's not such a big deal that she can't have a garden. Heck, it's August now, it'll be winter soon, and I think then she will REALLY appreciate having all the services she needs plus church under one warm roof. I'm going to try to skip visiting today--it's hard when I only live a mile away--but I know she will be fine.

Thanks again--it helps so much to hear that others have gone through this, and it gives me a chance to organize my thoughts!


 o
RE: Mom with dementia upset about move

Just a thought. We went through something similar with my mom. Finally my brother and I brought her back to see her house not knowing how or if we could get her out again. But once she looked around and saw everything was fine she was ready to leave. We were lucky she never asked again to go back.


 o
RE: Mom with dementia upset about move

I think it's often the case that one child gets the brunt of the workload and the stress. At some point, you feel like being a family-caregiver is much more like being a caregiver, and less like all the good parts of family. This story was on-point:

Here is a link that might be useful: Dealing with moving to assisted living


 o
RE: Mom with dementia upset about move

Wow...I could write my name with about every one of you! I am going through the same thing with my Mom. I am the youngest and only girl of 4 brothers. Of course, I am in charge. This year has been a year of TOTAL change. Laid off after 26 years, Mom in nursing home due to dementia, daughter getting married....
I am dealing with the same feelings of guilt. And having to back away, as I am working out of state - 5 hours away - for a new job.
I have a new dilema. My Aunt just passed away. The last time there was a death in the family, my Mom slipped even more. I am going to talk with the councilor at the home about how to handle this. Should I not tell her...tell her with the councelor present....

Oh, sorry - I did not mean to hijack your thread netty. It's just that it did hit my heart, as I am going throug the same thing.

Hugs to you all!

MonaRae


 o
RE: Mom with dementia upset about move

I'd suggest not telling your mother about the death, particularly if she hasn't been actively talking/asking about her sister(?). My grandmother isn't yet progressed to being in a care facility, but we decided not to tell her when her bro-in-law died last year, the last of her "siblings." She had not been asking about him for a year or so, which is like several years from her point-of-view in the dementia scenario. On occasions when Elmer was mentioned to her, she couldn't remember where he was (in a nursing home for the past 6 years), which town (about 2 hrs away), and was sure she had never been there (which of course she had numerous times) even after I showed pictures to her of a Thanksgiving dinner with him.


 o
RE: Mom with dementia upset about move

I agree about not telling your mom--she won't be able to digest the information anyway, most likely. I am starting to understand that caregiving for someone with dementia gets to the point where it's more about keeping down their agitation and trying to help them maintain an even keel. Giving them something upsetting to deal with only makes things worse.

MonaRae, I'm so sorry about the position you're in. I at least have 2 sisters who help somewhat when they can. It is just the way things go in most of these situations, unfortunately--one person ends up doing most of the work.

Just an update. This past week, we experienced quite a setback with my mom. The retirement facility called to tell me she was complaining of numbness in her arm and that she seemed to have lost balance and wasn't walking normally. I took her to the ER, but they couldn't find any reason for these symptoms after running numerous tests. I have a followup appointment with a local doctor for her tomorrow. She was fine when we left the ER, but she started to complain again later and got very agitated. It's been up and down all week. On Friday, they called to say Mom was complaining of numbness again and that maybe I should call and try calm her down (this was at 6 a.m.) I called Mom but she got mad when I reminded her of the ER visit and said, "I'll just sit here and die then" and hung up on me. I drove over there and calmed her down by making her breakfast, turning on the morning news, and helping her wash her hair. She finally said she was OK, but as I was leaving, she grabbed both sides of my face in her hands and said, "When you have time, you take me home so I'm not in your way anymore, OK?" I said she was not in my way at all, but she kept insisting. Not wanting to agitate her all over again, I said, "Ok. Well, gotta go--I will call you later." I called 3 hours later, and she told me "I have all my stuff ready to go home!" My stomach sunk. Of course, she can't even remember I was there, but the going home part, she remembers. I'm taking her to the doctor tomorrow and I'm hoping some anti-anxiety medication might help us. I think her constant agitation about being somewhere strange has contributed to this mini-stroke or whatever she just experienced. I still wonder if I did the right thing by moving her.


 o
RE: Mom with dementia upset about move

Talk top the staff at her home. You might be better off taking a full (gulp!) month off from her entirely. Just tell her that you have to be out of town. And don't even call her. Seriously. All the nice things you do for her only feed her anxiety and her sense of having power over you.

