6 months

Hey, it’s been 6 months… you were warned…I did say I was not going to be consistent.

I went back to Alaska mid September and only just now returned to NC about a week ago. I’ll give you the cliff notes version. Mom HATES Brighton Beach…openly calls it prison. She thinks she can live on her own at her home and take care of her own affairs, care and manage on her own alone. In the same breath she will tell you she knows she’s declining. We’ve talked daily… I’ve been plucking along piecing together 4 different jobs to keep the wheels turning. A large chunk goes to pull ups and snacks and things so that she doesn’t panic ( she still does ) that she is going to run out of things. Idk if this is a generational thing or a her thing but unless she has 20 boxes of tissues and 4 boxes of pull ups she is running out of supplies as she puts it. This is not new…she’s a bit of a hoarder…albeit pretty things. Sheets, quilts, bedding, pottery, dishes…her house is overflowing with stuff. At first glance you would never know it but she is a mild hoarder and always has been. I screamed at her in September if she hadn’t spent all her money on stuff she would have more in the bank. That was an epic fight…I lashed out after she accused me of hiding things and stealing all her money and locking her away. I couldn’t help it…I was pushed to the brink, or what I thought at the time. It only got worse. She called me October and November and December screaming at me. Same accusations. All hours of the day and night. Meanwhile, I am near financial ruin…falling behind on everything and working multiple jobs to just scrape together what I can and keep a shred of my self. I am one step away from a go fund me, or signing up for only fans….but my feet aren’t that pretty. I am thankful a lovely human funded the ticket so I could make it back for this trip otherwise it was not happening. Landing here, 6 months is too long to go… or maybe I should just take care of my own life and not come at all but as I am constantly reminded there is no one else and the burden falls to me to ensure she is cared for and it is funded. She argues the point… and just wants to go home.

I’ve said for months if she doesn’t let them help her with dressing and things they will stop paying out on the LTC policy. She is lucky to have put this in place years ago through a job she had. Almost no one has this sort of coverage and there are criteria to be met…. she meets them but her stubborn manner, ego and pride and lack of patience have created a situation where they are likely going to stop coverage. I am waiting for the call as I type this – her case is going in front of the review panel this morning.

Last week we went to the dr. she wanted to see. He put a referral in for hospice care. They contacted us and we met with them on Friday. They sent an RN to do an assessment and she met the criteria to enroll in hospice care with her COPD diagnosis. They couldn’t use the aortic tear because frankly it is not coded as no one really ever lives through such a thing, never mind twice. So she will have an RN visit weekly and an aid once a week and the case social worker will come every other week. She said no thank you when the chaplain called yesterday but we did have a visit with the social worker at the house as we were there for the afternoon preparing for tax filing… fun stuff.

The woman chatted with mom for over an hour and heard her out about wanting to come home. Mom thinks she can come home on her own and be alone. She doesn’t believe she needs anyone at the house more than an hour once a week or so. I have said for months if she goes home then I have to come and live with her, she can’t be alone overnight or extended time frames. It always ends in a heated discussion and a temper tantrum. Well, the case worked said… it would not be safe for her to be home alone for extended periods and 24 hour care would be needed for her to be at home especially since there is no one else besides me and I live so far away. FINALLY someone besides me said it. It was also explained if she was home and there was not someone here with her that they (hospice ) would HAVE to file a report with the state and she would be put in a facility with no choice in the matter… she is not pleased, she was MAD AF when I let her last night and of course no one knows what they are talking about.

A concession would be 7am to 10pm along with cameras inside, a lockbox with a key outside and a life alert button for her to wear overnight. Both were not acceptable options in her opinion and she continued to defend her stance and disagree. Well, then she stays at Brighton Beach. But the caveat is she is not qualifying for the LTC insurance because she is not allowing anyone to help her with ADL’s aside from the weekly shower. Her opinion is they are short staffed and no one is there when she is ready to get dressed or change her O2 tank or go for meals and she isn’t going to wait 45 minutes for someone to come and they don’t come when she calls. It is always someone else’s short comings – they don’t clean her room, or empty her trash when she expects them to… they don’t do this or that and she hates everyone and everyone is stupid and they don’t know… including me. She is miserable. She chooses to not accept help but she won’t see it that way. But in making this choice is has created a situation where they will no longer pay out the claim so the options are:

1. She stays at Brighton Beach with Hospice Care support ( nurse once a week, aid once a week, social worked every other week ) , we sell her house to pay for this and the money runs out in 3 years if we are lucky to get that long out of the money… at this point I think she is going to outlive me.
2. She moves home, there is no bill for hospice and no money to pay for a personal care service or 24 hour home care and as the only child of a single cranky lady it is my cross to bear to move in and be her live in care giver. This means I give up my cabin, life and and my community in Alaska and become her lackey. I should be grateful to have the time with my mother, it is my duty as her child… she is not an easy woman and her expectations are irrational. We have never had the best relationship… it has always been one where I have placated her. I don’t think she really knows who I am as a human, in her mind I will always be the kid and she thinks she knows me as a human but she doesn’t, it’s her version of who she expects me to be.

Now, I have booked a few weddings in June and started to try to piece some more profitable work together and building back my floral and event production business. It’s been percolating and starting to get some traction back. So of course I am in a conundrum… if they are done paying out the premium and there is no money to pay Brighton Beach for May then she has to go somewhere and that is home but then I cannot leave because there is no one else and no money to support a care giver. I looked, it’s about $20,000. a month to have her cared for at home and that is just the care giver…none of the other every day life expenses. To keep her at Brighton Beach it would be a pay out of pocket situation, because well, you read this far. I don’t think her house will sell in a week so you see the pickle. This is the ball of stress that I carry constantly. I’ve let my own life go to shit and that is that other part of the ball of stress.

That’s where we are at. My rent is paid…I’ve got that going for me. I am so thankful for an incredible community of people essentially worldwide…friends who are my family have messaged and checked in daily. I appreciate all of the kind words and thoughts. I left the greenhouse flower shop stocked with dried bouquets back in Alaska and each time someone buys one and I get the VENMO notification it brings me a moment of joy that person has no idea how thankful I am for those bouquet sales. At the end of the day I have nothing left and no words to speak. I cannot wait to chat and laugh and high fives and hugs… some day again. Until then, we will see what today brings.