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<p>This is from several months back (I’m catching up!), but the issue is eternal.</p>
<p>We used the word “co-pilot”. My parents seemed to like that. Then the co-pilot gradually took over everything and the pilots never noticed.</p>
<p>“Co-pilot” certainly sounds much “friendlier” than “taking over.” Indeed it is a sticky area. </p>
<p>H gradually took over the finances for his family, well before I came on the scene as he had a much better head for finances than his folks. They never had as much income as bills and as they got older it they were happy to have him take over.</p>
<p>Actually, some folks might actually welcome someone taking over the books, since that’s tedious. Perhaps if the folks are given regular amounts of cash that they can use as they will but no longer have checking accounts or credit cards or ability to take or make loans, that might be a good start.</p>
<p>Wow. I think I found my way here just by searching new posts. Am up in the middle of the night and really should get back to bed, but wanted to introduce myself. </p>
<p>Before July, 2012, I would not have even come here. Yes, I had elderly parents, but they were independent, essentially healthy, and not wanting help. While I was on a mission trip with my family the first week of July, Dad landed in the hospital from an episode of dehydration, overheating, weakness, and increased dementia. Little did I know that from the moment of that phone call I received on the way to Great Adventure for our mission groups “day off”, that my life would totally change. He was hospitalized for 6 days, then sent to rehab because he was so weak and confused. There he stayed for 5 weeks til Aug 12 (he enjoyed his last two weeks there with the London Olympics!). </p>
<p>He came home that day (a Sunday) to hopefully a new and better life, with Visiting nurses providing PT and OT. My out-of-town sister had come up a few times and worked on the money situation and cleaned up the stuff dad had gotten so way behind on that he just couldn’t start. We were just getting to the point at home where I was going to have to figure out if they could truly live alone, even though they both thought life was now going wonderfully. Dad had he strength to walk again and was willing to use his walker. Mom had her 70% hearing loss identified and had new hearing aides. I still had to manage everything with doctors, nurses, treatments, and meds. </p>
<p>Nine days later, on Tuesday Aug 21, shortly after I’d returned home from a rough morning with them, Mom calls and said she thinks dad’s had a stroke… And it began all over again, only this time much, much worse, as it was a left-side stroke and he became aphasic from it. No hemi-paresis, so we thought that was at least a good thing. </p>
<p>This time it was 7 days in hospital, and 6 weeks in rehab and it didn’t go nearly as well. At first he worked with his therapists, this time adding speech 5x/week. But along with his stroke came a personality change with anger and agitation. He can swear like there’s no tomorrow. THOSE words are perfectly clear. Mom is STILL having trouble not taking it personally. </p>
<p>So right now he is home and has had 24 hour live in care since October 12. They actually pay 1.5x, because mom needs care, too. That became evident in the months dad was not at home. Her forgetfulness became clinical and we got her to a neurologist, then a neuropsychologist for testing. She also has been diagnosed with dementia. The progressiveness is not known at this point. Mom loves her live-in, so that is great. And the woman is great with dad, too. Very quiet and patient and never gets upset at him. She is a much better woman than I am in that regard… </p>
<p>Dad has declined weekly and has been on hospice for a few weeks now. That in and of itself was a huge task. I was a blank slate when it came to my hospice knowledge, and the first case worker nurse we were assigned clashed personalities with my mom and me and it was horrible. The one we have now is fantastic!!</p>
<p>I read Mary 13’s story and it felt so familiar. I felt so sad for her. All it takes is one catalyst and everything spirals downward. My dad has a dnr, and even in his healthy life, it was always clear he wouldn’t want to be debilitated. He’s never wanted a funeral or even a memorial. He has always planned to be cremated. So right now, this strong, proud man who was a Cornell graduate at the top of his class and was an engineer for his career, is lying in a hospital bed in his house, not eating, not drinking, losing muscle tone by the second, and spending hours a day yelling, hallucinating, fighting, and asking to die. It’s so hard to see and I feel so bad for him. I feel the worst when he is more lucid and seems to understand his predicament. He completely stopped taking all his meds and now is just on ativan gel topically, and haldol rectally, both to control the agitation that gets so bad and violent that he can’t be physically cared for. </p>
<p>I will relate a bit more as time goes on, but for now I will mention that last week we took our 3 teenage sons to visit him. They hadn’t seen him since the stroke, mostly due to fear on my part and not being sure he’d want them to see him that way. After he stopped eating and drinking, it became clear that they HAD to see him. It was a brief, but wonderful visit. He was close to being his old self. He spoke (sort of - not all words recognizable) recognized the kids, even smiled at them and at my dogs, which he always loved. I want the boys to remember him in this more pleasant way…</p>