Really, you need to try something like that.

I understand completely. It's never easy. But take care of yourself.

Did you read the Gail Sheehey article that I linked to? The one that was in Newsweek? Please do, it might help.


 o
RE: Mom with dementia upset about move

Sushipup--thanks for the advice. I did speak with the staff at the retirement home, and they said to ask about the anti-anxiety medication. One of the administrators has a mother with dementia, and she said it has helped them tremendously. I'm not wanting to medicate Mom up, but her agitation is not doing her or anyone else any good at this point, so I think it's worth exploring. She's just constantly cycling and fretting, and I think that probably contributed to her physical problems last week.

I took the weekend "off" and didn't visit Mom on Saturday or Sunday (we were out of town on a planned vacation.) It's amazing how much even just two days helped. I think since she lost my dad back in April, she has substituted me in his place. Does that make sense? She always relied heavily on him, and now that he's gone, I'm her rock. She never acts this way around my sisters or brothers, probably because I was around for her and my dad for years, as I am the youngest. My sisters have made this observation, and I think they're right. I think I probably DO need to cut back on my visits/calls to her because otherwise she will never try to get used to her new surroundings. Why bother when she can see me and harass me about it every day? I think just seeing me gets her started on the "going home" bandwagon sometimes. The only thing is, I hate to think of her wondering where I am and why she hasn't seen me in so long. But then I think, "She doesn't remember that you were even there just a short time after you visit, so does it really matter if you're there every day or every other day or whatever?"


 o
RE: Mom with dementia upset about move

... but as I was leaving, she grabbed both sides of my face in her hands and said, "When you have time, you take me home so I'm not in your way anymore, OK?" I said she was not in my way at all, but she kept insisting.
I get that often from the grandmother. Since she IS home, the spiel is "I should be in the grave, out of ya'lls way." It may be accompanied by tears or anger depending on whether she's upset about something or frustrated, and sometimes threats of "jumping the lake" or taking the car and driving into a river or off a bridge. She hasn't driven in years so it's an idle threat on that front, although I did take the car keys (which brought up a separate point of trouble until she got them back) during a particularly intense incident couple years ago.

Regards to not remembering you've visited, it's astonishing how the memory loss can manifest both on short-term and long-term processes. Granny called this evening, about 5 hrs after the caregiver had left. Idle chit-chat. I asked who'd you talk to today? "Nobody." Oh, I'm sure you did. Belinda was there today, didn't you talk to her? "Belinda was not here today!" (slight scoffing tone). Which of course she had been.

She'll insist she hasn't been to a hairdresser in years (goes every couple months), doesn't have a doctor (when I may have taken her for an appt last week), hasn't been to a restaurant in years (when my sisters came and we took her out four days prior).

You're exactly right about avoiding upset by *not* trying to push them to "remember" that you were there, that she did go to the hairdresser or to a restaurant, that she does have a doctor (because how else could you get your pills?), but it's very hard not to do that. There's also the problem when accusations are batted-about of not providing attention, not visiting, not caring ... you almost *have* to remind them that, yes, we did all those things, even if it causes upset. It's a sticky, difficult situation to manage.


 o
RE: Mom with dementia upset about move

Ativan ( used as needed for anxiety ) will keep your Mom nice & mellow.. The last nursing home used to give to my MIL. She used to work herself into such a state even I couldn't calm her down & I saw her almost daily..

She should function quite fine just be a mellow happy camper..

Ask your Dr about it.. BTW have you power of attorney & all the legal stuff in place? A DNR ( Do Not Resuscitate ) as well with the retirement place & hospital/Dr?? Make sure you & your siblings are all on the same page with this one..

