For those that caretake from a distance or support siblings from afar, what are some of the things you do?
I'm burned out on my mom and have been for a long time. My sister knows this, but basically tells me she doesn't know what I want her to do. I think she wants to help, even though she has her own issues with our narc mother and has been pretty hands off since this whole thing started a few years ago.
My mom is too "competent" to be forced into professional care right now, so that's not something I need help with, yet. I don't even know what kind of help to ask for from a long distance sibling.
My sister is willing and able to take my mom for a week so I can get a break, but it's always hit or miss, infrequent and my mom has to agree, which she often won't.
Any advice on this?
1. we have a monthly "Zoom with Dad" meeting, that my sister who lives 2000 miles away takes charge of setting up and sending reminders to the family members. Siblings and grandchildren are invited to participate as they can. Sometimes we have lots of folks, sometimes just a few. But it is something that Dad looks forward to all month, and gives him a week of stories to share again.
2. Adult/teenaged grandchildren are invited to "Facetime with Grandpa", taking about 30 minutes to visit over cellphone or computer. Dad loves these, and talks about it for days. Younger ones share their school projects, or their songs.
3. One family member is "on retainer" to remote into Dad's computer on a monthly basis to keep it clean of malware and malfunctions. This is a blessing, because there's no telling what Dad has downloaded, or what he did pushing the wrong buttons.
4. Several make a point of calling while travelling, "I need someone to help me pass the time while I drive ..." He loves these impromptu calls.
5. Two siblings help with his finances, and most items are now automated for him. He feels in control, and checks his balance frequently.
6. All his medications are mailed to the house, which is also a godsend.
7. The siblings that live close by invite him to come visit for a week during special occasions, giving me a break. Sometimes the special occasion is made up, but it gives Dad an opportunity to visit others, and spend time planning for it.
8. We go out to eat weekly.
9. Dad has small chores that he does religiously - like take out the garbage, or run the roomba, or Monday laundry day. He takes them very seriously. It makes him feel like an important part of the household.
10. We have a group text of all the siblings and Dad. Every day Dad has to send us a message to let us know how he is doing. The messages are often silly, but it gives us the opportunity to respond and interact informally. He reports his "morning numbers" (Blood sugar and blood pressure), his exercise of the day, and what he ate for lunch. Sounds silly, but it has built a stronger bond with all of us. And if he forgets, someone will ask where the daily message is.
A few of my siblings are unable to participate much. They send puzzles or games, then Dad can call them to talk about the activities with them. I think flexibility and commitment are the most important parts. You can't commit to something you will not be able to do on a regular basis. Have an open, frank conversation with your siblings, and find out what they are WILLING to do, and see how that can help you.
We have a back up plan. If things suddenly go wrong, and I can't take care of Dad, the plan is already in place. I send these siblings monthly status texts. What went well, foods that suddenly cause a problem, frustrations, and successes. This gives me an opportunity to reflect, vent, and help them to better understand how they can help. And, they can offer suggestions and interventions. Or step in to help Dad.
Siblings need to hear the good things as well as the difficulties, or they will feel overwhelmed and hesitant to help. The earlier the communication is kept open, the easier it will be to have the serious conversations later.
one thing I did to help was to get mail order meals delivered. It is was from a company called Moms Meals. Kaiser patients get a discount. My brother said it made fixing her food easier. I ordered on line and had delivered to her home. I also paid for this out of my pocket.
If mom has hobbies - sibling can send care packages with gift cards for takeout or painting kits - crossword books - moms favorites (treats - books - bath soaps or some new clothing items).
Hire someone to clean for you - or pick a few times a month that she has dinner delivered to all of you. (Every Monday you know a meal is coming).
This all depends on moms needs/capabilities - does mom use daily supplies? Let sibling take over ordering supplies.
Does your FaceTime? Does she use a computer - find apps that mom enjoys - does mom like to read - my mom listens to books on audible and I tell people they can send her gift cards for new books - etc.
If sibling found mom a companion - (and if need be helped pay for it) better if sib came to town and helped organize and train that companion would be huge for me. I cannot explain how much time and effort has gone into finding and training people for mom - getting them to know her personality - her wants - her likes and dislikes etc.
Oh sorry, the question was what can help - not what I get 🙃.
How about a combined force with you *on message*.. whatever you both decide that message is..
eg That other people (non-you people) will be coming around - to houseclean, chat to, sit with her while you go out (alone or with friends). To get used to it or hit the road Lady!
Down the track, that message may include... time to visit Sis next week. Option is 1. Sis's place or 2. the local NH - choose one I don't mind which.
As you can tell I have ZERO patience with 'but I want YOU only to do it', or 'I don't want to'. Well I don't want ExhaustedPiper to fall over feint - so there 😝
Start now interviewing and talking to caregivers and find out what they charge, how many hours they’ll work a day. Ask if they’ll cook dinner or make lunch, if they have a healthy car and good insurance and if they’ll run errands with your mom. Make sure they have a reference/past client you can call (and call them). We hired and fired 5 caregivers before we found one that both me and mom liked.
