<p>Oldmom, he lives in a retirement community and he rents his home. We can sell when we are ready and put the funds towards his care, and mom and dad and the attorney have already figured out how to make that happen. All that needs to happen is we need to find the right facility.</p>
<p>HGFM, a few times you said you think Dad may be in denial or reluctant to talk about this. But if your parents have him to dinner almost daily, supervise meds as best they can, are looking at facilities and considering the “qualifiers,”, have an attorney, know how to sell the house- and are planning for their own elderly years and needs- they’re not ignoring it. I wouldn’t say denial. Many of us get stuck in a sort of purgatory as we make decisions about how to transition our relatives and sometimes the steps we make can seem small. It’s new for most of us here. </p>
<p>Also, when they seem to accept grandpa saying ‘everything is fine,’ for many of us it’s not the words themselves. We look for tone, any agitation, all sorts of cues, sometimes even that it is the same old answer. We do the same with our kids- ie, try to read them, not just their verbal answers. </p>
<p>I can understand not discussing everything with the kids. I think that varies by family, but sometimes, I need them to be a part, to meet their own needs (ie, know they helped, as you wish to.) Other times, frankly, I don’t want to burden them. Best wishes, you’re a good grandson.</p>
<p>Good point, LF. Also, although my own daughter is wonderfully supportive, sometimes she’s the last person I want to talk to about her grandparents. In other words, she’s a relief, a glimpse of life outside this crazy aging-parent world I live in. It’s good to spend a little time talking about her and her activities. </p>
<p>HGFM- not that this matters, but it sounds like auditory not visual hallucinations? </p>
<p>Unfortunately LB Dementia patients may not do well with antipsychotics as they are very sensitive to them. It is a rapidly growing diagnosis that was probably missed in the past and given a diagnosis of Alzheimers. In general, placement sooner than later can be easier, as increasing behavioral disturbances in some patients make placement more difficult in a location that the family wants. If the unit has had LB before, then they may be more likely to be open to accept. </p>
<p>Hang in there.</p>
<p>rockymtn–it’s kind of a mix. Sometimes he sees people, sometimes he hears them. Just depends on the day.</p>
<p>lookingforward, I’m hoping I’m a good granddaughter rather than grandson ;)</p>
<p>Here’s a short article (with a beautiful slide show) of the daily routine of a hospice nurse as she goes through the home visits to her patients.
<a href=“Before Night Falls - The New York Times”>http://www.nytimes.com/2014/06/29/nyregion/before-night-falls.html</a></p>
<p>rockymtn–too late to edit, but as of tonight he is now having tactile hallucinations as well.</p>
<p>Dad is playing phone tag with the neurologist trying to see what we can do to help him, whether it’s changing his meds or something else.</p>
<p>Thinking of everyone dealing with parents and grandparents. Hope we all can figure out how to handle and cope with the changes as they come.</p>
<p>I’ve been trying to process a couple of events that happened this weekend with my mom. </p>
<p>We took her back to her hometown for a visit. We stayed in a hotel (remember her house is full of hoarder stuff) and all was well the first day. The second day, we were all at breakfast together and she got up to go get more coffee (we thought), then momentarily we realized she hadn’t come back. We spent a long time searching the hotel for her. Turns out she went into the wrong room, was changing her incontinence clothing in the bathroom, then finally popped her head out the door to get some assistance - which was when I heard her voice and found her. She has dementia, but it seems mild most of the time, related to short-term memory issues. Before this, she had successfully found her room and even a room of relatives on a different floor. Housekeeping had many of the doors unlocked for cleaning, so she somehow went in a room 3 down from her own. When I told her she was in the wrong room she said, no I’m not, all my stuff is here. She was very agitated when found and was yelling at me and the housekeeping person. Then when I showed her the room was empty, she couldn’t figure out how she got in that room if it wasn’t hers.</p>
<p>Next up, we visited the house. I asked her to look for any clothing or shoes she might want. She went to her bedroom but instead of gathering clothes or shoes, she filled three bags with junk papers that were all over the room (it is still loaded knee-high with junk mail, coupons, sweepstakes, etc.) Then we left to go to lunch with relatives who drove a long way to visit with us. Mom got out of the car and then went and sat herself on the curb and refused to come in the restaurant. Various family members took turns trying to coax her in using various approaches, but none worked. She said she has opinions too and can make decisions too. It was about 90 degrees out. She finally came in after 90 minutes to use the bathroom.</p>
<p>I have felt since moving her in with us that it was a rash decision that is now very difficult to undo. I feel like I can’t take care of her if she won’t listen to me. Has anyone had to move a parent out of their own home and into an apartment or AL? She would rather be back in her house but she can’t. It’s very far away, out in the country, she has no license or car, was told she cannot live alone by her doctors, yet is making life difficult for us. I can’t see any solution that will be acceptable to all. She will refuse to pay for other living arrangements and will try to force me to keep her, even though she is mean to me and unappreciative of anything I’ve done for her, including spending many weekends working on clearing out her hoarding mess of a house.</p>