<p>Time to try to get some sleep. Meeting with hospice nurse tomorrow morning, then off to one last college visit with DS13 and DH before getting news from ED school Wed at 6pm. Also have DS14 who will receive PSAT score this week, and SAT score on the 20th. I don’t love change, and I’ve had enough change for 6 months… but it just won’t stop! Trying feebly to enjoy the Christmas season just a bit… Surprised mom with a tree tonight. She hasn’t had a tree in at least 15 years! She loved it and was very appreciative! (but the bottom row of lights on MY tree - brand NEW lights- just stopped working…) </p>
<p>Sorry so loooonnnngggg!!! It’s been a busy 6 months! I feel like the cold cuts in the sandwich of life, parents on one end, kids on the other (and stuck in the middle with my husband who was just laid off from 22 year long engineering job, but that’s a story for another day! I’m sure there’s probably a thread for it! :))</p>
<p>Echoing the sentiments of others–sympathy and hugs to worknprogress2. May your father’s memory be for a blessing.</p>
<p>RobD–tough skin? I thought the problem with the elderly was usually extremely thin skin. My father is always injuring himself by bumping into things, resulting in bruises and lacerations, sometimes requiring dressing. We discovered something slightly rough on his walker kept tearing the skin on his hands! VERY thin skin.</p>
<p>I know a disease called scleroderma (sp?) results in thickened skin, but I don’t know how “tough” it is.</p>
<p>my3gr8boyz–welcome and hang in there!</p>
<p>After caring for my dad for 7 years after my mom passed away, and then his estate/affairs after he passed away, for another year and 9 mos (still going on…) I have had difficulty reading this thread. My heart goes out to all of you. BTDT. My sympathies and cybersupport to you all. Deepest condolences, worknprogress2.</p>
<p>my3gr8boyz - welcome; this is the right place for you. we get it. sorry for the struggles.</p>
<p>worknprogress2 - my sympathies; after my dad died, I was blessed with memories of happier times before he was sick - I wish the same for you</p>
<p>worknprogress2: I’m so sorry for your loss. Even when you expect it, it’s still a punch in the gut. Thoughts & prayers to your family.</p>
<p>mygr8boyz: the juggling can get to be a bit much. I know exactly where you are. Last week, I was so worn out by mom’s new issues & DH’s job hunt that I ended up in bed by 7:45. I don’t think I’d ever been as mentally tired. DH being home has been a blessing on a few occasions these past 4 months, as he’s been able to do some of the medical visit transportation. Luckily he’ll start a new job soon, so it’ll be all back on me again, but I’m not complaining!</p>
<p>mommusic: my mom usually has tissue paper skin, which is why it really made me say huh?</p>
<p>To work, so sorry for your loss. Prayers for you and your family.</p>
<p>worknprogress, you have my deepest sympathies.</p>
<p>my3gr8boyz, the first several months after a major change with elderly parents are incredibly stressful. I had many sleepless nights too. Their issues don’t get easier as they age, but we learn more about resources, support, their health issues, this thread, so we don’t feel so alone in dealing with things. Welcome.</p>
<p>RobD, glad to hear the size of your mom’s triple a. I think you said she was already on statins, is her diabetes under control? Sounds like there is a lot of scar tissue that is interfering with the ability to draw blood. Depending upon the frequency that they need venous access, they may discuss with you the placement of different type of catheters. This can be pretty routine, so don’t be upset if that subject is broached with you. </p>
<p>My heart goes out to all of us dealing with the physical, emotional and financial health of our elderly loved ones. The toll it takes on you is sometimes not recognized. My husband, who quietly supports me through all of my attention to my mother, my aunt, and his mother, showed up at my aunt’s house to tell me that the day was over and I needed a break! That brought me crashing down and made me realize how much I and my family had been affected. I am trying to be a little nicer to myself and my family.</p>
<p>Worknprogress2, heart’s love to you. Be gentle with yourself over the next few months; it is a bumpy road even when you’re glad your loved one is out of pain. </p>
<p>My3gr8boyz hello and hugs to you.</p>
<p>Hugs to all and a bit o’ sweetness in the holidays. Please take a moment to pat yourselves on the back and recognize all you do!</p>
<p>xoxoxoxoxoxo</p>
<p>Worknprogress2- my sympathy to you. Take good care. </p>
<p>Thinking of all juggling concerns about their elders throughout the holiday season and into the new year.</p>
<p>my3gr8boyz, welcome to the thread. </p>
<p>The last part you wrote, about trying to enjoy Christmas, is really important. Caregiver burn-out is real, and it’s debilitating. I encourage you to carve out some time and some pleasantness for yourself and your family this season, and going forward. That’s your fuel, and you need it.</p>
<p>The other Christmas part, about getting your Mom a tree, is also important. It’s so easy to get caught up in the work and worry and stress of parenting our parents that sometimes we (well, I) forget to just stop and enjoy them occasionally. Watch for those moments; you’ll cherish them some day.</p>
<p>Thank you, everyone, for your kind words. Tomorrow one of my tasks is calling funeral homes… </p>
<p>Mom took a walk outside the house today to see the Christmas tree from the outside 
</p>
<p>I’m working on not having caregiver burnout - I wouldn’t have thought it was a real thing before…</p>
<p>RobD - Wow. Didn’t realize you are going through some of the same things I am. Hugs to you. Glad it was nice sometimes to have DH around, but what a tough time for him to have been out of work. </p>
<p>Again, thank you everyone for the warm welcomes.</p>