Not to sound cruel but if something should happen to your Mom at her age how far do you want to prolong her quality of life?? This is a discussion you should have with your siblings..

Hang in there!!


 o
RE: Mom with dementia upset about move

Wow, this is me. Everyday is an adventure. We do have health care proxy, POA, and DNR.

I am so stressed. I take care of everything

My MIL is in a memory care unit as well. I am the one who sees her almost everyday. Usually 6 days a week are ok. The nurse will call once a week. Something has upset her.
It takes me 1/2 to coax her out of bed. Its usually something simple and I can get her back on track.

It is amazing to me on how someones mind can do the things it does. It is a living hell. I can only hope that when I get older there is a cure or I pass suddenly in my sleep

I am so glad I am not the only one out there
Thanks for chatting


 o
RE: Mom with dementia upset about move

I do have POA for financial matters and health care along with advanced directives (a DNR.) Got that done within a month of Dad's passing. It's been one heck of a year.

Mom's doctor is wary of giving her any type of anti-anxiety medication since she's in Independent Living and not in Assisted Living at the retirement community. In his opinion, people on that type of medication need to be closely monitored. He did put her on a blood pressure medication, and he says her high BP could have caused the ER room visit last week and her meltdown on Friday. I guess all I can do is wait and see at this point. She did seem much better yesterday. It's such an up-and-down life with her now; you just never know what to expect. In addition to her care issues, I am scared to death of running out of money, even though I know I would probably just have to move her to a Medicaid facility at that point. We haven't done any gifting of her assets, so we should be in the clear when that day comes. I guess I need to just deal with this one day at a time.


 o
RE: Mom with dementia upset about move

Just checking up.. How are things going for you?


 o
RE: Mom with dementia upset about move

Hi there...things are going OK. Some days are better than others, you know how it goes! Mom hasn't asked me about going home for a couple of weeks. Some days I go there and I can tell she's just bored and lost; other days, she seems much happier. One thing that's been difficult recently is getting my aunt (Mom's sister) to understand she can't take everything Mom says as the gospel truth. My aunt lives in Oregon, thousands of miles from us. She calls my mom every day, and I just don't think she understands how much her sister has changed. She called me yesterday and said that Mom was crying and saying no one had called or visited in ages. (Of course not true.) My aunt is in her late 70s herself, so it's kind of hard to get her to understand this whole situation. I can't email her or send her links to information about dealing with people with Alzheimer's.

Anyway, that's not all that important. I guess the main point here is that we're making it, day by day. My husband and I just got back from a much needed 6 day vacation, and Mom did fine while we were gone. I called a couple of times. When we got home this evening, I called and Mom said immediately, "You're back!" I couldn't believe she remembered! She was in great spirits. I caught a nasty cold while we were away, and she was back in fine Mom form, giving me advice on what to take to get better. I told her I'd planned on coming to visit this evening, but with my cold, I didn't know if that was a good idea, and she said, "Oh no, you just stay home and rest." It's been a long time since she was OK with me not coming to see her even if it was for a good reason. A good day.


 o
RE: Mom with dementia upset about move

I am just learning about all of this, but netty if you go back to this forum (and I think you are a wonderful daughter), can you explain to me what you meant by "we haven't done any gift of assets, so we may be in the clear when that day comes" (something like that...)

Do you mean that if she gave all of you (out of her savings) money gifts and THEN you had to move her to a nursing home, you would have to give that money back? Hopefully you will see this thread, thanks.

Carrie


 o
RE: Mom with dementia upset about move

Carrie, there's a "look-back" period where you can't distribute assets as gifts, or 'spend down' in order to qualify for Medicaid. I am not sure what the time limit is, but it's at least 3 years, I think. (But don't count on my poor memory on the subject! It's at leats that long, perhaps longer)

Is that what you are talking about?

