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Post by Artista/CN on Jan 2, 2021 21:43:38 GMT
So crushing. Bro and aunt who's there till Wed went for a walk. Put pop in bed since he tips over sitting up. Says right leg is getting weaker. I mean there is no improvement and won't be even if he was much younger. My heart is shattered. He loves being active and out. If only we could rewind time and hit the stop button... 😫
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Post by Artista/CN on Jan 14, 2021 6:16:54 GMT
Bro is getting more exhausted, not surprisingly. He can't be away from pop without being stressed to hurry up with shopping, errands.. so thankfully the lady that found pop's 2 great caregivers that switch off tues thru fri has said she'll come on mon. If her nurse daughter works then it'll be half day as she watches her grandkids. If not, full day. This way bro can do everything without being on call leash. Pop didn't want more help as it's more money but it seems her sister had a chat with him last week when she was there for a week and he was in the shower. So I'm happy for that. He's coming on 3 years of helping pops and I can't imagine how he does it. It's physically, mentally and emotionally very demanding. I honestly wouldn't last long. He's a saint.
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Post by Artista/CN on Jan 21, 2021 7:02:14 GMT
What a great day. Finally a day with no hatred or toxicity. Here's to hope for better days.
It is my pops 82nd bday as well today. Find out he barely missed getting in his recliner and slid to the floor. Caregiver got him up but hurt her hand. Told bro time for marlon to warm him up to hoyer lift. Medicare pays for manual lift. He was hesitant since he'd become more depressed. I get that but he also doesn't want them or himself to get injured. I said what are we waiting for. Until someone gets hurt more? So I think they'll start presenting it. Just crushing. It was his birthday too. God give me strength to not take an emotional dive. Hanging in but sometimes barely.
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Post by Artista/CN on Jan 29, 2021 5:43:05 GMT
Stormy here. Fitting. Pops calls asking how he can end it all. Can't deal with disability anymore. Joined fb and a stroke forum. That's not what's causing his disability but no point. No treatments nor cure for pls. You say the right things, look at what you still have... but I get it. We all can fall into that slump. Crushing...
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Post by Artista/CN on Feb 28, 2021 1:41:59 GMT
Saw anna on Tuesday after months. She is allowed to go visit her mother again since she's in hospice. Went back Wednesday. Asked since mother sees me as her daughter if I can go see her too. Anna said mother mumbles alot but sometimes will say a sentence. One sentence she said out of the blue is Shonta is nice. She was blown. No fam name but me. So home said yes. Went on Thursday 1130 to 230. Mask and ppe. Fed her which takes a couple hours to get a decent amount in her. She says to me I know you, I like you...and takes my hand and kisses it saying thank you thank you. Shes in and out, mostly dozing. She'll be asleep then wake up suddenly talking away I think to things she's seeing, maybe spirits. In her own world. But today she said I was beautiful and held and kissed my hand. I was there 4 hours today. Hard to leave as she is like a baby wanting connection and love.
Since anna is 2 hours away and hard on her, I agreed to come every other day for 3 or 4 hours to do her lunch and be a companion. Only 1 is allowed in at a time so when she comes I don't go. Next, mon and wed. Friday she's coming till sun or mon then I'll resume every other day till she comes back next.
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Post by Artista/CN on Mar 4, 2021 5:31:18 GMT
So for now mother's home says I can go visit every wed. Mother knows me and anna wants me there for her mother.
Got there at 1130. Sound asleep. Lunch came shortly. Puree and oatmeal. Same thing as last thurs and sat but maybe different pures. It takes a good couple hours for her to eat half. Eats a bit, snoozes, talks gibberish. Once in awhile she's aware and will say I know you, I love you, grabs my hand and kisses it. I can't imagine what thoughts she has because she does come into reality from time to time. The fear, perhaps confusion why she's in the bed, not knowing what's wrong or going on. We'll never know since at this point there is no coherent conversation. Only a short sentence of the 4 she'll say.
They have her radio on a jesus channel. Not my thing but she is catholic. Sat for dinner feeding which came at 5. Slow go. Sat till 6:30 after getting half of soup and puree down. Back and neck started bothering me. Not used to that chair and bending, moving at bad angles to feed her and interact.
Tomorrow early is 1 hour mri on my pelvis as a follow up from last year's procedure. Hitting the hay early. Tiring day..
