Clematis Posted June 5, 2016 Report Share Posted June 5, 2016 Going through my dad's stuff and reflecting on the ten years he spent out here in AZ with me after my mother died have changed my view of how he was actually functioning towards the end of his life. My sisters had spent more time with him than I had and were probably aware that he had already declined significantly-cognitively- by the time he moved out here. As I look back I think he was covering up a lot all the time he was here. People would tell me that I was in denial as to his actual ability to process things, but hey-both neurologists that he saw said that he did not have dementia. He could take me out to dinner and calculate a tip that was always very generous, scoring points with everyone, so what was the problem? He deferred to me about a lot of things, which was flattering that he valued my opinion. But I think he didn't really know what was in his house or how to do a lot of things. Maybe he overtipped deliberately-maybe not. Toward the beginning he would tell me about things he read or saw on TV and they were always scrambled. Then he didn't volunteer anything he saw or read, and I would quiz him, and he couldn't really say, but if I mentioned something he often found it familiar. I think honestly I looked the other way-without even realizing it. When he made decisions on his own they were not good ones. I think he really needed me from the start and I didn't even realize it-I just did whatever it took. From the get go, ten years ago, he was concerned that I would "put him in a nursing home". I thought this was bizarre, but I think now that if someone had carefully assessed him, any professional would have weighed in against him living at home alone. He had tons of hospital and ER visits all along and the staff always looked very relieved when I was there to cart him off. I think looking back that even ten years ago any of these hospital staff would have not been comfortable with him going home to be living alone. But since I appeared to be competent and very concerned, they said okey dokey and wheeled him out to my car. I always made a point of telling them that I was a social worker and lived a minute and a half from his front door. I honestly believed most of the ten years he was here that he was doing ok, but looking at it now, I think that he was only doing ok because I was here-the helicopter daughter, who just happened to be a social worker who had done home health with the elderly, and who also is very resourceful and full of energy and drive. Lena is a therapy cat and we visit residents in independent living, assisted care, and skilled nursing facilities. At this point I really cannot honestly say that even at the beginning he was in better shape than any of the people I have ever seen at any of those places. It seems likely that I was the glue all along, the only thing that kept him living at home, which was what he very much wanted. He never said so exactly, but I think he knew all along that I was the glue and so did my sisters, and every other person who worked with him or got to know him at all. I always used to say that sometimes he was the parent, sometimes, I was the parent, but mostly it was even-steven... But I don't think that was really true and I wonder how I could have really missed that all those years. All those people, all those years, telling me he belonged in assisted living and my thinking they were all crazy. Maybe I was crazy...and so was he-or just hopeful. Nevertheless, we made it work and for a long time...and now he is gone. I would rather he was here and alive in any condition than where he is. Link to comment Share on other sites More sharing options...
kayc Posted June 6, 2016 Report Share Posted June 6, 2016 Maybe your dad did have a little dementia going on, maybe it just wasn't advanced. My mom's got so bad there was no denying it! She'd get the bank and insurance company mixed up, she couldn't pay her bills (but didn't want us to), would let things lapse, she stopped taking her medicines, didn't know if it was morning or night, forgot to put on pants, thought she was getting married. Those are just a sample...it goes on and on. Today Facebook had a "memory" from two years ago...of my painting my mom's nails (something she never did during her life but she enjoyed it when she had dementia), she proudly showed them off. It feels like a million years ago... 1 Link to comment Share on other sites More sharing options...
