Hello, I am a 22F with some background as a home health aide. I'm starting my journey with my good friend/roommate in the caregiver world. She is almost 70 years old with type 1.5 diabetes, CHF, kidney issues, and a plethora of other things. She also has a bit of trouble taking care of herself. Cognitively, she's a bit on the forgetful side but nothing wild.
I have decided to be her caregiver until the end of her life, as she wishes to pass at home, which is understandable. I don't think it's quite that close yet. I've worked in Home Health but I'm starting from basically scratch how to do this. I want to not get in her way, be overbearing or infantalizing. I want her to have her independence as a person. At the same time, I want to be a good caregiver. I'm trying to craft meals/cook, set up meds...more physical house work and tidying. I just feel like I'm wandering a little clueless.
Knowing what I'm in for, should I start with a care plan? I know I'll need it eventually, maybe even sooner rather than later? Should I ask a social worker how to navigate this? I want to address her needs, but it's beyond what I know 100% for certain.
Does anyone have advice of WHO exactly to ask for any help or any resources to share? I want to get this right. She does not want a nursing home. I don't blame her. I want to do right by her. I wish I had more experience in long-term care, but have to start somewhere, I suppose. Thanks!
70 is not particularly old, and people nowadays can live FOREVER even with a bunch of illnesses like your friend’s. She could live for another 10, 15 years— who knows? Modern medicine is great at keeping people going indefinitely.
Does your friend have any family? How will you be paid? How will you cope with living AND working in the same place, day after day? What are her care needs and can one person truly do it the way it should be done?
To be frank I don’t think this is a great idea but at least make sure you go into it with an escape plan if it goes bad. No one is guaranteed dying in their home and caregiving has to work for both parties.
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And, my personal experience / recommendations__________________________
(2a) Be able to set boundaries / limits. Know what you need to do - to take care of yourself first. If you do not renew yourself, you will not be able to care for anyone else. This work is exhausting in every way (physically, mentally, emotionally, spiritually, psychologically).
(2b) Elders (clients) will project all their fears, pain, anger on to YOU. You must learn how to deal with it or you will burn out and have no quality of life (loss of sleep, exhaustion, emotionally depleted).
(3) While another mentioned Teepa SNOW, take her webinars. I did this for almost two years. Buy her books. Additionally, I encourage you to get the CNA training. It is a foundation that will serve you for the rest of your life.
(4) Get everything in writing. This is a business. For many years when I worked at an elder community, I was the only care providers who provided a list of services and provided weekly invoices. You need to keep accurate records for tax purposes.
(5) Know that you MUST make time for yourself to renew - and enjoy your life. You need balance to keep going - you are more than your work or your clients. This means back-up caregiver support, taking time off weekly - having fun. Some people like 24 hour shifts or 2-3 day shifts. I did one 24 hour shift and that was enough for me. I was comfortable up to 6-8 hours/day with one person although I had 4-6 clients concurrently with varying schedules which worked out well for me. Everyone needs to find their own rhythm and what works.
(6) I keep accurate records (date and time indicated) of how a person is doing / changing. Do not rely on your memory. This is important for three main reasons:
a) Documentation can be useful in medical appts to see how things are progressing / declining.
b) Family has a record; and
c) Other caregivers need to know what is going on - day-to-day.
While you want to do right by your clients, you first need to do right by you.
* Know your limits (both emotionally and physically).
* Take care of your day to day health / well-being (get enough sleep, exercise, have fun, eat healthier than not).
* When you set an intention / boundary - KEEP IT. Others will not take you seriously if you make empty statements. Never let anyone 'walk all over you.'
Gena-Touch Matters
I would be in close contact with all family about this. I would find out what documents are done and in place, POA for family member, when and how you will be paid and by whom, who to contact in emergency, what rules and boundaries apply to their loved one's care and etc.
There needs to be LEGAL involvement here. If this is not done, then just picture in your own head a move to do this, being in place, and suddenly seeing a confetti bomb explode with flotsam and jetsam everywhere. Absolute chaos.
THIS NEEDS AN ATTORNEY and a CONTRACT or should not be attempted.
Friendships are thus easily lost.
Are you going to be getting paid LEGALLY? You may be doing this for the next 15 or 20 years. that is a lot of Social Security quarters that you may lose if pay is not done correctly. You have to think about what will happen to you when you are nearing retirement. (yes Social Security will still be around)
What happens when you can no longer safely care for her? Does she have another plan?
