Hello all,
I'm a 24 year old female who has been caring for my mother for 7 years now due to an autoimmune liver disease that led to liver failure and consequent transplant and diabetes. When she first started to get sick I was in my junior year of high school and I have been my mother's caregiver ever since. I have handled all of her financial obligations and household duties despite having two older (27 and 29) siblings who although aren't as close with my mother, are still capable of helping her for certain things. She still requires daily care and has very frequent doctors appointments but I am at a point where I feel my life is on hold.
I am currently in school for my masters degree and have been with my boyfriend for 6 of the past 7 years as a caregiver. He moved in to help me when my mother went in for her transplant as she was hospitalized for months and I was unable to maintain the household myself and be at the hospital with her, which was out of state. I am at a point where I feel I am now ready to start my own life outside of my childhood house but do not know how to approach the subject as my mother still requires my daily care. We are extremely close and I fear me telling her I want to move out and be my own person rather than a constant caregiver will send her into a depression as she will then be in the house alone.
She is not in a position where I feel that she needs to move into any assisted living as she is only 52, but I do feel that she will not be able to be without someone there for her medical needs (she has some drains in her liver that she cannot reach that have dressing and require to be cleaned daily. While I do feel a nurse can come in to do these tasks, I am not sure she will be open to the idea as she has never had to have outside care as I have always made myself available.
My siblings do not seem overly willing to help with the more delicate tasks as they do not have the experience I do, but I only have it due to no one else wanting to. I'm at my end and am just looking for people who understand to help me with my sanity over this situation.
But...I tell you this only in order to encourage you to live your life while you are young! My 2 kids have always had my blessing to spread their wings and fly and not worry about me or be tied down by me. They have done so much in their young adult lives and live very far from me....and are happy! I havr a good relationship with both of them. Live your life now because you do not know what the future will bring and if you wait to live your life, it may be too late. I wish you lots of luck and many hugs of support.
Your mom is being selfish leaving all the care to you. She can pay cnas or nurses to help. Or offer you breaks.
Are you able to wait till your done school? Maybe you can get a job out of the area. That is the perfect excuse. Cant find a job close. Too bad, I need to work in my field where I can get a job. And line up an apartment out of the area.
If you cont to live close by, you will be forced to continue caregiving. You dont want that. Your gonna have to phone or write your older siblings telling them it's their turn to step up. You have done enough. Do that after you have lined all your ducks in a row. That way there is NO GOING BACK.
As long as you are still in the home, still close by, you will have all other parties telling you, you are selfish and they will try to force you to continue free caregiving. I'm sure you have burn out maybe depression from this job being forced upon you. Tell them that, but if will fall on deaf ears.
They are not going to want to step up. You have made it too convenient. They are going to say hurtful things. You must stay strong and not listen or give into their rants. Keep repeating over and over I have a job lined up. I'm leaving. No negotiations.
You will have to give your mom notice to find someone. There will be tears, tantrums, guilt trips and maybe even blackmail or offers of money to stay. Dont give in. You wont have a life!
That is how I would do it.
If you try to do it during your schooling, you will have more stress than you can manage. You can also tell your mom you have a lot more research and studying to do. You wont be around. Find a new place to study. That way she is forced to find someone to help her. Get that going now. Dont be available by phone for every emergency or she will have you on a short leash. That is what the cna is for. You are going to have to develop a thick skin and stay strong or all your family will pull you back in. Good luck.
You’ve done a spectacular job as caregiver. Now is your time to shine. You will have to get certain important papers that only Elder law Atty can provide. Go there with her so you can be appointed her financial POA & Health proxy poa. Also, she should make out a Will.
She will need live in help it sounds like. Either that or 2 aides on 12 hr shifts. ...& what happens when one of them don’t show up? You’ll have to stay home!!!
What happens if you get injured or get sick?
I’m 60 & caring for a 92 yo mother with dementia...can’t walk, incontinent, sometimes agitated or even violent. When I was sick with stomach virus, the Aide refused to stay longer or cover for me. I had nobody to replace me.
If she has resources, she can private pay until Medicaid kicks in .
Start now to tour places like Assisted living or Skilled Nursing Facilities. She would qualify since she needs nursing care from liver problems. If she’s not coming directly from hospital, they will tell you to get PRI Nursing Assessment...& then take the paper to SNF. Talk to Admissions..
HUGS 🤗
CaregiverL
Decide how you would like to be involved in your mom's life... and what you would like your life to be like. Then, talk to your mom about the dreams for your life. Discuss with her how you plan to obtain your dreams. Then, talk to her about how you'll both need to make some changes - her allowing others to care for her and you not being there as much or moving out. Explain how social worker has options and resources you can both look at and to decide together on the best ones. Follow-through and get the care your mom needs arranged before you head off to work on your dreams.
My mother does not receive any public funds, as we are direct payers to 4 part-time caregivers --- yes it takes a lot when considering all of the needs of your loved one, and you have to have contingency plans in place in case a caregiver calls in sick or has an unforeseen situation that keeps her/him away with short notice.
I purposely hired 4 different people who shared our family faith (Christian), have current State-issued fingerprint clearance cards, are CPR and first-aid trained, and who would be willing to take an online training course on food preparation and safety (same as a restuarant employee). I took all of these steps because my due diligence in finding quality caregivers to assist my mother while I am at work matters to me for my peace of mind.
For any of us to help you with sound advice, we just need to know more about your mother's current income level, current outside assistance being received (weekly nurse check-up, etc), if your mother would be willing to sit down with a counselor who specializes in finding programs for in-home assistance that she may qualify for, and whether you are feeling any pressure from your boyfriend to move out.
Me and my wife could offer you direct advice in private messages if we had more info to consider. Whatever you do, don't do anything quickly. Take the time to thoroughly research the options, and just know that having a life as a caregiver is possible when you research properly and have the right help.
It's by no means easy to care for a loved one, but with strenghth from God and using my intelligence to research, I was able to keep my sanity, keep my peace knowing that I am pleasing God, earn a degree, become a senior manager, and have a family while balancing out the needs of caring for my parents. Just know that each case is different and what didn't work for a lot of people on this site, may actually work for you, and vice versa. You are an amazing daughter and you will reap what you have shown in more ways than you will know.