Hello fellow Caregivers. New to this forum. I thought I would try this route and see if I can get some advice. Here is my story: I have a 85 yr old mother who has lived with me for 12 years now, she has dementia. I am starting to really resent her now and I am trying to deal with it. These hospitalizations are killing me. My family, sister mostly, doesn't help at all and my brother really can't take time from work. I am stuck. My mother doesn't appreciate anything. I am expected to cook, clean, take her to appts, get medications... everything. I really need to get away. Plus, to make matters even worse, I was just diagnosed with cervical cancer and now I have to go in for surgery, not sure if this will be easy to do while I recover. Any advice would be appreciated. Just overwhelmed and yes maybe I feel sorry for myself... Trying to stay strong. It's hard.
Just as you walked into this yourself, you must extricate yourself. That takes honesty and it will result in rage and tears. But as you now see, for the long haul this isn't sustainable, and it could even affect your own health.
I am a cancer survivor as well, and I am so sorry for this diagnosis, but you should do very well with treatment. You have now to sit Mom down and tell her that living together isn't going to work for you. Don't give reasons; they lead to "argument" that goes nowhere. It simply isn't working, and placement in ALF if likely the best answer if there is any dementia involved. You may need to hire in help for the time during your recovery; then you will begin to find suitable housing for your mother.
With "living together" doesn't work for one member of the family then it is out, and that needs to be made clear in the beginning. One must enter with all eyes open and all cards on the table. You are a bit behind in all that, and getting up to speed won't be easy or a happy time, but remember, in a long life there have been many times when things didn't work out well for your mom, when she had to cry and then deal with the real situation.
I welcome you and wish the circumstances were better. I am sorry for all the stress and all the poop hitting the fan at one time, but you can work this out with honesty, and move forward with your life. The trajectory for caregiving is always downward; this won't get better. As to family, you don't change others. Let that off your table. You can/should ASK, and you should preface asking with your diagnosis and your need for family help at this time. If the answer is "no" then you will fully understand that your family isn't there for you. You are on your own. Don't waste angst and energy trying to change the unfixable, and fix what you can. Serenity prayer time; this atheist uses it a lot!
Wishing best of luck and hoping to hear from you in future.
That means a few things.
1. Mom goes to Respite Stay while you have surgery and for a time after so you can recover. And if you will have ongoing treatments mom can either remain in MC until you are ready to care for her again (If you want to..more on that later)
2. If there are Adult Day Programs where you are get mom involved in one. They typically pick up in the morning and return the participant home in the late afternoon. This is about an 8 hour break for BOTH of you.
3. As difficult as it is wrap your head around NOT getting ANY help from family, siblings. That way if you do get a break and one steps in you can be pleasantly surprised.
4. Another think to keep in mind is.. mom can not appreciate what you are doing, she has lost a very important emotion...empathy. There is no spontaneity, so she will not just help with making dinner. You can give her a task to do, peel the potatoes, set the table, stir the pot but unless you tell her what to do she will not just do it.
5. Mom has dementia. Taking care of her will get more difficult, she may get more difficult. You need to have a talk with yourself as to what you can and can not do, what you will or will not do and what is safe for mom and safe for you,.
Does mom have the assets for Memory Care? If so it might be time to think about that.
there is a fairly new program through Medicare that might be able to help a bit. It is called GUIDE. Please look into it. It will cover about $2500 of caregiving each year. (The person has to have been diagnosed with dementia and they can NOT be on Hospice.)
You also need help. Caregivers can come in and help you care for her (if she is not in a Day program) this gives you a break and gets her used to others helping her. I know having "strangers" in the house is not easy for anyone but it can save you mentally, emotionally, physically.
this horrible mixed emotions troubling you….
you have been the care giver so long, that someone
in your family needs to CARE enough to help you.
Have you tried to have a family meeting about this??
do your siblings understand what REAL burnout does to
to a person?
Do they care???
I will not share my troubles with you at this point in time,
except to say, YOU DO WHAT YOU NEED TO DO
TO HELP YOURSELF GET THROUGH THIS.
Even if it just means sharing your feelings with us.
dollbaby1966
Anyone with cancer has to put themselves first . Take care of yourself .
You can tell your siblings your plan, but if they don't like it but don't help you find a solution then their opinions don't matter at all -- do what works best for you. Caregiving has to happen on the caregiver's terms, no matter what.
You need to find placement for your mother.
Has she been paying you rent and for your caregiving?
You need to start taking care of your own health.
Contact APS and your siblings and let them know that you can no longer care for your mother and have a health issue that needs immediate care and can't wait. Let them know that you will be going in for surgery. There is no way that you can handle your mom any longer.
Get your mother placed in a care facility. She pays for her care through Medicaid if she doesn't have money saved.
Also, don't have any expectations about family helping. This is just a resentment waiting to happen. Family will come up with all types of excuses why they can't help. I have a family and need to work is one.
The progression of dementia will only get worse, and she will eventually require a care facility anyway.
You are at the right place for support.