Clematis Posted June 6, 2016 Author Report Share Posted June 6, 2016 Yeah, he did have a little dementia going on; he also had some other things going on like problems with attention and not really caring about a lot of things. I don't know. By the time he died, our beloved doctor finally said, "well, you know, your dad has moderate dementia". That was the first time anyone used that word in the same sentence as my dad's name, but it was clear something was awry. From what assessment did this conclusion of "moderate dementia" arise? Who knows! I am a school psychologist and I evaluate children and adolescents for schools to see why they are having trouble in school. It's not rocket science. You can test thousands of six-year-olds or sixteen-year-olds and norm a test--figure out what their ability is compared to others the same age with 90-95% certainty. You can do that only because at young ages, people's abilities are fairly consistent. It's not that hard to put in numbers how close they are to average, above or below. But an elderly person...there is so much variability. I have been trying to figure out how neurologists come to this conclusion, and I saw a neurologist whom I really respected evaluate my dad and pronounce him to have no dementia. I was intrigued and disturbed, because I think the bottom line is that it was meaningless. I have worked with people who had been declared incompetent and removed from their homes by their relatives-possibly for financial gain. And where was the data? I asked these questions and got answers like, "Well, just look at him/her!" I'm not sure there actually is any way to really assess an older person's cognitive ability other than a ballpark range, because there are so many variables. They can fake good or bad (cover stuff up or be obtuse for attention), they have good days and bad days, medications can have profound effects, and on and on and on. My father was a brilliant man with exceptional abilities in many areas. Three years before he moved here he was involved in day trading on the internet. I'm not sure if he was making money or not, but he sure had a lot of precise notes. But when he moved into this condo, he was not able to tell if the internet was working or not. How was that possible? I had no way to tell, but I do believe that he was struggling in some ways he didn't want me to know. I think that if he had stayed here on his own he would have been in serious trouble of different kinds all along. Especially early on, I didn't think I was doing that much for him. By the end, it was clear to everyone that he wasn't able to figure out a lot of things. But looking back I think I was the glue that held him together so that he could stay at home. It's kind of a weird thought... Had he been in assisted living, he would have had his food pulverized much earlier. He would have had more supervision and fewer falls and mishaps. Looking back, I realize that since he really was living at home alone and I was looking over his shoulder, so to speak, we were both out on a limb. His living alone was a total crapshoot. I think the only person who would have taken that gamble on him was me. I'm glad we did it. But all along I felt like I was in the dark trying to make decisions. And now, I feel like an archaeologist searching for clues to the past, except I was there and I am still equally in the dark. Link to comment Share on other sites More sharing options...
MartyT Posted June 6, 2016 Report Share Posted June 6, 2016 17 hours ago, Clematis said: Nevertheless, we made it work and for a long time...and now he is gone. I would rather he was here and alive in any condition than where he is. These two sentences say it all, dear Laura. Clearly you were your father's earthly angel. You loved him and you saw him through the lenses of that love. How wonderful is that?! He was blessed to have you in his life. ♥ 3 Link to comment Share on other sites More sharing options...
Clematis Posted June 6, 2016 Author Report Share Posted June 6, 2016 Thank you, Marty!I guess I just wished than as I wish now that I had understood more about what he was going through and struggling with. But I suppose the truth is that he told me what he wanted me to know...it wasn't from my lack of trying that I didn't know more. When he was alive I frequently was irritated and defensive when people told me he should be in assisted living. But neither of us wanted him there and we stayed on the "Home" route until the last possible second. I never quizzed him about his assets, life insurance and what to do when he died. I just focused on him and what would make him as healthy and happy as possible. Every day... Marty, do you know what scares and grieves me most about this summer? When all the work is done clearing out the junk at my place, and the carpet installed, my junky furniture jettisoned--well then all of his furniture & all the stuff (both of ours now) that is where I am now living will be moved over to my condo, which is an exact mirror image of mine. Then I will have to let go of his house, his home, and him, I think. Someone else will eventually be living here and he won't be here anymore. Ever... Link to comment Share on other sites More sharing options...