<p>EC: mom had a PICC line a few years ago. Guess we’ll see how things go and if we have to revisit that. Her sugar is under control and she is “on” statins, but she doesn’t take them the way she’s supposed to. As I said to her dr. last week, a bigger dose of the statins will just be a bigger dose that she doesn’t take ;)</p>
<p>She meets with the cardiologist tomorrow, so we’ll get more intel. I’m not anticipating any big revelations.</p>
<p>mygr83boyz-best to you as you navigate all this. It is so hard to see this decline. I have to say that taking care of details with the funeral home in advance can be a big help in knowing what to expect and how to proceed. Though you wrote that your father wishes this to keep this part quite “simple”, I think it be a comfort to have these logistics tended.</p>
<p>Also, it seems to me that when someone opts out of traditional services, some family and friends may still want to gather, express sympathies, and remember their loved one in a way that honors wishes as well as those who wish to connect at the time. Even if this were not the case, I would want my immediate family together as mutual support and an opportunity for my children share remembrances. I think many people have to address these issues today, for lots of reasons ranging from long life spans and geographical changes making it unlikely the deceased peers or extended family can attend or visit, to the possibility of not wanting to use a traditional funeral home or religious site. Highly personalized and small options exist and can serve a purpose. You are also having to think of your mother and what would work best for her. So much consider.</p>
<p>Welcome to this thread. I hope you find it as supportive and helpful as I have.</p>
<p>Nice nice thread.</p>
<p>RobD, we have found that prefilling a pillbox to be very useful. It provides a check on what meds are taken, when prescriptions have to be refilled. The one we use is a 4 x 7 matrix, it has a spot for 4 different times a day for the whole week.</p>
<p>So many helpful comments here. My condolences Worknprogress2, your post reminds me of how important each visit becomes as our parents age. You got your father outside for some fresh air and had lunch with him in his final week, he was truly fortunate to have you caring for him. </p>
<p>And welcome My3gr8boyz, thank you for the details of your parent’s situation. It helps me to mentally prepare as my mom will eventually transition from “forgetful” to something less benign. It hadn’t occurred to me to have her evaluated by a neuropsychologist, her doctor never mentioned the possibility. </p>
<p>These stories help me to be patient and kind to my mother, though she is plenty stubborn and ornery on most days. She called me for the third time last week to ask the address of one of my nieces. I’ve sent her the addresses so many times, but she can’t seem to keep track of her “notes”. I finally bought blank address labels at Staples and printed labels for everyone she might conceivably send a Christmas card to or write to in the next year. I was touched by how grateful she was to me for doing this. I was thinking of my own inconvenience at repeatedly supplying her with addresses without considering how frustrating it must be to lose touch with people simply because you can’t find their address. </p>
<p>I wonder if anyone else has simple tips like this that they have found helpful to their parent? </p>
<p>I guess until our children are grown with their own families we are in a transition where our holidays are more about happy memories than making new memories.</p>
<p>Wow, so many dealing with these most challenging situations. Good luck to all now, especially over the holiday season. Our folks will have their 60th anniversary in 2013. I sent out an email to my sibs asking them if they want to help us plan a celebration. So far, have not gotten much response, but expect we’ll be hosting something for them. Am glad that so far, they’re doing pretty well (but of course it can change at any time as this thread clearly illustrates). </p>
<p>Both folks are getting more forgetful and my dad gets pretty upset and angry if he can’t remember or explain where he wants me to drive. Fortunately, neither likes driving long distances to new places at night, so they’re happy to have us drive.</p>
<p>DeniseC - yes, pillboxes can be a good thing! However, unless we are actually there to “patrol” pills still get forgotten (It had not occurred to me that even keeping track of the day of the week was going to be a challenge. Tried the “page a day” calendars, but you miss one day, and forget that you’ve missed a day, and now EVERYTHING is off by a day! I also find mom being exactly a week off, especially when using the monthly calendar…)</p>
<p>Another thing I’ve been using for my mom is a simple spiral notebook with each day and date written in it. I write appointments, pill taking, PT visits, PT exercises, etc. I like to put little boxes next to things so she can check them off. She was never a list maker in her “previous” life, so it’s a skill that is still, and always will be, a work in progress! Our live-in aid does most of the details and reminders, so for now, that takes a huge weight off my shoulders.</p>
<p>Memories. Yes, a lot of memories. My dad had been a hobby photographer, we we always have lots of pics to look back on.</p>
<p>We will have a small gathering of very close family and friends and sprinkle some ashes in a local park where dad liked to walk the dog. (I think the ash sprinkling will need to be discrete!). This is probably even more than my dad would want, but he mentioned something like this to me in the week before the stroke, and mom likes the idea, too, so I think it will work.</p>
<p>I have the paper in front of me now to write numbers and start the calls… I’m stalling…</p>