Parents caring for the parent support thread (Part 1)

Parents Forum Parent Cafe
1141

<p>Hi to all my fellow caretakers! All this conversation of hospice reminds me that I haven’t checked in since my father was released from the hospital (after his possible stroke) on Easter Sunday. We realized once we got him home that his condition had really deteriorated and we needed some outside advice. The hospital sent over one of their social workers to talk about our options. Our biggest fear was that he’d have another crisis and we’d have to go through hospitalization all over again. As you remember, his primary care physician and his neurologist are practically worthless and we didn’t want to have to beg and plead for their attention any longer.</p>

<p>So…in a nutshell, the best option for dad is to be on hospice care at home. He’s in end-stage Parkinsons and there’s no chance he’ll improve. There won’t be any more frantic trips to the hospital. We already had 24 hour care (via long term care insurance), but now he has an aide come in Monday-Friday for 1 1/2 hours to clean him up. A hospice nurse comes twice a week to check him out. Best of all, they found us a new primary care doctor who specializes in hospice care and makes a house call every other week. We also can call the hospice people at any time. We’ve taken him off all unnecessary
medications. </p>

<p>Dad is fading, but he’s comfortable. He sleeps a lot. He can’t eat much solid food. We don’t think he is able to read any longer. (A month ago, he was reading 4 newspapers a day). His speech is often garbled. In his living will, he specified that he did not want to die in a hospital, so we feel we are honoring his wishes. Honestly, I’m surprised he’s still with us. Dad is a feisty, vicious competitor; I’m sure he’s hanging on until he’s convinced that he’s won the battle.</p>

1142

<p>workinprogress–you are a hero! Best to you as you take care of all your “seniors.”</p>

<p>My 90-year-old father called ME to check in, which is very unusual. He says he still has pneumonia/shortness of breath so they’re keeping him on antibiotics for another week, and has an appt. with his heart doc this week, as well as the pulmonologist if that is necessary. He seemed worried but still in good spirits. </p>

<p>I hope this is not the start of a “new normal” where he is so chronically out of breath he has to be seated all the time (think wheelchair.)</p>

1143

<p>Checking in…</p>

<p>Really appreciate reading the updates, so much collective wisdom on this thread. It’s interesting to read the thread from the first post and see how our dependent seniors have progressed with time. In my first post in August I optimistically thought mom just needed some more social activity, when it’s now clear that she is in the early stage of Alzheimer’s. She’s in limbo now, too ‘incompetent’ for an independent senior living facility but too ‘with it’ to be placed in a memory care facility. For now we’ll stick to the caregiver visits and hope she remains stable for awhile. She’ll be starting an Exelon patch (similar to Aricept) in a month, though I’ve read the drugs have very little effect. </p>

<p>I must admit I’m envious of those of you who have successfully launched your parent to an assisted living facility. We toured facilities but can’t yet justify a forced move. She talks about moving ‘some day’, but I suspect that day will never come voluntarily.</p>

1144

<p>I had a very interesting visit with my mother today. She’s 91yo and has been in a nursing home for 6 years. The entire time I was there all she talked aobut is dying. In the past, she’s asked about where she’ll be buried, told me what kind of casket she wants, etc. </p>

<p>Today was totally different. Today she told me that she’s dying tomorrow and that she’s looking forward to it. She has no immediate health issues and is not in pain. When I showed her that her favorite activity, bingo, was on Tuesday, she told me she would already be dead so it didn’t matter. She wondered what I would do with all my free time after she died. To her, living past 90 was an accomplishment and she’d have to make it to 100 to hit the next significant milestone. There was no shaking her from her conviction that she was dying tomorrow during the hour and a half I was there.</p>

<p>When I left, she said she’s see me tomorrow. When I asked what would happen if I didn’t come til Tuesday, she said she’d already be gone so I better come tomorrow. My mother has been manipulative in the past, but I didn’t feel like she was doing that. I better go see her tomorrow just in case she’s right. I don’t want to live with the guilt of not having visited her if she ends up dying.</p>