MartyT Posted June 6, 2016 Report Share Posted June 6, 2016 Just remember, dear Laura, that your dad is just as much with you now as he ever was ~ perhaps even more so, since he is always in your heart. So wherever you go, it will be his home too. The house, the furniture, whatever you do not bring is just "stuff" ~ you still have the most important gift he has given to you: You still have his love, and that did not die with your father. You will still have that, and all the precious memories you made together these last ten years, no matter where you live. You might appreciate reading some of the articles I've collected on this matter of saving stuff, all of which are listed at the base of one of my blog posts: Tips for Sorting A Loved One's Personal Belongings ♥ 3 Link to comment Share on other sites More sharing options...
kayc Posted June 7, 2016 Report Share Posted June 7, 2016 They did scans of my mom's brain, checked her cognitive ability, etc., it was quite extensive...they concluded she had stage 4 dementia and needed 24/7 lock down. When it had started none of us know for sure because she had mental problems, inappropriate responses, etc., that kept us from noticing dementia per se, but we were very aware that it had set in by the time she got a medical evaluation. She was afraid of losing control so she stopped seeing doctors, stopped some of her medicines, wouldn't accept our help, even though she clearly needed it. We had to take her to court to force the issue, which took a year. It was not fun, but necessary. By the time we finally had her in a dementia care center she withdrew and slept the first two weeks, then I told them to get her up and bring her out around people during the day, and that made a difference. I think she became less scared when someone else was taking care of her, even though she'd fought us tooth and nail on it. She'd accept from strangers what she never would us. To us we were always her kids, she should tell US what to do! I was very worried about her adjustment but she actually did real well there. I'm so glad you were able to take care of your dad and he accepted your help. It must have been very consoling to him to know you were there. We had to sell my mom's house of 59 years, the one her and my dad built, it was very hard letting go of it, but we needed it to pay for her dementia care which ran over $5,000/month for a tiny bedroom. I've found that a building, even with all it's memories, is just that, a building, but the person, they live on inside of you and nothing can take that away. 1 Link to comment Share on other sites More sharing options...
Clematis Posted June 7, 2016 Author Report Share Posted June 7, 2016 Thanks, Marty, I appreciate that-and the article. I can't imagine leaving his condo-it just seems heartbreakingly impossible. I know I will have to but it's hard to imagine. But my friends and I are working hard on cleaning up my condo and after it is cleared out I will get the blue carpet laid and then the plan is that I move in. His condo is a mirror image of mine and I am hoping that if I arrange the living/dining/great room just like his is now, it will feel familiar and like his house and mine together. Maybe then I will feel ok, because the main room will look like his did, except i mirror image and with blue carpet. It's funny-I have told people that I'm getting blue carpeting and they gasp in horror about the resale value. I am probably rolling my eyes and grimacing and about to cry all at once because they stop right away and say, "oh that's ok". I will have a whole collection of my mother's paintings, that really feature blue, and all my floral paintings...the blue carpeting will really pull it all together. Also, my dad's favorite leather armchair where he spent all his time was navy blue, and my maternal grandmother's persian rug is a blue based floral. And as if I needed any other reason, cats only see two colors-yellow (which means danger) and blue! If it weren't for Lena I might be practical and buy a wood laminate, but Lena would hate that. So why not buy carpeting in my cat's favorite color? At least I'm not painting the walls lime green and hot pink like my sister did...I miss my sister...this is her house, and you can see two of my mother's paintings. The green-walled one has a portrait of me-with the long dark hair-in the back right, and the pink-walled one has a portrait my mother did of my sister over the piano. See the blues that my mother loved? I have a bunch of her paintings that have this same blues scheme. Don't you think they'll look great with a muted dusty blue carpet? Well, maybe Lena and I will both feel better about it all with the blue carpeting... 1 Link to comment Share on other sites More sharing options...
kayc Posted June 7, 2016 Report Share Posted June 7, 2016 Wow, that is very pink! I say if you want blue, that's what you should get! People choosing something merely for resale value are not really living there, it's important to make a place yours and do what you want with it...if and when you ever do sell, they will probably replace the carpet with whatever they want anyway. I didn't know that about cats (yellow & blue) so glad I don't have yellow! 1 Link to comment Share on other sites More sharing options...