And it's fine to start a new thread, too. ;-)


 o
RE: Mom with dementia upset about move

Hi Carrie,

Sushipup is right, that's what I was talking about. Sometimes people try to get property or cash out of their aged loved one's name in order to 1) keep those assets from being used to pay for care and 2) to help their loved one qualify for Medicaid faster. In my state, a person cannot have their health care covered by Medicaid unless they have less than $2,000 in assets (not including their vehicle or home). I can definitely understand not wanting to spend these assets on care, as they virtually get eaten up overnight, as expensive as care facilities are. However, if you do try to "hide" those assets, Medicaid looks back for 5 years to see if that's happened, and if it has, they penalize you, and your loved one can't receive benefits. If those assets have since been spent on other things, it can be disastrous, because then how do you pay for care? We're just trying to play it safe with my mom and spend her money on her. After all, it's her money, and she and Dad worked so hard and did without for many years in order to save it up. Not that there's that much, mind you--but what's there is hers and hers alone.


 o
RE: Mom with dementia upset about move

Netty and everyone else... thanks for helping me out - I am still a bit confused... Here's my question (if you can help, that would be wonderful)

If Mom is 82, in Florida and lives in her own home... Can she gift $13,000 to each child (five) (which I understand is the most you can gift per child), but then if for some reason she goes into a home let's say within 3 years, do the children have to give that "gift" back or is it "allowable" - That's where I am confused.

I read "allowable" and so I am thinking that - say if she gave $20,000 each - yes, then $7,000 would have to be given back - but is the $13,000 for each child to keep? Even if she were to get into a home the following year?

Thanks

Also, if she is 83 and in Florida - wait five years? seven years? and then whatever she's given if she didn't have to go to the home, we could keep? I am a bit confused.

Thanks - Carrie


 o
RE: Mom with dementia upset about move

You had best consult an expert in Florida, and don't leave important tax-consequential questions to unknown people on the internet. Seriously.

She could have a stroke tomorrow and be incapacitated, and where would you be?

Get serious answers to your questions, please!


 o
RE: Forgot to mention...

Forgot to mention that while I am not in the same state - hours away - I did set up an appointment for them to see a lawyer that will be able to answer all of these questions.

Their will has to be updated (I noticed since I am executor) that it hadn't been done in 20 years and had accumulated more assets since then.

I am only sorry that they didn't understand that all of the money they have been saving, will go to the home - they thought they were leaving it all to us. It goes to show you that knowledge certainly is power - and they didn't have a clue. They are very disappointed.

I told them "Spend your money! Do whatever you want, don't worry about us! Enjoy life" Hopefully, the lawyer will explain what they should do with their money - and they are allowing me to call to be present at the meeting - even though I am in another state.

Too bad I wasn't on top of things sooner; I feel really stupid that I didn't understand anything about medicaid, etc.

Carrie


 o
RE: Mom with dementia upset about move

Carrie, not everyone has to go into a nursing home. My parents died at 93 and 95, and except for the 6 weeks rehab that Mother was in a convalescent home after surgery and several months of added help in her own apartment, both of which were either largely paid or didn't break the bank, neither had long lingering debilitating illnesses that required heavy expenses.

So not every situation is the same, Just make sure that your parents are seeing an attorney who specializes in Medicaid planning as well as estates and wills. Don't see a generalist who does a little of everything in law.

Good luck. Now's the time for you to pay close attention to these matters, when you can actually make plans instead of just reacting to what happens down the road.


 o
RE: Mom with dementia upset about move

Thanks so much for your help - I will check today to see if this lawyer understands Medicaid - I am sure he does - he visits onxe a week the over 55 community where they live and is pretty much the sole lawyer that everyone (mainly elderly) use.

I am most concerned with the fact that her wealthy brother is making her heir to his estate - with me as inheriting when she is gone... we need to ask about that too.

This is so uncomfortable - talking about money/death - I don't like it. I love them too much to talk about it but it's reality and it has to be discussed.

Thanks again


 o
RE: Mom with dementia upset about move

In my years as Care-giver, by trade, I have seen a lot of families go through the guilt, the "packing/unpacking stage", the self guilt, the "Take me home" stage, the self guilt, the "I should be dead" stage, the self guilt, the "you don't come to see me" stage, the self guilt.... ten years ago I had to turn my profession inward on my own family. I had to talk and keep talking to my mother about all these just being the illness talking, they would have never treated her like that if they knew what they were saying.