Please don’t think you can do this alone, you are already exhausted. Some people can do it, bless them but most of us can’t.
One gal quit, walked out because I had surgery and asked her for a glass of water (she was to be there all day). I loved this gal but she didn’t work. When our Angel Angela showed up it all worked.
caregivers need to remember that we are emotional people not just clients. Family, usually adult children, are in need of this reprieve and sometimes we are not as professional. If your sibling cannot help you physically ask if you can hire someone at your expense.
My mom passed Mar 2020 and I have 5 siblings, only 2 couldn’t help, the others did in their own way.
Get some help Piper. You need a life too. Love and light
Ask your sister to come every quarter and spend two weeks and to take all appointments, etc. You might meet with her the night before she goes to moms to hand over a notebook with all the details and the last night for a debriefing but be absent otherwise. Then you can plan your life and she can plan hers.
One week is not long enough and you need the ability to look forward to this time. It needs to be on your calendar. If you plan a vacation for that time, let sister stay next door at your house while she is there and maybe she will be more likely to come the next quarter. In exchange try not to vent to sister. Vent here. Try not to talk about how awful it is except to your therapist and here. I learned that my daughter finds it very stressful for me to vent to her about things she is helpless to do anything about. Sometimes I have a hard time carrying on a conversation because all I can think or talk about is another illness, death or caregiving issue. I have to refresh my mind, to look for balance. Take a walk, work on a hobby, scrub the oven, pull weeds. Read a good book. Rest my mind.
If every time your sister sees your name on her phone, she cringes, it becomes a vicious cycle.
Don’t expect sister to do things as you would. I noticed both my SIL and my own sister were highly critical of what others did. They wanted help but knowing the parents preferences better than anyone else, they would cringe whenever a taboo subject was raised or unsolicited advise offered. I read about that often on this site.
An out of towner, golden child (usually male) comes into town and stirs the pot. the primary caregiver is already a crabby creature from all the abuse they’ve taken and can’t appreciate the gifts the fresh sibling brings. I remember my dad pointing out that when his BIL came to visit his mom, my GM, he would bring a gift for the household. My dad couldn’t appreciate it. What he would have appreciated was BIL taking his mother home with him. It was too late for small tokens. That sounds like where you are.
Tell your sister this phase will pass as your moms condition progresses and a different sacrifice might be requested. Plan on a review every six months or so.
Try to not be so much of a caregiver as a care manager. Manage her care. When she needs a caregiver, hire one. You will be able to manage her care longer that way. Supply what she needs, not what she wants. If they are the same thing. Great. If not..oh well…
One other thought is let sister do the things that need doing that you just aren’t up for. She gets to go back home after all. My FIL had stopped paying his bills. SIL was noticing bill collectors calling and leaving messages on the recorder. No one interfered with FIL and his pocket book. His son came from out of town, loaded FIL in the car and took him to the bank and had him put all reoccurring bills on auto pay. He raised heck but did it. For weeks later he complained, checked the bills against his bank statement for months, if not years but the bills got paid. FIL would complain about how pushy his son was, how he could still pay his own bills, etc. but it was done and a huge relief to all. To my knowledge that was the only thing BIL ever did to help with the caregiving but it was a good thing that needed doing. SIL complained about how unnecessarily rough her brother was with her dad (yes, he did talk back 🤨) and so it goes.
Best wishes,
DL
Housecleaning - she can clean when she is in town or hire a cleaner
Groceries - she may pay for delivery service, but expect to pay for the food
Yardwork - she might pay for a service to cut grass, trim shrubbery...
She might take mom to get her hair cut, nails done...
She might take mom out for a meal or a movie so you can have some free time
In His Service,
Reverend Council✝️💕
I do most of the scheduling and communicating with doctors because it can all either be done on line or via the phone. I do the waiting on hold or waiting for a call back, messaging through their messaging systems. I also order all the medications, do all the forms etc and order supplies that are then delivered. COVID got us to set up on line grocery shopping as well so I do that with her and then my brother or someone picks it up (they load the bags in the car) saves him so much time! He of course has to pick stuff up, new meds, meds that didn’t come in time…take her to appointments, though I do try to schedule those I can when I’m going to be there, all the on the ground stuff. Often during doctor appointments he will have me on speaker phone and of course the doctors know me and are used to how we balance things so that works. I do take my turns getting her up and taking pills, blood sugar etc, checking in several times a day and then same at the end of her day (walking her through getting the station she wants on the tv, lol) all via her Echo Show’s and the camera we have over her med area but for the most part he is hands on and I’m everything else. It makes the whole package so much easier when you can share the load and have someone to discuss with. Sometimes it’s just helpful to have someone to vent to or bounce ideas off of that is also intimately involved.
It is wonderful that you two have each other. Darn, I always wanted a sister!
6 months with you
6 months with sister.
While mom is with one of you, the other one should call and talk to mom a few minutes every day.
If mom can't afford Caregiver help, then have sister pay for a Caregiver to come over a few hrs a 2-3 days a week or give you 1 whole day a week to give you a break.
