Hi all,
In the last few months, I've assumed more responsibility in my Grandmother's affairs. She is 83, lives alone in a 2-story home in NY state, and is declining. I'm 30F, married, and live a few hours away. I'm sorry for writing a book here. I literally have no one to talk to. My mother is an only child, and she and Grandma hate each other and no longer speak. (I don't speak to my mother either). My sister isn't in a position to help. My husband says he "doesn't want to get involved" because "someone else" will deal with it. Believe me, I wish someone else would.. And I feel guilty for saying that. I'm feeling really lost and terrible.
Previous post here: https://www.agingcare.com/questions/what-can-we-do-can-we-compel-grandma-into-a-safer-living-arrangement-and-how-do-we-pay-for-it-448248.htm?orderby=recent
Honestly, Grandma is a "tough customer". She had been diagnosed with Borderline Personality Disorder. She tends to fire people for no reason. She used to like to play emotional games with people, but now I don't know what is a game and what is cognitive decline.
I frequently buy Grandma supplies and have them shipped to her. I signed her up for local charitable meal deliveries and found a volunteer grocery shopper in her area. She has been extremely resistant to these services, but has accepted them more recently. She can no longer anticipate when she will run out of supplies, so if she does notify me, it will be after she has not eaten for a day... I try to track her rate of consumption on a calendar and ship things to her sooner than she will need them.
I also mail her a narrative "photo diary" 1-2 times per month, so she can reference pictures and keep albums of the family, our homes, pets, her great-grandchild, and family events, which really seemed to help orient her... but, this isn't helping so much any more. She used to only become slightly confused, occasionally during dusk, but now it's become much more than that... She frequently complains of feeling "confused" or "mixed up", and she needs a lot of prompting to maintain a conversation. She's physically become very frail, weak, and struggles to walk. She is greatly neglecting her physical hygiene (for a little while, I was driving several hours to see her, give her a bath, then drive back home). She is a fall-risk and has fallen several times - twice in the last 3 months requiring an ambulance trip, same day discharge.
Grandma's neighbor Maureen is a kind and friendly woman, who has been a Godsend. She keeps me posted on Grandma's needs and activities - but it's really become much more than she signed up for... Recently, Grandma made Maureen her medical proxy and Maureen is very uncomfortable with it.
We also have a Social Worker from Adult Protective Services, named Zack. He has been helpful in arranging incontinence supplies and recently, home welfare visits. This past week, he paid Grandma a visit at our request. He fixed Grandma's microwave (simple circuit breaker issue), and got her cable turned back on (it was turned off due to lack of payment, she got the checks/ envelopes mixed up when she mailed the utility payments...). She did not even tell me about either of these issues, and was unable to troubleshoot them herself.
Maureen, Zack, and I have tried several times previously to arrange a home aide. She has previously agreed, then withdrawn consent. She fears they will rob her. I had a home safe sent to her home this week, so she can put any valuables in it and hopefully be more compliant. She is now admitting she needs in-home help. Zack will go to her house this Monday and complete the 3-hour long phone/ video assessment with Grandma.
Will a home aide really help as much as I hope it will? I feel like I've built this up in my head as the answer to all our problems. I can't move closer; my husband and I were supposed to move out of the country next month. I'm so overwhelmed I feel like I'm losing my mind.
Zack and Maureen sound great, but you need more help. The aides that we had were great. They cooked, did some light cleaning, laundry, fed the dogs. They helped her dress, kept her company, which was probably the best part.
We did keep valuables put away, no need tempting anyone, but never had any problem.
I had a woman that acted as a sort of care manager. She made sure that the helpers were scheduled as needed and would fill in as needed. We couldn’t have made it without her. It allowed me to relax a little when I was home.
I had to let one aide go due to a personality clash between her and my mom, but even that went okay.
We were very fortunate that mom had some money put away to pay for all of this care. She also lived in a rural area which made salaries a little more affordable as well.
The last 2 caregivers I hired were AMAZING. I contacted the local Community College and spoke to the director of the Nursing program and I said I was interested in hiring caregivers and she gave a few my contact information The two I hired had completed the CNA certification course, that is required prior to going to Nursing school and I told them I would be willing to work with their upcoming course schedule. I think there were with me/us for about 6 months and my Husband died right before the start of the Nursing School program that these students wanted to take. I told them both that they were Angels.
I think a home aide would be a godsend for your grma (and you!). If you go through an agency, it's a lot easier than hiring priovately, especially since you are so far away. You mention your grma is a difficult person, and if you go through an agency they can keep trying to find someone who is a good fit with grma if she "fires" or doesn't get on with someone. Most agencies these days prefer to send people for 4-hour shifts and charge more per hour for shorter shifts.
It turns out Grandma canceled the home aide evaluation. I could've cried. She called Zack from APS that morning, canceled, cursed him out, then called him later and ranted almost incoherently about him canceling on her. She has been increasingly erratic lately... She has been refusing to answer the door for the volunteer shopper (or will answer without dressing appropriately). She will often will not answer the phone for days at a time, and is now (falsely) saying that Zack made inappropriate advances the last time he was at her home. Maureen (the very helpful neighbor) seems to be trying to distance herself from everything, and I'm feeling very alone. If Grandma does answer the phone, she often complains of feeling very tired, "mixed up", dizzy, or confused, and then will become defensive at the drop of a hat, and say she needs to go and rest, and to "give her a break" and not call for a while. She's back to saying she doesn't need any help at home, and has stopped doing any of the minimal hygiene practices she was doing... I'm feeling very hopeless. What are my options here?
Wait until she falls again and needs SNF rehab?
Wait until she is having a "bad day", is ranting, undressed, and unwashed, and has allowed herself to be completely out of food, and then call for a welfare check and hope they transport her somewhere?
If she goes to the hospital, what if literally everyone says she is unsafe at home and refuses to pick her up - will she be transported somewhere?
I'm starting to think it's better for her to be somewhere that she can get regular care.
I thought we could keep her in her home, but I'm feeling very discouraged. It's only a matter of time until she brings a terrible situation on herself. I think I keep holding on because I'm worried about the welfare of her cats, and I hope on some level I can "win" this fight.
My own late mother became overwhelmed at 92 years of age with the smallest things, e.g, incoming mail and Meals on Wheels. What she used to accomplish was then significantly diminished. She actually sobbed about her mail and I had to take over.