<p>Anyone else have this experience with someone who wasn’t terminal?</p>

1145

<p>Shell, my grandfather gave me my high school graduation present of $100 in 1980 because he was sure he would be dead before I graduated (1981). He passed away in 1998 at the age of 96. He was sure he would die at the same age as his brothers and sisters. He didn’t. But yes, you better visit your mom tomorrow just in case she wills herself to death. Stranger things have happened.</p>

1146

<p>Peace to all of you whose parents seem to be nearing the end of the journey. They’re blessed to have children who are making loving decisions for them.</p>

1147

<p>Recently someone posted a link to a catalog-unsubscription website, and for the life of me I can’t find it now. I don’t remember whether it was this thread or a different one, but it was in the context of elderly parents. Does anyone know where I can find it again? Thanks!</p>

1148

<p>Posts #1104 and forward on this thread. :)</p>

1149

<p>I had an in-law who was ill but not imminently so. We spent a very pleasant weekend with her and she mentioned that Monday would be an OK time to take a medication to help her, right? The oncologist who visited her at her home and is a family friend was startled because it was the first time she mentioned taking the medication that is useful for palliative care (morphine). He asked her if she was in pain or having trouble breathing, all of which she denied.
She got all her legal affairs in order and then on Monday, started having trouble breathing and asked the visiting nurse to get her the morphine and administer it, which the nurse did. She passed peacefully later that day, with two of her loving relatives at her side.</p>

<p>My SIL’s grandmother broke a toe and was in the hospital. She was otherwise in fine health. She was over 100 years old. She told all the relatives to come and visit if they could, so they all did. She announced that she was not leaving the hospital alive and refused all nutrition and hydration and died peacefully in her sleep about a day after the last relative visited.</p>

1150

<p>My mother hasn’t refused food or drink as far as I know. That would really concern me.</p>

<p>Her ‘decision’ to die was just made over the weekend. I saw her on Friday and she said nothing about this. My FIL seemed to lose his will to live, but his condition deteriorated over 5 weeks until he passed.</p>

<p>No calls from the nursing home yet. I’ll see her this afternoon. For all I know, she’ll have no recollection of what she was talking about yesterday. Having dementia is good that way.</p>

1151

<p>momsquad - sounds like my mom is at the same stage as yours. Took a broken hip to get her into assisted living. I don’t see how it could have happened otherwise. She should have at least been in independent living, but we used that time doing what we could to keep her in her own house. I wouldn’t wish a broken hip on your mom, but something like that will probably be what it takes. My mom is coming to the realization that assisted living is going to be long term. I know it makes her sad but she says they treat her like a princess. After rehab for her hip, we never took her home again even though her house is only about 10 minutes away from where she’s living now. That was the advice we got and it was hard and continues to be hard.</p>

1152

<p>Crisis averted for now. When I went to see my mother, her first question was, “When’s bingo?”. I guess things are back to normal. No mention from her of dying or being ready to die or who I need to invite to her funeral. </p>

<p>She spends alot of time by herself since she no longer participates in as many activities at the nursing home so maybe her death was just what she was perseverating on yesterday. She’s talked about funeral plans before, but yesterday was the first time she had the day she dies picked out and was so adamant about it.</p>

1153

<p>shellfell: Er, yay for dementia?</p>

<p>May she continue in good health, both physical and mental!</p>

1154

<p>My computer finally let me onto CC so I can see how Shellfell’s mother is today- glad it was a false alarm. I have known quite a few elderly people to pass away on their birthday or some other milestone, I do believe that we have some control over our final days. </p>

<p>My mom planned her trust with painstaking detail, she anticipated every eventuality upon her passing. However it was impossible to get her to discuss her wishes for assisted care. She firmly believed she would just “drop” as most of her relatives did. </p>