Are you going to be the only caregiver? (FYI no one can work 24/7/365 not only is it impossible but it is not legal)
Oh, working for "room and board" is also not legal.
What is your "line in the sand"? What can you do? What can't you do? and what won't you do?
Does she have family? Who will crawl out of the woodwork to try to step in to make claims on property and try to place her in care facility?
Are you POA? Are you going to be able to make decisions for her financially and medically? Make sure that you are doing everything you can to protect yourself from accusations of financial abuse. Document everything, keep records and receipts.
You sound like a really good person but business is business and family is family. You're neither but you could end up doing everything and end up with nothing.
The key here is "balance". I agree with everyone hear on the thread about "get everything in writing". You are only 22-years-old. If I were you on would pursue further education for yourself because in your line of work it's back-breaking, underpaid and overworked.
Now when a "friend/roommate" situation comes into the equation there a lot of lines crossed it's a different relationship with CNA/patient. You go home at night, you work your shift and you have your time off. 24-7-365 days year is impossible.
You could call on the troops and find out what the person's health insurance includes--homecare, p/t, o/t, nursing, home blood draw, cleaning, etc. Order everything online--mail order prescriptions to save $$$, Amazon for clothing.
Don't be surprised if you do all the work and in the end your friend's long lost cousins show up and cash in...yes, this does happen even though they are travelling the world and you are home cleaning the toilet and using a coupon for everything. Yes, others will let you do all the work.
This is a very rewarding career / work path although it takes a very unique and special person to be able to do it. It requires, among so much more, being about to:
* Project how another feels; see life from their point of view. This takes experience.
* Know that any and everything can change in a moment and one needs to have the wherewithal to adjust and think of 'what is the next 'best' step / way to proceed.
* A person needs to know they needs breaks / respites / regular time off to function at their full capacity and be present to focus on and assist another. It isn't being a 'warrior' to do for another because they 'need' the help (they do) ... a responsible care provider will ensure that they get enough rest / renewal time and have back-up care in case of emergency / or when plans / needs change.
* And, what many cannot or do not want to do, build a relationship with an elder who dies. Dealing with death isn't for the faint of heart. It is sad and grief filled time ... I lost around 5-10 people over the years. We know it is going to happen. The best we can do is be as compassionate and caring as possible when we are with the person ... knowing that they could possibly transition any moment, or week or month. We never know.
I do understand that many people here are family members 'tossed' into situations they are not prepared nor trained for and end up overwhelmed if not on the verge of a breakdown. And, then there are the family dynamics from decades ago, if not childhood / wounding-trauma ... and managing these unhealed wounding while wanting / trying or feeling a DUTY to care for that parent - now - when the roles are somewhat reversed, along with lots of unresolved anger, hurt, pain. It is really a challenge, although could be a gift if one learns lessons / growth from it, like asserting themselves and/or knowing their limits when they must take a break or get additional support/helpers. And, learning to forgive. A huge lesson for me. We do not forget although we forgive FOR OUR SELF HEALING ... to be able to move beyond the stuck pain/resentments.
This writer is fortunate in that she is working in this field (as I do although I also worked with my companion of 18 years for the last six years of his life)) and is giving herself as much information and experience as possible in order to pursue working with others. Not everyone is so lucky.
If I were this young, I would record experiences and "How I handled THIS" ... could be one page stories which could be interesting reading and more important, help others on their path in how to proceed in dicy situations.
Gena / Touch Matters
Also, a couple thoughts on being the legal caregiver for an elderly roommate:
—What happens when you both have the flu and are sick in bed? Who will come help?
—Even if it’s your “day off,” would you be able to have friends over for a bbq or whatever?
—What about dating? Will boyfriends want to come over and hang out when your roommate is an elderly woman with health problems?
I think you should give some thoughts to those type of work and social life issues.
Finally, my mom has CHF, Afib, CKD, diabetes etc. as well. She is 84 and still chugging along. It’s not out of the question for your friend to live another 10-15 years, at least. You would be approaching 40 years old by then.
If she wants to wear her clothes to bed…who cares? Make life easier on her and it will make life easier on you. Don’t worry about too much tv. Our fav. shows are our friends who visit us. We look forward to them. Get home health..medicare pays for it. They will pay for PT etc. It won’t work if you do not learn to enjoy the life you are taking on.