Call and have your mom go to Adult Day Care during the week.
Have mom move in to an Assisted Living or a Senior Apartment.
Basically a long distance person can really only call everyday and help pay money for a Caregiver.
Tell mom you’re going on a vacation and she can manage on her own or stay with your sister. (Don’t make it an idle threat.) Consider it leaving the house to the teenage: fill the frig, get necessities, call to check in, take the car keys if it’s an issue.
If she’s competent, she should be okay.
Find a high school or college student that likes old people to visit and do odd chores several hours a couple times a week. They can help with odd jobs, visit, take them outside, watch tv with them and have snacks. Often, a young person really cheers up us old folks. Even a young mother who meets the liking grandparent qualification might like a job a couple days a week during school hours to do such things. Just socializing and helping out. Maybe light housekeeping. Heck, Mom might like to see her kids occasionally. A young woman with a baby. Aggie adored babies. In fact, when she went to assisted living, all the ladies LOVED babies. Check with your church, local schools, etc. for recommendations.
Also, ANYTIME another relative can come, even not planned, is a good time. You don't have to be there all the time; they can learn the routine. You are around for backup, which they worry about.
Also, tell them how MUCH placement will cost, and they will have to share the expense and/or difficulty of talking Mom into it. You will not continue doing everything. They might decide to cough up more money for help at home after that.
You will need to provide her with a grocery list each week.
She could also order home delivery medications and household needs other than groceries from Amazon.
You may feel a great relief not having to worry about these chores. My sister took
over these items and it has been a huge relief.
Search for a part time or full time caregiver to give you much needed time away. Mom may hate it but she will get used to it. Since she is next door in the beginning you can do a check in here and there.
Get some help before the stress kills you!
You can ask for financial help for a cleaning lady. More frequent phone calls to check in, maybe even daily will maybe foster a closer relationship with your sister so that your Mom will WANT to go see her. The week away will be a wonderful break for you - so pretend you're going away so Mom will find it harder to resist going to your sisters. My advice is to take whatever you can get, because as time goes on - so will your mothers needs.
We also do video chats with them and the grandbaby who is here where I live. Fortunately they don't need physical care yet but groceries and socialization is important. It's a real sacrifice to drive three hours each way but I don't want to have any guilt or regret after they pass.
I like someone's idea about them getting mail. I will start sending them packages like grand baby art or photos. I also like the answer about doing the bills and such but be transparent w your siblings so they don't suspect you are pilfering money. Make copies of transactions to show them.
If you live so far you need to fly in, perhaps get a delta skymile card And rack up flying Miles..to use for the visit .
Best wishes to you! We are all in this together!
Also, if the person is internet/technically savvy and an organizer...let them organize anything that needs organized! Let them draw up schedules, organize documents/files on Dropbox or Google docs, etc. If there's multiple people trying to help, then maybe an online calendar of who's coming to do what when would be helpful. If everyone's always wondering what happened at that doc appointment, maybe an up to date document where doc visit summaries are posted would be helpful. These sorts of things can be managed from everywhere - just make sure the organizer is sent all the info, and let them organize it/put it where people can find it.
Who knows what it will be next! I truly enjoy time spent with Mom and these favors usually include having a lunch or dinner with her. But it's unpredictable and endless! She thinks of something and seems to need it immediately. When my siblings ask what they can do to help....
Oh, wait, they don't.
When I ask for help from my siblings it's hard to specify what they can do. I have concluded the most valuable thing they could give me is some time. So I have asked them to each call her once a week, at their convenience, and spend no less than 30 minutes on the phone with her. They each chose their day to call so it would fit their schedule. And the call should no be simply "how you doing Mom? Gotta go now". It should be a real conversation. Talk about a book you've read, have a discussion about To Vax or Not To Vax, tell Mom what her great-grandchildren are up to. Mom is up on current events, intelligent, open-minded and articulate and can hold her own on any topic. She can facetime and would love to see her great grandchildren. And if she talks to someone else every day she is not as likely to call me several times a day.
I ALWAYS answer when she calls. And she calls a couple times a day. One call can easily take an hour. I don't know if she could be calling to say hi or to tell me she's in pain, or has fallen. I never get a break from my phone and would love it if I could go out with friends and leave my phone home. Or stay home and watch tv and not carry my phone into the bathroom or kitchen everytime.
Sadly, it works for a week or two, then falls apart and I just hear "I haven't heard from your brothers/sisters in weeks".
As an out-of-towner, more contact with the loved one would help the caregiver a lot.
Mom's situation will decline, I know. She will need a lot more care. I went thru my Dad's years of Alzheimers without much help from siblings and I don't have the strength, emotionally or physically to care for Mom without help when the time comes.
So, out-of-town siblings, give your loved one a call. Even if they don't know who you are, strike up a conversation, read a story, have a Show Tune sing-along, ask about favorite dishes, vacations, pets from their past. Older people love to tell about times they mis-behaved and got in trouble (or got away with it!) Be creative. You might just enjoy spending time with your parent when the focus isn't on health/money/living arrangements etc.