<p>Thanks for letting me vent. If anyone will understand, you guys will.</p>
<p>Psychmomma - I’m so sorry to hear of this. One thing I keep reminding myself and others, your life counts too. Just because someone wants something doesn’t mean it’s the best situation for them. </p>
<p>I’d suggest you start looking for places on your own first to see if it’s a fit for your mom. Then perhaps give her a choice of two. There are also options for respite care that we nearly did. She can stay at one of these places for 3 weeks, you can tell her your going away and she can’t stay alone if you need to. Hopefully once she’s there she may see she can just stay and be okay. Apparently that is a big way to transition people in.</p>
<p>I had to move my mother out of her apartment into AL. I knew living with me and my family was not a viable option. I told my mother that the doctors said she couldn’t live in her apartment anymore, and took her around to see several AL places so she could have input into which one she moved to. For a long time after she moved, she told me that I ruined her life and that she could’ve handled staying in her apartment. I learned to ignore her complaints, as best I could (that took awhile), because I knew that I had made the right decision.</p>
<p>Sorry you are having to go through this. </p>
<p>psychmomma- sorry about this big challenge. These kind of events are your road map forward. There seems to be emotional turmoil and confusion for your mother as she navigates “new” situations and finds herself adrift or humiliated. Perhaps the most important thing is being clear about your limits. Supervised living situations can be a gift to all. They reduce the stress of cognitive decline, just like an environment that is accessible makes all the difference to someone in a wheelchair. There is routine, support, and remembering becomes far less important. </p>
<p>I say this knowing you are up against a lot of resistance. You can not be held hostage in your home, yet your mother may advocate for that. Agree that having options delineated in anticipation of gently walking her through this would be a good idea. Are her papers in order with PoAs and health care proxies named? If so, this can help with logistics. Hopefully, the right plan can be mutually agreed upon, but if she is not competent to make big decisions, there are options. </p>
<p>I have navigated care for a severely memory impaired parent with little executive function (but no profound confusion/disorientation) for a decade. I have never needed to use my PoA as a way to do an end run around his choices, as he has trusted me to act on his behalf. Big transitions were done with lots of gentle, highly redundant recitation of what was to happen and what he would like about it. It is a process that needs to be highly simplified for someone with these issues and one can make a case for minimizing the number of changes an elder is likely to experience. I wish you the best with all this. I can hardly put into words the gratitude I have for his care facility and its staff. He is happy there, has peers and structured activities, while living in the moment, with peace of mind for both of us. </p>
<p>HGFM- Thinking of you and your family. So glad that your family has each other and can pursue options. This illness is a moving target to address. I appreciate your posts and have learned a lot from your description of LBD.</p>
<p>Psychomomma, so sorry you’re having to go through this.</p>
<p>The story about your mom sitting outside the restaurant makes me think that she is feeling out of control, like she doesn’t have any choices. And of course, she is in many ways incapable, and so you have to make choices for her. But, as you would with a toddler, it might help to give her as many choices as possible where she can make choices. “Mom, Betsy and Bill are coming for lunch. Should we go to Susie’s Kitchen or the Chinese Garden?” (Then again, with her memory limitations, that’s not always going to help. “Why are we going to the Chinese Garden?” “Mom, you picked the Chinese Garden.”)</p>
<p>I agree with travelnut that if you don’t have Power of Attorney already, now is the time to get it.</p>
<p>I’m not surprised that your mother got confused at the hotel. The last couple of times my mom was at a hotel with me and other family members, she couldn’t remember her room number, and she got confused about our plans for each day. Staying in a hotel produces cognitive demands on short-term memory that people with dementia can’t meet. My sister wrapped something around her room doorknob, so Mom could recognize it, to help her when she wanted to return to her room. And we ended up babysitting her a lot.</p>
<p>Thanks for the comments. I should not have been surprised with the mistaken room at the hotel- which is why I had been staying with her the whole trip, everywhere we went. I was surprised (and probably shouldn’t have been) by her agitation, yelling and disregard for keeping herself private when having clothing issues in the wrong room. (poor housekeeping staff.) At home, we have been able to make do with our arrangement. There is definitely comfort in routine for her. Since she’s been at our house for a year, she has developed a routine for herself that traveling messes up. She also said she wanted to come with me to help clean out her house. I can’t do that - she lived there alone for many, many years and it got progressively worse and worse. She can’t discriminate between an old box of jello from 1989 (thrown out by relatives this weekend) and a bank statement. Everything is important to her. I’m sure the refusal to go in the restaurant was retaliation for not being allowed to live in her house any longer, something she was reminded of by visiting there. </p>