I've also noticed, and now it's a subject-in-common at Mama's "Ladies' Bible Study" group, that the primary Care-giver, who is easiest bullied with the emotional guilt-club is the one that gets dumped-on the most. My Daddy didn't have Alzheimers, but even he tried to keep Mama doing things for him so she would have to stay right in his sight. The more family-patients keep their caregivers busy the more they control them. like a spoiled child.

The last few days Daddy was alive, Mama realized that he was more calm and easier to work with when she wasn't available. That is typical of all family-patients. Now my my Grandmother is in the hospital and Mama is acknowledging that grandma is calmer and takes her meds better, when she's not there. This is soooo typical of Every family-patient/caregiver relationship I have ever worked around.

Psychology has a whole division that specializes in dealing with the way people transfer their feelings/expectations/dependencies to the next person when a spouse/family member/major player is no longer in their life. Even in as little as six weeks the patient begins to transfer focus. So that is all part of typical family-patients dynamics. You can verify that with a collage psychology instructor, so don't feel alone or crazy if you feel this way, just acknowledge it and redirect to the person who should now fill that roll. "...well have you told your nurse you're hurting?" "...have you told the coordinator you don't like their beef stew?" That will help you not to panic and feel more responsible to fix all of the things that is someone else's professional position in your mother's life.

I never knew about this web site until today, but these seem to be good people who are going through the same situations as you, and they have a heart to help you. Reach out when you can, vent when you need to, seek guidance when you have a question, and they will understand and offer good direction.

Peaceful journey to you.


 o
RE: Mom with dementia upset about move

Blitzyblond, thanks so much for the input, I really appreciate it. You definitely know the guilt side of this whole situation. I think Mom transferred her dependence on Dad to me within just a week or two of his passing. It's hard now because she is in the Independent Living portion of the retirement community where she lives (consensus was that she didn't have enough health issues for the Assisted Living side and that with all 5 of us kids in town, we could be around to help her). The reality is that out of 5 kids, 3 of us visit Mom. I visit at least 4 times a week, my oldest sister comes 1-2 times a week, and my middle sister comes when she "feels like it" by her own admission. I'm the one that the retirement home calls when they're concerned about Mom. Right now, she's really emotional, which of course is part of her dementia progression. I was over to visit her yesterday and she was teary about "being all alone" and no matter how much you try to talk to her about how there are a hundred other people living under the same roof, it doesn't matter. Of course she is missing Dad...which is understandable. I just feel so guilty because I can't be there for her the way she wants me to be. In her ideal world, when he died, I'd have moved in with her in her house in the small town where I was raised. But that's not an option...I have a high-responsibility job, a husband and a house of my own. I just hate seeing her so upset.. and when I'm not there, I worry about her just sitting and crying all the time. The retirement home wants me to ask her doctor about medications for anxiety, which I have, and he doesn't think she needs them. I feel like I'm stuck between a rock and a hard place much of the time.


 o
RE: Mom with dementia upset about move

Netty: In our county not every Dr.'s office has anyone that visits the NH/LTCF, nor does every NH/LTCF allow every office to have a Dr. in their facility, some Drs are too hard to work with. SO, go to the AL facility you would like to have DM in and find out which Dr/office they would recommend. Ask several CNA's and Nurses which ones they would recommend and which ones are easier for them to work with. If DM's is not on that list, switch. (Tell DM the new Dr. is a specialist.) Then you will have a Dr. that is more in-tune to the needs of DM's medical/PSYCHOLOGICAL Projected State. Even the staff at the current facility might suggest a Dr. that would be more attentive, but they're not allowed to say anything by law. Ask their "...personal opinion..." without the administration around (evening hours) and see what they suggest.

The new Dr. may also help get her into the chosen facility. If you've ever seen a two-year-old cry alligator tears and then suddenly be laughing, most likely because they got their way, then you know the type of resilience Dementia/Alzheimer pts have when you're not around. You beat yourself up far more then you would let a stranger beat you.