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Post by bier on Mar 18, 2021 20:59:36 GMT
👋
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Post by Artista/CN on Mar 19, 2021 1:47:58 GMT
Hey Bier! Looks like all's good with you on fb.
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Post by Artista/CN on Mar 19, 2021 2:06:47 GMT
7 medical appts this month, done. It's nothing for a long time then bam, follow ups one after another. 🙄
There was a covid case at a sister facility where everyone had been vaccinated and a pt still got it. So the corp has dialed back on visits even more. My once a week for 8 hours is now once a week for 1! WTF?? It takes 2 hours to feed her! Funny thing is that while masks are required, the long sleeved long hefty bad type of ppe that goes from your neck to your ankle is no longer required. It's getting better in the bay area and we're in the red tier now which means 25% capacity for businesses now that were previously closed. Anna's mother is end of life. Could go any time now. I enter from the outside directly into her room via a sliding glass door. So no contact with anyone there. Mental health is critical especially for the dying who are confused and scared. Yesterday she was mostly dialed in. Grabs my hand, kisses, says I love you, I know you, thank you. Yesterday was a little convo for first time. She said you have beautiful eyes. I said thank you, you do too. She responded I used too. I'm old now. I've never had any type of convo with her since she's been on hospice. So this was special. I told the manager that it's insane to restrict family even more in her condition. It's critical for family and pt. Anna who is coming next week is facing same rules. So manager to call corp office to see if exception for mother. I could do every day if it's a couple hours. The 8 hour day, no. Very exhausting. Max 3 x week for that. No energy for more..
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Post by Artista/CN on Mar 19, 2021 2:24:24 GMT
Things have changed for poor bro on the pops front. The niece/aunt duo who would take turns helping pops tues thru fri are gone. 12 hour days isn't as big deal as lifting pops, even though he's thin and average height. One had 3 jobs and has gone out due to exhaustion. The other got covid and decided pop too much on her.
So bro has been living there for a month now and counting. The sad truth is no one will work hard for your loved one as you do, no matter how much you pay. Bro works pops legs more than the caregivers which results in a little better moving around. PLS is progressive so pop will never get much better. But every little bit helps. So the plan is bro is going to clean out the garage. Once it's done then he'll start the search again. This time not for 4 days a week. Pops does much better mentally, emotionally and physically with bro. So 2 days a week, 12 hour days. If person is really good then 3. It's taxing on bro as he's in LA, pop in Irvine. So we'll see. It's rough for both of them. Thankfully the PT who has become a family friend is into zen, like my bro, and positively affects pops mood. Haven't heard I want to shoot myself in awhile now. Nothing like hearing a loved one wants to kill themselves. ☹
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Post by Artista/CN on Mar 25, 2021 4:12:06 GMT
March 20, first day of spring and Iranian new year. Makes sense. Life is renewed, what better date for new year! Nice warm weather, longer daylight, very refreshing!
Going to see Anna's mom tomorrow to feed her lunch. Will see if I can sneak 2 hours in instead of the lame 1 hour. Anna is coming from fri leaving mon afternoon so I'll probably not go see mother those days and gear up for daily the best I can to feed her lunch. Last appt of the month, of the 7, is results of my pelvic MRI. I already saw my chart and nothing alarming, just the mild cramps are probably from fibroids maybe coming back. As long as it's not bad I can deal. But if it gets like last year, then the same procedure again. Really don't want another major sx like hysterectomy. Everything is cumulative like anesthesia and that, chemo, current meds has my brain in a fog and a lot of fatigue/low energy. I've had sx every year full general anesthesia every year since 2015. Hoping this year will be 0..
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Post by Artista/CN on Apr 4, 2021 3:02:27 GMT
Dementia. Man such a horribly long disease. One day you think this is it. Hands are cold, barely awake, not engaged at all, doesn't want to eat... then next looking better engaged and limbs are warm, meaning good blood flow. As your body shuts down, blood flow is directed from the limbs to your organs so hence the cold extremities.
I am now able to visit Anna's mother every other day for an hour or two. I submitted my negative covid test. Manager says good for 2 weeks. Ugh. I'm not around anyone. Thankfully Walgreens by me gives test for free. Not all Walgreens or pharmacies are free test. So call first. CVS was going to be $139! 🙄
The days I go I go at 11:30 when her pureed lunch is served. I feed her, get her to drink water, and get her to down glucerna. It's a balancing act. She's usually sleepy with the meds she gets so I hold her arm, talk to her. Sometimes she's dialed in and answers appropriately and sometimes just jibberish. Today was jibberish. I got her to eat 80% of puree, downed 2 glucernas that she loves, and drank a glass of water.
