Seeking wise advise that will help me survive.

Follow
Share

My mother is 82 years old. I was told by her primary care doctor, that she is in end state. Im here primary care taker along with my father who is old as well so I do most of the chores to make both of there lives comfortable and live with dignity. My mother has mutiple serious health issue, chronic anemis, congestive health failure, renal failure and currently receiving dialysis 3 times a week. She has a gastric bleed that is caused by a malformation in her intestins that cause her to bleed out through her rectum. he has had more than many blood tranfustions. She is in and out of the hospital because of the extensive treatment she needs during the constant medical crisis. I have walked this journey with my mom for 2 years watching her decline as each day goes by. The sad part about this whole story is that I have 4 healthy siblings that have left me alone to tend for my mother, but I'm actually caring for both my mom and dad. He has a heart condition and he could not fend for himself if he had to care for my mom alone. I had to quite my job, file bancruptcy so that I can be there for her in her because I see it in her eyes and body that she is withering away. I talked to my sibling to tell them that I need help caring for mom and they give me all kinds of excuses and some even said that I exagurated her condition. I was floored. I cant believe we are related by the same mom and dad.My older sister to me "put mom in a hospice and go on with my life". I know my mother would take her last breathe if I did that. But it is her decision and I explained it to her and she refused. She has that right! Now her cardiologist want to place a pace maker in her and Im waiting for the cardiologist to tell me when, then I will discuss it with my mom and she can make her dignified decision. I am so tired and depleted dealing with this alone. Sometimes I w. ant to run away but that is not an option. My mother cared my siblings and I till we moved on as adults. I could never turn my back on my mother. I have lost sleep have to take anxiety medications and have lost approx. 15 pounds I cant afford to loose because my perfect weight for my 5-2 hieght is 115lbs. I have shared my emotional and physical decline to my siblings and the fact that my mother craves there presence and my words fall on death ears. God forgive them. There is no excuse under the sun for this behavior. My mother needs round the clock help and I have to lease out my home and displace myself to give my mother the attention she needs. I try to stay busy readying and motivating myself spiritually because I cant find any other avenues that help. My father ask me to do something I was shocked to hear coming from his mouth. He said if your mom dies anytime time soon, he want to bury her right away and not say anything to my siblings, He will move to Puerto Rico and when they decide to call, I will give them the news that mama had passed weeks ago. And further mention to them since you all would call every 3 or 4 weeks and visit once in a blue moon dad felt it was best this way. My siblings all live 30, 50 and one of them 5 minutes away. They dont have little children to care for, one brother is retired from the Sheriff, the other works as a sheriff, my sister works Mon thru Friday weekends off and the other sister works parttime and lives 5 minutes away. None of them helped me when I said lets rotate caring for mom so I ma rest. They all have the weekends off. That was a joke for them. As I said, I have sought out Gods spiritual help because I feel so alone in this process. I cry almost every day because I feel overwhelmed. My mother ask that I go to the mortuary and get her funeral prearranged and I know that is a good thing to do since I am alone in this journey. All I desire is to love my mother and to assure her I have not abandon her whens she needed me the most. I dont want to caring guilt in my heart as my siblings will. This is being human and being compassionate. I live thru those words in everything I do in live. I have no regrets and I would do it all again for my mom. Your feedback will help me when the time comes. Thank you for allowing me to share and I look forward to any and all positive thought to help me recover my sanity. Thank you

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
4

Comments

Show:
Ivette, this is picking out just a detail, but it happens to push one of my hot buttons. Your mother is in end stage and a cardiologist wants to put in a pacemaker??!! What the .... ?? This is an operation that takes a few hours. Is she up for that? Do her other doctors think that is a good idea? Yes, pacemakers are very useful and contribute to quality of life. My husband had one for more than 20 years. It certainly makes sense for someone who will benefit for many years. But how long, realistically, will your mother benefit from it? Does the cardiologist know she is considered by other doctors to be at end stage? There have been other threads here discussing the topic of extraordinary measures or meaningless tests for persons near the end of their lives. A lot of us just get mad at doctors who think they can make everyone live forever, or who apparently want the income from doing another procedure, whether it makes sense for the patient or not.