See if the current facility has a place you can sneak in to during a meal that you may spy on her without her knowledge. Make sure the staff knows ahead of time, or without fail one will blow your cover. Then you will see her interacting. Or have one of the other siblings spy.

If she was thinking as her old self she would be fine with you all carrying on with your lives and your families. Don't let the disease beat you until you have nothing but stressed memories left, because guilt and stress will eventually taint all the memories of the later "good years". Let your memories of her good years guide you on how to live your own life now. Make efforts, and every little effort counts, to defer DM to the professionals around her. You will always have a hand in her care and be up on her every situation because that's the way we caregiver adult-children are, but that doesn't mean you have to try and replace God by fixing everything personally.

I have seen widows/widowers bawl with utter relief when a dearly loved spouses passed because they couldn't let any of the professionals or family take any MAJOR responsibility, trying to replace God and God-directed people. Then they kill them-self with guilt, because of the feeling of relief. All their memories of the last few good years were swallowed by the stress of the "Sick years". Please, Don't do this to you.

When it come down to it there is usually one or two siblings that shoulder the whole responsibility and keep the others posted. My DM is that one for DG-M. This really has an up-side, can you imagine an elephant designed/built by commity. :) It might end up looking like a Platypus. :)

IF YOU COULD MAKE HER "IDEAL WORLD" HAPPEN, THE ILLNESS WOULD STILL HAVE HER JUST AS UNHAPPY. And she would still have to mourn you Dad. The only difference would be, you would be a cognitive prisoner of her disease, with no professionals to defer to. and self-guilt would still beat you and steal your "good year" memories.

Most of the folks on this site can give you more personal advice and tips because they have been through it from your perspective. They are involved from their heart and helping someone else go through it (and not make the same mistakes) helps all to heal. Mine is more of an outsiders/distanced opinion.

Sometimes the answer to someone's pain comes to light when they share your story or their story with an understanding friend. And, you both might find a different answer to a different pain in the same exchange. this is a personal journey each one is on. l.marie


 o
RE: Mom with dementia upset about move

How are things going for you Netty?? Haven't heard from you in awhile..


 o
RE: Mom with dementia upset about move

Hi everyone...things are OK, I guess. Mom is now on a very low dose of Lexapro antidepressant to try and control the constant tearfulness she was experiencing. That seems to have helped with the tears, but she still gets herself worked up into a state from time to time. And it's always about wanting to go home. She'll call me and say, "This is ridiculous, I want to go home. I'm going bonkers here with nothing to do, etc. etc. etc." For some reason, I cannot seem to get a grip when she makes those calls. They always upset me to no end, and it's very, very hard for me to do what the Alzheimer's Association recommends--redirecting them to some other topic or just outright fibbing and telling the person that this is only temporary. I've tried telling Mom that the doctor says she needs to stay where she is and she says she doesn't believe it. She continues to tell me that if she was at home she'd have all kinds of things to do and that her friends would take her wherever she needed to go, and so on. It's all I can do not to agitate her further by explaining how wrong she is.

I think I am still dealing with personal guilt for moving her from her home, regardless of whether it was the right thing to do (which I know it was). Plain and simple, I'm going to need to figure out a way to come to terms with the fact that she's unhappy and probably will ask to go home until the minute she can no longer speak.

Mom was always a very busy person, always doing something, so it does make me feel guilty that she spends so much time watching TV or whatever. But she's remembering her busy life before getting this disease and before my dad died, not the way it was the 3 months she was home alone. She had pretty much stopped cooking, she can't read a simple calendar or even turn on the TV. She didn't know how to work the thermostat in the house where she'd lived for 35 years. She wouldn't open the windows in the summer when it was suffocatingly hot. She spent most of her time sitting in her chair with the radio on, because she couldn't figure out the TV. When I'd call, she cry to me about sitting there "staring at these 4 walls" which is what she says to me now about her apartment at the Assisted Living. She was actually begging me to move her at that time, if you can believe it! But of course, according to her, she'd be just as happy as a clam at home now. And all of this just plays on the guilty feelings I keep allowing myself to have. I know she's incapable of caring for herself, but she'll never see it that way, and I just need to "get over it," which is of course, easier said than done.

