<p>@3togo my thanks too for starting this thread. I find a lot of comfort in just venting and being heard. Plus there are GOOD suggestions here . </p>
<p>@eyemom, boundaries are good. Keep making and sticking to them! Hard to do, but really will be better in the long run.</p>
<p>@momsquad, your situation sounds familiar. Mom took about six months to settle and maybe 9 to start feeling really part of the place she is. Now she has moments of wanting to go “home”, but the definition of home is not clear. I thin the only down side of where she is is that she is not near any family.</p>
<p>@minnymom, I am sorry for your loss and very sorry for your H dealing with his sister (and of course, you by extension for the sympathy). For the estate sale, yes we did use one. It was INVALUABLE. It was hard in her small town to find one that worked, but there were two choices. We could not have done it ourselves without living in town for months. Plus it was a relief to have someone else make the decisions and do the pricing. They identified one very good print and priced it for $5000 and I would have been happy to get $5 for it. So that was worth it right there. It was/is still terribly sad that it is all gone as it mostly was our grandmother’s “stuff” that Mom just lived with, but it had to go and get done. </p>
<p>After about a year and a half, I think I have most of Mom’s life tidy-er. It isn’t all cleaned up yet, we are still fighting other bad renters and I would like to sell more property. It seems like every property has some disaster associated with it. Latest is trying to sell an office rental that the renter is not paying his lease (a lawyer who got his license suspended). She bought it from her evil ex-husband’s even more evil lawyer son. ALL the paperwork on it disappeared in the divorce. I know my mom would not have gotten rid of it because I found papers from my Grandad’s funeral which was in 1965. I think evil ex’s son took it because apparently the falsified the cost of what my mom paid for that building. NOW she will pay 20 times the capital gains. serves her right in a sense for being sneaky, but I am tired of cleaning up stuff like that. </p>
<p>But I didn’t reply because we were at DS’s college graduation! There is a brighter future ahead and you can believe H’s and my estate will be very very tidy!</p>
<p>@minnymom sorry for your loss and all your husband has to deal with. We used professionals for estate sales for my in-laws. For my parents, we just used Salvation Army to clear out most of their stuff. It should have been easy, but no one was there to help with the planning so kind of a big mess. </p>
<p>@3togo Yes, thank you for starting this thread. I certainly felt sandwiched at D’s graduation in MA for D’s this past weekend. It is important to my parents to attend graduation and this is the youngest and the last one. We flew (from NC) there, I brought them to the east coast to see his brother, and then drove to graduation in western MA. It did not go well. Most of the time, they had no idea where they were (they are both from and grew up in New England and I was surprised) or what was going on. So glad to have them back in their CCRC! Hopefully it won’t take long to get them back to their baseline before we left. </p>
<p>Some questions for this wonderful community:
How do you stop the inappropriate/sexist comments from my dad who has Alzheimers? It is bothering my D so much that she doesn’t want to see him. </p>
<p>My dad’s younger brother has Alzheimers. He is 3 years younger and about where my dad was about 1-2 years ago. My cousin who lives closest is aware. Should I give a heads up about the trajectory of the illness that I see in my dad? So sad. Both are graduate prepared engineers. My uncle is newly married and it doesn’t seem like his slightly younger and mentally alert wife is taking this seriously. </p>
<p>Should I try to have my mom who also has dementia. travel again to see her sister who does not have dementia?</p>
<p>GTalum. I would give “permission” for your D not to deal with her grandfather as he is now. It won’t matter to him and perhaps she could keep better memories of him if not forced to deal with this. I lived through my grandmother 's Alzheimers and she said AWFUL things for a while. It goes away, or did in her case. Some grandkids couldn’t handle it and the main thing … it didn’t help her to have them around anyway.