You just never know what the next day will bring. And the day will come when that's it. So heartbreaking.
Anna's coming back mid month for a couple days or so.
Then I have my former boss who periodically texts me like we've been talking. She's stage 4 or 5 Alzheimer's. If she calls it's hours on the phone with her repeating the same story forgetting she told it 10 minutes ago. I go with it. I put it on speaker and let her talk. She got into guinea pigs from me when she was first diagnosed so we do have that to chat about. Another heartbreaking conversation but I bring her and mother comfort, which is rewarding to me.
On the pops side, nothing new. Bro has been 24/7 caregiver for a couple months now. No major rush to hire. One lady they thought would work out for a couple days a week starting wanting to change stuff, meaning quality of care would go down. She called bro superman. Yes he is but you're nowhere close so no go. God bless bro.... 🙏🏻🙏🏻
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Post by Artista/CN on Apr 14, 2021 19:59:59 GMT
Going every other day to see Anna's mother. This 1 hour max is bs as everyone and her are vaccinated. No way to feed her in an hour. Stay longer sneakily. She's hungry. Staff does 1 hour feeding. Not enough. She's very slow and needs 2 or even 3 hours for a meal.
Today I sit. Mother is in deep zzzzzzzz. Was up all last night talking. So didn't eat breakfast and 90 min in, no lunch. Can't wake her up. So I sit. Hospice coming later to see if can go off hospice. She has minor improvements in her look. Anna told them the reason why she's looking a bit better is because I take my time to feed her until she's full and get as much liquids as I can in her. That was sweet. But today is a bust. I'm trying to stay for hospice so I can ask questions. Gina the tough manager is here so I'm not even leaving the room for the bathroom. I feel like zzzzzzzzzz myself and there is a regular bed in here but I won't. Hopefully they keep her on hospice. To me the tiny physical appearance improvement is not a good reason to take her off.
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Post by Artista/CN on Apr 15, 2021 2:27:53 GMT
Finally after 2 hours of zzzzzzzz, she half woke up enough to slowly take food. Got her to finish puree 3 glucernas and milk so not bad. Anna called saying hospice coming 230ish to see if mother is okto go off hospice. So I stayed. Rn came and video visit with doc. Asked me when started helping with feedings every other day. Beginning of march. Coincidentally mother looks better since then, a tad more filled out and not so sunken in. Told him they give an hour for feedings. I sneak past the hour and stay until her mouth no longer opens for food and drink. It's never done in an hour. 2 hours Monday, last Saturday 3 hours. Staff tells anna eats 25 to 50% of food. Well because you sit for an hour. She sleeps between some bites. I sit there for as long as it takes. I go at her pace, not staff schedule yet yet manager rachet keeps saying county guidelines. So the most minimal chance I have covid like 1 in a zillion since I don't go anywhere, live alone and see no one, it's more important at that negligible chance than comfort for mother who obviously is hungry well past 1 hour. You are starving her because not enough staff for someone to sit beyond an hour. If she was my mom or dad I'd blast them and demand to speak to someone in corporate. Either let me do lunches till she's full or get a staff who has 2 hours to work it. If they wouldn't do it, I'd write the news station that does bs features. But it's Anna's mom and she's not into doing that. I have a fuse, she not so much.
So managed to get doc to extend hospice 2 mo. Otherwise visiting non hospice pts right now is stricter. Pain in the ass. Manager looked in at hour 3 and i was giving her glucera. I didn't look at her and she quickly left. Another hour of peace. Anna spoke to her mom on my phone in gibberish when manager looked in again. I didn't look and she left. I left half hour later once I thought mother was ok.
4.5 hours. Too long. My neck and back hurt. Head fuzzier and more sleepy...ugh. can't do this every day but could do 2 or 3 every other as long as I don't have too bad of a day..
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Post by Artista/CN on May 14, 2021 21:17:52 GMT
Getting a little harder to go to the assisted living every other day to feed lunch to Anna's mom. Couple days she's looking well and then like today she's very weak. Like a light switch. And when she spits food out or coughs with food in her mouth, oy. Gross. I'm not too queasy but it does get to me. Been doing this for 2.5 months. Would never complain to bro. 3 mo plus he's with pops 24/7 who goes in a commode. I don't plan on getting old. Hell no. Awful.
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