Another small detail ... I wonder if your family has an inaccurate view of hospice. You do not (cannot) put someone in hospice and get on with your life. You are still the primary caregiver. You just have some highly trained and compassionate help several times a week and always available by phone. My husband was on hospice for 5 weeks, in our home. The hospice organization got him a hospital bed immediately (the Medicare process was dragging that out). A nurse came twice a week and saw things that could be improved for his comfort that I didn't even think of. She showed me how to prevent and treat bed sores. She brought in a patch that helped dry up the secretions in his mouth that he was having such a hard time swallowing. She put in a catheter that greatly relieved discomfort. It was awesome to have her help. In no way did she substitute for me as a caregiver. She supported me. Some respite time was an option, but I already had that covered in other ways, and knowing my husband's days were numbered I wanted to spend a lot of him with him. A hospice social worker also visited every other week. Also, it is true that if you call in hospice your mother will probably take her last breath on hospice, but that is because you call in hospice when your loved one is likely to take his or her last breath in the next 6 months or so. They will die whether hospice is there or not. There is a study quoted in one of the Aging Care articles that persons on hospice tend to live slightly longer than persons of the same condition who are not on hospice. Hospice does not hasten dying. It improves the comfort level during the process. Bringing hospice in is in NO way "abandoning" the loved one. I think your sister may have meant that when she suggested it, but she is simply wrong.

Take care of yourself. You are doing extraordinary things.
(3)
Report

Yep .. #1 - you have to begin caring for yourself. The airline's analogy of, if you can't breathe, you can't help, so wear your own mask first, truly applies here. If you live in a large enough community, do some searches for elder care, hospice help, caregiver aid. If your church doesn't have an outreach program, check with some other local churches. One of the most helpful things you can have is respite help: where someone comes in and relieves you so that you can take a break. You absolutely need it. We all do. GET OUT OF THE HOUSE alone!!

As for the family. I'm coming down somewhere in the middle. The first responder is right: they won't come around, so let it go. The resentment will only make it worse. As for notifying them .. I say, rise above them and be a loving and responsible ~daughter~ (not sibling .. obviously they don't really care). Do what you do out of love for your mom.
(1)
Report

Ivette I am so sorry you are going through such a nightmare. It is not easy for sure and we all know how bad and confusing things can leave us. I personally do not see it as inappropriate not to tell the siblings when mother passes. Rather it seems most inappropriate, if we must label it, for them not to help you or your parents. If they are interested and care where are they? They must know that you are going through hell and to me this is the time for letting go. Detach with love in all areas, you must preserve your spirit and sanity. Don't waste anymore energy trying to figure out "why they don't care." Do what you can, respect your father and mother's wishes and take good care of number One, you!
(0)
Report

Ivette, I admire you for caring for both of your parents. This has been a huge undertaking for you to choose to do all alone. It's obviously taken its toll on you. I don't think you've been taking care of YOU. You are very depressed and exhausted. You won't be able to go on if you do not get help. Make an appt with your doctor the sooner the better. Next thing, can you get some outside help with your parents? I don't see in your post that you have any help whatsoever.
Ok now for your siblings...it ain't gonna happen. They've said NO so you have to accept it. You can't make them want to help or physically or economically help. You can't control them. Right or wrong, they aren't going to help you. So this is solely your job, sorry to say.
No matter what your siblings have done or haven't done, I think it's inappropriate to keep it from them when either parent passes. My mom died 2 years ago and my only sibling has yet to tell me. I had to find out from my fathers sister, plus seeing Mom's grave next to my dad's. I was the one who took care of both parents with no help from sis. My mom got mad at me and disowned me so I'm sure she told sis not to tell me when she died. But mom was dead and gone so my sis could've told me. You may be taking care of your parents but they still are parents to your sibs. As one who has been there, you may regret wielding that kind of control over your siblings. I believe a hurt on you does you no good to inflect it on others.
These are just my humble views. I truly hope you can move forward out of this fog but you'll have to work it. You've already shown love for your parents, now it's time for you to show some love to yourself. I wish you the best.
(1)
Report

This discussion has been closed for comment. Start a New Discussion.
Related
Questions