<p>Preironic, We’re pretty much resigned to the fact that it will take a precipitating event to get my mom to move. Hopefully it won’t be a broken hip, but something will have to tip the status quo.</p>

1155

<p>Saturday was the anniversary of my father’s death 34 years ago. My parents marriage wasn’t very good so I don’t know if that anniversary precipitated her “death wish”.</p>

<p>For as much as she’s focused on her death, like other people’s parents, she never wanted to consider her life if she became infirm. She would always say she’d either jump off the roof (she had lived in a 15 story building) or shoot herself (she never owned or even shot a gun). It took a precipitating event to get her into AL and another precipitating event to get her into a nursing home. It took years for her to forgive me for moving her into AL.</p>

1156

<p>shellfell, glad you went to visit and checked in so we could let our breath out. </p>

<p>It is tough either way. I did read “Dying in Slow Motion” which was very well written as anguish of trying to deal with a mother with Alzheimer’s. However, I didn’t like it because it didn’t really … FINISH. I want to get to the end of the ordeal and have the nice tidy bow on top. Guess it wasn’t fiction where she thought she could do that. </p>

<p>The judge signed the emergency guardianship papers today (supposedly). I haven’t seen them, but I guess I will get a copy in the mail sooner or later. Mom’s old neighbor is back in town from the winter in AZ and that is going to be big trouble as he tries to be helpful by giving her rides … NOT!!!</p>

1157

<p>oh eso-- you sure have your hands full. So sorry.</p>

1158

<p>DeniseC, thanks. The link I posted was for sweepstakes, but the one I was trying to find was for unsubscribing to catalogs (my mom’s weakness). I finally managed to find it, and in case anyone else would like it:</p>

<p><a href=“https://www.catalogchoice.org/add-address[/url]”>https://www.catalogchoice.org/add-address&lt;/a&gt;&lt;/p&gt;

1159

<p>It took a hospital stay for dehydration and a dx of dementia for my mom to move in with me - which happened 5 days ago. I guess enough doctors told her she could not live alone any longer - that she just sort of gave in. She was staying with my sister while we set up a room for her - and she was pretty nasty to my sister. She’s been fine since she got here, temperament-wise. She is soooo forgetful, constantly repeating things, and sooooo slow at doing any little thing. </p>

<p>She is coherent most of the time and wanted to write a couple of checks. So I sat with her for an excruciating hour and watched her basically play with her checkbook. She really loves to rewrite every little thing - the date, the check number, who it is to, what it is for… in the register… twice! Side by side. But it’s her money, and she wants to have control over this one little thing, so I will do my best to go along. </p>

<p>However, we have discussed that the sweepstakes entries are done, the book/magazine/doo-dad ordering are done, the donating to suspicious “charities” are done, unless we discuss them first and can agree they are a good idea. (Since she has herself subscribed to 11 magazines, I doubt we will be “needing” any more of those any time soon!)</p>

<p>The funniest thing - mom will be in her room with the door pulled almost closed, and I will think she is sleeping, but then out of the blue I will hear a very loud, hearty laugh! So far I’ve caught her watching Golden Girls and Abbot and Costello and laughing over and over. It’s pretty sweet to hear laughter like that. My house is normally very quiet with just me, H and S, a H.S. freshman.</p>

<p>OH, and I took someone’s advice from upthread and wrote to about 30 sweepstakes places to remove mom from their mailing lists. I’ll be curious to see how that works out.</p>

<p>I’m so glad Shell’s mom decided to not (or forgot to) pass away today. And Eso, I can’t believe the stuff you have gone through. </p>

<p>My mom also has said for years “I’m NEVER going in one of those places!” I can’t imagine how she thought she would avoid it. Maybe by moving in with me? lol. Clever girl, her.</p>

1160

<p>Try asking wherever mom received mail before NOT to forward junk mail, sweepstakes and catalogs.</p>