For the other notification, I think you have to know your audience. I tried to get my brother to acknowledge Mom’s worsening dementia a full year before it exploded beyond hiding it. He wasn’t ready to deal with it and there wasn’t a LOT that could have been done… although keeping the predatory handyman at more distance would have made life a LOT easier for me later. But if there are legal things like POA and trusts that your uncle can sign … now would be the time if they are not yet in place.</p>
<p>And for traveling with your mom and dementia? My mom loves to go and does well when traveling. She comes back exhausted though. (so do I!) My motto is a short life but a merry one at this point for her, so I’ve taken her to my niece’s wedding and out for Easter. I did not take her to DS’s graduation because that would have blighted the weekend for DH and DS. But normally I’d say go. Your aunt might have a strong opinion to offer, too. I’d ask her!</p>
<p>Sometimes the inappropriate sexist comments, or inappropriate racist comments, let you know far more than you wanted to know about your relative’s inner life. Maybe distraction is the way to go, the way you’d deal with a fractious toddler.</p>
<p>Him: Look at that girl, she…
You: How about those Yankees last night! Losing 10-2, did they just forget how to play baseball?</p>
<p>How do you stop your parent from making inappropriate comments? You don’t. They lose their filters, and start expressing their deep-down earliest beliefs. My parents were raised in the deep South in a time when it was perfectly acceptable to be racist, even expected. In the 60s and 70s they learned to mostly keep those ideas to themselves, but they never lost them. With dementia, and with increasingly not caring much what anyone thought of them, those lovely ideas started to come tumbling out. </p>
<p>My best strategy when I see that Mom is heading down the racist road is just to change the subject quickly (which is easy to do, since she can’t track a conversation anyway). And I know that the people around her, both black and white, don’t take it personally. Everyone knows she’s a very old lady who’s not really responsible for what she says.</p>
<p>Thanks everyone. I just wanted to be sure that there was really nothing I can do. The problem is that they are intermittent comments as opposed to rants. I did tell D that she didn’t need to be around him for a period of time. She is leaving on a journey shortly. Normally I would bring her to see folks, before she left. But, they can’t remember when she leaves so no harm done not bringing her by. </p>
<p>That may be the case. I have heard that sometimes dementia can bring an old person back to an earlier stage in his/her life along with the beliefs s/he had then. My stepmother only started calling out for her papa, calling her son by her brother’s name, etc. when she hit 92. So you never know.</p>
<p>My elder with Alz has had a complete change in personality. I’m not sure that racist, sexist, or swearing as an elder Alz means it comes from deep within. It doesn’t mean he/she has had these latent thoughts all these years. I think it just means their mind is malfunctioning and here’s another weird symptom. In the case of my elder, I am told he was swearing and shouting, but never witnessed it. But his personality has become very childlike and losing his verbal means we don’t have to hear him being sarcastic and mean like he used to be.</p>
<p>I also don’t force my daughter to see grandpa. She comes along willingly when she is home, and we talk to him about her, but I’m not sure he has any idea who she is or what we are talking about. It’s more something for us to say to him since he has nothing to say to us anymore being basically nonverbal at this point.</p>
<p>But his wife is becoming meaner and meaner as she gets older. She doesn’t have a dementia diagnosis (yet) but we can barely stand being in the same room with her. And my daughter has said she doesn’t want her at her upcoming wedding at all. Her nastiness is rubbing off on other family members too and they are treating us badly now because of whatever latest stories or complaints she has about us (husband I are only family nearby - all the rest are states away and yet manage to give us grief). </p>
<p>I don’t know what we’ll do with mil as she gets older and meaner and harder to get along with and we’re the only ones here. My sister in law says she will visit in February for their birthdays. I’m not sure the Alz elder will still be here in February. Of course last time she came was Thanksgiving for two days and it was a BIG deal. She’s still mad that we didn’t drop everything and worship the ground she walked on while she was here. So she gets to come out every 18 months or so and we’re supposed to, I don’t know what, when we are always here and all we get is grief. </p>
