What do you do when there just is no help?
I am a caregiver for my parents. I have two sisters who live out of town and leave it all to me. I can get snippets of help financially, but only after begging. I do everything (housekeeping, bills, doctor's appointments, ER vigils, pet care, medicine, grocery shopping). My Dad nearly died two years ago, and although better, can longer give me any help with mom or do any of the job he once did. I can no longer work, and I never get a day off. Mom is riddled with health problems (COPD, CLL, kyphosis, back fractures, macular degeneration, hearing loss, chronic pain) and anxiety. She is also very needy. Very needy.
She was a very good mother and I want to help, but that often mean getting only a few hours of sleep at night. Her fears/issues mean that I never get to cater to any of my needs. I am depressed and her anxiety sets off my anxiety. I am sad all of the time. I feel like I have disappeared, and that no one ever sees me. I am willing to take help but none is ever offered. I have no money to pay for any. I have checked into to every "program" an filled out forms but no help ever comes. I have abandoned planning anything because Mom's illnesses interfere daily and I am tired of being disappointed. As I write this I have been called back to her 4 times. I have given up on any dreams of mine (I am 45). I don't have my own family, and people who I thought were friends have moved on without me.
I know there is nothing anything reading this can do for me, I really have turned to all options. I have cried to social workers, and they all tell me to check out things I have already done.
I am lonely, but I will keep gong.
Have you thought about LTC for both parents? It sounds as though your mother at least needs nursing home care. You can apply for Medicaid for her nursing home care and your father as community spouse will not lose his house. I really urge you to begin this process and start looking at nursing homes .
Please take care of yourself. You deserve to have your life back.
Does either parent have dementia?
Does anyone have a DPOA for your parents?
Have you spoken to the Area Agency on Aging and asked them to come assess your parents level of need?
What state are you living in?
Are you living with your parents in a home they own?
Give us a bit more info so we can give you some assistance.
Missn123, when the task is more than you can bear, which it certainly sounds like it is, you seek alternatives as others have suggested here. You can only do what you can do. (((Hugs to you!)))
I beg because I have lost all my income, and my sisters think Mom and Dad are 100% my responsibility since I live in their house to take care of them. They would love it if I could give up sleep completely and work at night as well as take care of the folks. I live in Iowa.
Nursing homes are not something I want to do with Mom. We tried Skilled Care and she went into a deep depression. Frankly, I one worked in a nursing home and have deep concerns about the ones in our town meeting her needs. My Dad would do okay in a nursing home setting, my Mom would give up and die quickly. I will not do that to her.
My mom qualified for the Medicaid waiver, but I had to choose the option of getting paid for a few hours a day (which has yet to be approved after months of paper work) and respite help. You cannot have both.
I wrote because it was therapeutic to just write how I feel. I am rather alone in my universe. I pray for others and wish everyone well. I am glad when other caregivers get help or have supportive family. Makes me feel good that someone is catching a break.
I get the feeling from some of your responses that maybe I shouldn't have written my post. I am sorry if it was bothersome or unclear. Thank you for your thoughts and I appreciate your time.
Best wishes.
Many times a first post is a bit confusing, as the person writing it is exhausted, worn out and at their wits end. As you stated you were interrupted multiple times, by your mother.
And you have clarified some of the things that were perhaps misread by other posters.
What I am reading loud and clear is the toll of care giving is weighing you down. You are suffering from anxiety, depression and social isolation. Those are huge burdens to carry when not care giving, when 24/7 care giving is added to the mix many of us see red flags.
When we suggest a nursing home or other facility, it is because that is what many here have had to do with their loved one (LO). They got to the point where looking after the LO at home was no longer feasible for any number of reasons.
Your mother may not have dementia, but severe anxiety is a mental health disorder. Is she receiving any treatment for it? Did she receive any treatment when she was depressed before in the Skilled Care? Woudl the 'good mother' who raised you have expected you to give up your life?
Please continue to post and understand that when a posted suggests moving Mum and Dad to a facility it is to provide you with a life too.
For now, what can you do in the next week or two? Tell your sisters you need a weekend off each month and they have to either come to look after you folks or pay for respite care.
You should be paid a wage for providing care, do Mum and Dad have any funds at all? Do they own their home? Have them set up a care giver contract as slavery was abolished in much of the world a long time ago. Hired Live in care givers get paid wages as well as room and board, time off etc.
So, you took the respite care or do you get paid?
Can your dad manage on his own if mom is in respite or are you then only caring for one parent?
Is it possible to have a conference call with all of your siblings and help them understand that room and board is not enough for 24/7/365 care. They have no idea how much work caregiving is or you wouldn't have to beg for some pocket cash.
You have obviously decided that you are in this for the long hall, so now to figure out how to survive this journey.
Is it possible to get Medicaid to pay someone else to come in weekly to give you a regular break?
Can any of your siblings or your parents afford to pay you a small amount weekly?
Here's the reality of your situation and it is hard. You have made this decision and if your siblings don't agree that mom and dad should stay home, they aren't going to support you. They don't agree that you have made the best choice or is it they haven't been around in so long they really don't know?
Please don't take questions as criticism, information is power and the more you provide the more help you will get. Also, writing stuff down makes us look at the reality of what is going on.
Hugs! You can make it through this,even though right now it probably doesn't feel like it.
I understand about not wanting the nursing home. I have not been in your shoes but have been in and out of caretaking for friends and family for many years. So my memories of NHs aren’t pleasant for the most part but I do know they aren’t all the same and some folks can manage better than others.
I’m concerned about what will happen if one of the three of you went down.
Do you have a back up plan? Do the sisters ever come to relieve you? Did they come when your dad was in the hospital?
I’m not big on hounding siblings or anyone but I doubt they realize the extent of your sacrifice.
So do you have DPOA for your parents? Do they have a will? Do they recognize that you are there for them and appreciate you?
I’m glad you have community Medicaid lined up. Hopefully it will come in soon. I know it’s not much but I also know that every little bit helps whether it’s money, exercise, proper diet, sleep. You have to have something in your life to fill you up. To lift you. If there is a church or other social group that you could attend where you can connect ... even if it’s for 15 or 30 min. do so. Meditation is awesome in how it can bring peace to your spirit.
Please do continue to post. You write anything you want to. You are young and you may not realize just how fast time can slip away. Be strict with yourself. Keep in shape mentally and physically. Do something to lift yourself if you are going to make it to see her through. You can’t just check your own life as if it doesn’t matter. That’s not how you honor your parents.
Hugs to you MissN. I’ll be looking for your posts.
Miss N,,
Why do you have to beg for money?
As I understand this, it would be a deal breaker if you have no funding to support yourself or your caregiving duties.