Clematis Posted June 8, 2016 Author Report Share Posted June 8, 2016 Kay, thank you for your posts about your mom and also about the colors...you are always so thoughtful and have really interesting things to say! Marty, this was a lovely post and I think you are right-the most important gift was his love, the memories, and his inspiration throughout my life. The article was also very good. I am really stumped by things I come across, however. He had SO much stuff! I had no idea. He told me he left all his tools for woodworking, upholstery, etc. behind and/or gave it away. But there some enormous boxes of tools and stuff that I don't even know what it is-stuff related to tools and fixing things. Some of it is very cool-like a micrometer and a pocket-sized set of tiny tools in a red pouch that snaps closed. I found the workings of a swiss jeweled watch in a tin about the size of four stacked quarters-what is that about?!? Some of these things I can't even begin to figure out what to do with and don't want to just jettison. I have gotten rid of a lot of his things- and some of it like his most of his clothing was easy, but an unreasonable amount of it seems precious-just because it was his. I can't believe my sisters both said, "I don't want any of his stuff" -aside from the banjo, of course. I don't have room for boxes of tools and stuff that I don't even know what it is. But I suppose I have really only begun to work on this project and it may take me some time. Perhaps the thing to do is to set aside the overwhelming boxes of stuff I can't even figure out where to start on, and proceed with the stuff that I can handle. It's really overwhelming... On June 6, 2016 at 2:36 PM, MartyT said: Just remember, dear Laura, that your dad is just as much with you now as he ever was ~ perhaps even more so, since he is always in your heart. So wherever you go, it will be his home too. The house, the furniture, whatever you do not bring is just "stuff" ~ you still have the most important gift he has given to you: You still have his love, and that did not die with your father. You will still have that, and all the precious memories you made together these last ten years, no matter where you live. You might appreciate reading some of the articles I've collected on this matter of saving stuff, all of which are listed at the base of one of my blog posts: Tips for Sorting A Loved One's Personal Belongings ♥ Link to comment Share on other sites More sharing options...
enna Posted June 8, 2016 Report Share Posted June 8, 2016 I'm still sorting (after four years) my husband, Jim's, things, Laura. And I do believe those who are no longer here on this earth are definitely in our hearts. Stuff is just stuff but so very hard to give it away. I like the paintings but not the lime green wall. Link to comment Share on other sites More sharing options...
Clematis Posted June 8, 2016 Author Report Share Posted June 8, 2016 1 hour ago, enna said: I'm still sorting (after four years) my husband, Jim's, things, Laura. And I do believe those who are no longer here on this earth are definitely in our hearts. Stuff is just stuff but so very hard to give it away. I like the paintings but not the lime green wall. Thanks, Anne! Four years...I have been at this for less than five months, and most of that time I was working and only had little bits of time. Now I've had almost three weeks off school, but I've been recovering from that car-related injury for those three weeks. It was just yesterday that I was taken "off restriction". I've been chomping at the bit to get going, although I have had some help and therefore some stuff has gotten done. It's really overwhelming. When my sisters were out here, one of them (the cold nasty one) said to me, "Look you have two condos that are less than 900 sq. ft. each-how long should it take to go through them?"891 sq. ft. each plus a garage on each of them that is pretty much packed. And the interior of each of them has way too much furniture and other stuff. It's a ton of stuff. The paintings you can see were all done by my mother except for the giant doll's face and that thing hanging off the left side of the pink wall. 1 Link to comment Share on other sites More sharing options...
kayc Posted June 8, 2016 Report Share Posted June 8, 2016 Laura, Have you thought about taking the stuff you do know what it is and want to keep and letting an estate place sell the rest? They are more versed in what stuff is and what it's worth and can land more for it even with their fees taken off. I had a friend that used it and she thought they did an amazing job in a short order. 1 Link to comment Share on other sites More sharing options...
Clematis Posted June 9, 2016 Author Report Share Posted June 9, 2016 That's a great idea, Kay! One of the people who is helping me with all the sorting and whatnot does estate sales. Right now we are sorting at both houses, but we could be sorting into Keep, Toss, Give to thrift, Sell and ??? categories. Whatever is left in the ??? boxes could go to the estate people. Maybe the Sell stuff as well... 1 Link to comment Share on other sites More sharing options...
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