Thanks for asking about me...sorry if this was depressing for anyone. I think it's just hard because it weighs on me all the time.


 o
RE: Mom with dementia upset about move

Netty, don't beat yourself up. You feel guilty because you love your mother and if it were in your power, you'd happily turn the clock back to when she was stronger mentally & physically. But the catch is that you can't do this for her. So it upsets you. It's understandable.

My mom died almost a year ago, and I still find myself regretting some of the decisions I made regarding her care. But then I ask myself, "What would have been the alternatives?" She couldn't take care of herself. There were no perfect solutions.

Yes, you may just have to "steel" yourself every time you hear about being bored and wanting to go home and all the friends that would come to visit... Her comments may never change. But you know the truth even though she's beyond being able to comprehend it.

I know it's hard. That's because you truly do care about her well being. Go easy on yourself. You really are watching out for her best interests.


 o
RE: Mom with dementia upset about move

Agree with Shambo. Don't do guilt. You've done well and you're doing well. Make a mental adjustment that admits the goodness you've brought to this troublesome situation. It is what it is, and you've stepped up and handled it. Somebody you know could have done better? Where are they?


 o
RE: Mom with dementia upset about move

Thank you so much, Shambo and asolo, for the support. I know you're right. It's only been 7 months since my dad passed, and we're all still adjusting to this new way of life. I need to give myself and my mom some time. And asolo, you are right, none of my siblings was willing to help make any decisions about Mom's care, so I did the best I could. I've already heard the dreaded, "She doesn't remember when I've visited, so why should I go?" comment. What a crock of B.S....I should tell my brother I hope his kids don't say the same thing about him someday. But I know where that will get me. :) ANYWAY....all I can do is keep on, keepin' on. And hey, one bright side is if Mom and I do argue, she will forget about it and we can start over the next time I visit. And eventually, I will figure out how to let her comments roll off of me instead of antagonizing me.

Thanks again, it helps SO MUCH to hear from people who have gone through similar experiences.


 o
RE: Mom with dementia upset about move

netty - you sound like a wonderful daughter and have been doing the best to take care of her -

I've learned so much about what may happen in the future and how you can feel guilty, even if you have done the right thing....The time you spend with her you will hold dear forever - no matter what - you made that effort - what more can you do?

Thanks for being such an inspiration.

Carrie


 o
RE: Mom with dementia upset about move

Carrie, sorry I haven't had time to read all the helpful responses you are getting, so if I am repeating something someone has already said, I apologize. First off let me say I have worked in a nursing home for 30+ years so I have seen a lot. What your Mom is doing is so like what I've seen over and over. The one thing I can think of to tell you is--the resident almost always takes it out on the one they love the most. And try to remember how your Mom was before the confusion set in because THAT is your real Mom. I can tell you this, Alzheimer's patients do not like ANY change in their lives. It's confusing and scarey for them. Nothing is familiar and they just don't have the capability of sorting things out. They are confused and afraid. Take your time. She will settle down in time. Best of luck with this terrible disease. It is heartbreaking for everyone.


 o Post a Follow-Up

Please Note: Only registered members are able to post messages to this forum.

    If you are a member, please log in.

    If you aren't yet a member, join now!


Return to the Care Givers Forum

Information about Posting

  • You must be logged in to post a message. Once you are logged in, a posting window will appear at the bottom of the messages. If you are not a member, please register for an account.
  • Posting is a two-step process. Once you have composed your message, you will be taken to the preview page. You will then have a chance to review your post, make changes and upload photos.
  • After posting your message, you may need to refresh the forum page in order to see it.
  • Before posting copyrighted material, please read about Copyright and Fair Use.
  • We have a strict no-advertising policy!
  • If you would like to practice posting or uploading photos, please visit our Test forum.
  • If you need assistance, please Contact Us and we will be happy to help.


Learn more about in-text links on this page here