<p>I do feel like the main problem is not getting a break. My sister can’t help (has ALS) and she would be the first to offer if she could. The other siblings live far away and close by but never offer any help. The respite idea is interesting. I’m just beginning to realize that looking into the options is something I’ll need to do soon. I am worried about her finances and how people pay for these places. If mom is like her mom, she could live another 15 or more years. </p>
<p>I’ve had POA for medical and financial things for 17 years and have never needed to use them. Not sure she would sign if they were being updated now.</p>
<p>Psycho, if you do put your mom in respite care at a facility, I suggest making sure she stays long enough to get used to it-- weeks, I’d guess, rather than days. When you tell your mom you are going on vacation, no need to mention that some of the “vacation” will be spent at home, vacationing from caregiving for her.</p>
<p>HGFM - my mom had constant hallucinations. She had Parkinsons. At first she knew she was hallucinating and would describe them to others - for instance it was raining roses one day. She saw kids playing in the street (the street was empty). She asked my brother who the nice gentleman sitting next to him was (no one was there). But eventually she wasn’t aware they were hallucinations any more. </p>
<p>My father-in-law is now suffering from Alzheimers and no one has confirmed this so it is my own speculation but when we visit with him he often wants to touch us, almost to make sure we are really there. I am guessing that he also has hallucinations. </p>
<p>You have to think of it as the brain is dying or malfunctioning so it’s no surprise that would happen. I wouldn’t try to explain to grandpa that he is hallucinating, just let him be. If he says you are sitting on X, just move. </p>
<p>I wouldn’t worry about grandma either (from other thread), she may be appreciative that you are making an effort to be involved in her life and she wants to also be involved in yours (by giving you gifts). </p>
<p>Yes, my mom was having a hard time on our trip finding her room. It would have been good to put something on the doorknob. We hadn’t thought it would be a problem, but it was. </p>
<p>Adult day care has been VERY helpful for many of my loved ones in getting some safe respite care. Two friends also hired someone to come and sleep over two nites per week, so they don’t have to worry about the SR prowling around at nite. It is definitely tough for everyone. </p>
<p>Psychmomma, my grandfather lived with my mom for about two weeks before he became like your mom. My mom, the nicest person ever could not say “no” to her father (my grandfather). I flew from OK to LA to help mom get grandpa’s house in order- remove everything and prep it to rent so the rent would pay for the “nursing home”. The day I arrived at the airport, mom told me that Grandpa was going to move back home alone(he was 95 years old)- he didn’t need anyone’s help!! </p>
<p>He wouldn’t stay at mom’s house and even if he did; he was wearing her out- I expected her to get admitted to the hospital due to stress. I came home, told Grandpa he had two choices- live with mom and a caregiver or move to a family type nursing home or else I would call Adult Protective Services (APS) on him and the state would take all of his money.</p>
<p>That was the only thing that worked. Would APS have done this? Probably not. But it was the incentive we needed to get him into the type of care environment he needed. He later told me that we put him in jail. That hurt, but there are worse things to happen when our (grand) parents get older. We have to do what is best for us AND them.</p>
<p>Luckily mom had already found 3 places he might like and we took him to each one. We picked the one that would let him eat cereal at 3 am followed by a can of Coke. He had very different eating habits!</p>
<p>I would recommend doing the best you can- if that means placing your mom in a home, then that’s what you should do. You won’t be doing your mom any favors if you end up in worse shape than her.</p>
<p>Sending you many hugs of support.</p>
<p>^ I just want to say that, yes, sometimes we have to be firm. Sometimes we focus on “life and death” issues for our older relatives and forget the same for ourselves. </p>
<p>My mother had a fall, not bad, not even sore, but the apt neighbor couldn’t help her up and called rescue. Fortunately, my mother was at her front door. If it were elsewhere in her apt, no one would have known. The fall scared her enough that she is now revisiting the idea to move to Tucson (alone) and willing to look at local AL or IL.</p>
<p>She can’t afford the costs for a super nice AL/IL here, but I’m hoping we’ll get a chance to learn what she can compromise on and what not. She had had the idea she would just move her two-bedroom apt’s worth of treasures, plus all the crap to AZ, “I can sort at my leisure, there.” Uh-huh. I am trying to convince her to pare down, for affordability. Someday, I hope to have a nice tale to post of a successful move. </p>
<p>You will, LF.</p>
<p>LF, when I again addressed moving to an assisted living, my mother thought she could bring her whole 2 bedroom house of belongings with her. Just does not get it.</p>