<p>I was at a support meeting last night, and one gal took care of her aunt and her mother, who both had dementia. For a while she had them at home with her. One day they went to Home Depot or Lowe’s to look for gardening plants. Aunt decided it was a good time to strip naked when niece was down the aisle - oops. That decided ‘field trips’ were out. Aunt has since died. Her mother has outlived 19 years of recurrent cancer (stage IV but still plugging along, and dementia for quite a while too) - has been in a nursing home since she got to be too much to handle at home.</p>
<p>Another gal has a husband with dementia who now has hospice. He normally weighed 180; he now weighs 98. She is having a difficult time with her feelings, because she just didn’t expect him to ‘leave her’ in this way (last 2 1/2 years).</p>
<p>Physical and psych/emotional limitations are so challenging.</p>
<p>This is such a great thread. Thanks for starting the thread @3togo.</p>
<p>Yikes, SOS. I guess I can count my blessings that Mom hasn’t ever decided to go Full Monty yet! </p>
<p>A woman in my Bible study group is caring for her husband with Alzheimers, and it is very hard on her. In addition to the logistical/medical/nursing burdens, she struggles a lot with feeling angry and betrayed. I suppose that’s something some of us will be dealing with in a few years, probably even more difficult than parents. :-(</p>
<p>Yes, the work I do has me meeting and getting to know many, many people who have varying degrees of poor health and chronic health conditions. It always breaks my heart when one of them dies, especially if it is someone who I have gotten to know over the years in our programs. I try to keep it in perspective and am glad they are no longer suffering but saying goodbye to so many very nice folks is hard. </p>
<p>I have a virtual friend in hospice whom I’ve been in touch with now for over a decade. The wife is paying $11,000 PER MONTH for his care and even though she and he agreed that he should go peacefully, the hospice nurses are insisting on catering to his every whim and feeding him nutritious food and doing what they can to PROLONG his life, even though he’s rarely lucid any more and pretty much consents to anything. It’s very tough for the wife and contrary to the Advanced Directives that hospice was given. She has already grieved but this is just prolonging the grief for her and him. He’s been in and out of hospital most of this year and his lungs are very barely functioning at all any more. The family feels that hospice is “milking” the family and system for all they can before they allow him to die.</p>
<p>I am trying to bond more with the healthcare workers than the patients because at least they don’t die (most of the time), compared with the many patients I’ve known who have died over the past decade and more.</p>
<p>Himom, that seems very odd for hospice, in fact, it seems contrary to their mission. Why is your friend paying out of pocket? Hospice is covered by insurance including Medicare. And ignoring the advance directive? Something is very wrong. They should tell the doctor what’s going on and ask for another referral. </p>
<p>The people are in WI and I am only hearing this through many filters. They have tried other hospices and it was a terrible situation. I really don’t know much and it isn’t my place to interfere. His bro and other loved ones are with him.</p>
<p>I suspect it’s just a matter of days but $11K/month is a shockingly high amount for hospice, especially for a patient in and out of consciousness. I feel bad for his wife, as her health is poor as well; this is just adding stress to a very tough situation. </p>
<p>Agree it seems unusual. My BFF, though, has done the same for her 99 y.o. mother, with dementia and unable to do much of anything. They have her in AL with, I think, 12 hours/day of private care brought in. The cost over the years has been enormous.
My thanks also to 3togo.</p>
<p>I believe my MIL is paying out of pocket for FIL’s care as well. He is in a private nursing home (6 beds); with 24-hour care. She said it is a stretch to pay for it although she hasn’t said how much she pays. </p>
<p>^^ That makes sense since Medicare only covers 100 days of skilled nursing per claim, and beyond that you become private pay. Himom was talking about hospice, which should be covered by insurance. </p>
<p>I’m sure. Without knowing all the facts, it sounds like your friends are being taken advantage of (I could be wrong if there are things we don’t know). But if they are, I hope there’s a special corner of hell reserved for people who take financial advantage of the sick and elderly, and add to the terrible burdens of their loved ones.</p>
<p>Medicare pays for the specific services provided by Hospice workers, but not for the nursing home costs of rooming, feeding, daily care. If you are in an expensive nursing home, you have to pay for being cared for in that facility.</p>
<p>It sounds like there may be some disconnect here in whether the nursing home is on board with supplying only palliative care here. I can’t argue with providing nutritious food, but there may be more going on here. It is hard for you to know from such a distance.</p>