My mother is 55, congestive heart failure, pace maker/defibulator, diabetes, copd, the list goes on, along with depressive disorder, factitious disorder (she hits or picks at a skin graft she had 3 years ago creating a constant wound) and borderline personality disorder. She has three main doctors, two are MD's and a Psychiatrist. She hit herself causing an infection which landed her back in the hospital in late August, after she was released I was able to get her admitted to a nursing home for wound care/med management because her home health care agency dropped her due to liability issues, (we've been through several) and cannot find another. She has been living with me and my 16 year old son, but I am exhausted working full time and my son is frustrated. She has made accusations of people hitting her leg and has generally become manipulative. She is in a wheelchair, on oxygen, but is still able to get around (especially if she doesn't realize anyone is around). All three doctors agree that she needs to be in some sort of supervised setting with nursing skills. All three will not give me a definite answer on how much skilled nursing she needs and we live in a rural area so our choices are limited. The nursing home is too restrictive, but the living centers (few) might not give enough supervision. The social worker has been no help, and the family expects me to just take care of it, many feel that due to her age of 55 that I should just bring her home and let things go on the way they have been. I can't do that. So, who do you turn to when you are exhausted, work full time, single parent, caregiver, money is tight, no family backup, a not quite senior mother who is in denial, an no idea where to start.......
You love your Mom and can see that her needs are met in other ways. You do have options and most importantly you will never again have your son at age 16 where you can make a great impact on his change into manhood.
Do what you need to do. Disregard family expectations. Your mother is very sick. That is not your fault. There are limited choices of care for her in your immediate area. That is not your fault. You cannot meet her extensive needs and also take care of your son and yourself. That is not your fault. You have tried repeatedly to bring the care your mother needs and home care agencies cannot handle it. That is not your fault. Your home is not a supervised setting with nursing skills, in spite of your efforts to make it such.
Sounds to me like she should stay where she is. If she improves in that setting, and other options become available in your area, such as an elder foster home, consider a change at that time. If nothing improves, she is in a safe setting.
You will probably get answers that say you have a duty to care for her, she cared for you, she's the only mother you have, etc. I agree. You need to take responsibility for her care, which you are doing. She deserves your help, which you are giving her. But her specific medical/psychiatric needs are beyond your personal ability to provide for, so you need to see to it that they are met in a professional setting.
You will not be abandoning her. Visit frequently. Try to encourage those family members who have certain expectations for her to visit, too. Become her advocate and make sure she is getting the best care available. That is not a minor task, but it is one you can learn to do well.
Yes I'll agree that you probably want to seek legal advise, for you with your mom's age it's not so much elder care but more for an attorney who is familiar with guardianship or conservatorship in your state.
If push comes to shove and you seem not to be getting anywhere in finding, qualifying for funds for her care and she really doesn't have assets and you simply can't do more, you just can't sign financially for her care then she could become a "ward of the state". It's not that uncommon for those with significant mental illness that are young to become a ward of the state as it can just be too overwhelming for the family. This is a big deal legally with a court hearing with medical & family input but sometimes that's what needed in order for them to get the care they need. You will still be involved with her life but the responsibility for her care and paying for it become the state's. Good luck and enjoy those fall school football nights!
You may not be able to force your mother into an ALF, but you can refuse to let her live with you. Then what is she going to do? With all of her impairments you may be able to invoke the POA and require the move. You do need a lawyer, and that is a legitimate use of your mother's money.
Thanks for keeping us updated.
I feel very sorry for your son having to have his grandmother with borderline personality disorder living in your house since he was three. Seriously, he might need a therapist himself after that ordeal. Poor dude, he probably feels like he's been abandoned. I also feel sorry for your being trapped by her and it sounds like she made you the chosen one with fear, obligation and guilt which blinded you for a while. People who live in close proximity with someone who has BPD very often catch BPD fleas and thus need therapy to set them free.
How in the world have you survived a borderline mother living in your house for 13 years? How did your dad manage to stay married to her for most people with BPD have unstable marriages that don't last or have a slave for a spouse? Have you read understanding the borderline mother or surviving the borderline mother or stop walking on eggshells? Those a three great books for anyone with a mother who has BPD (borderline personality disorder).
Frankly, I can understand why your brother does not want to deal with her, but still he should help you deal with her. Mental health professionals do not like dealing with persons who have borderline personality disorder either. Borderlines need although they don't like restrictive boundaries for they own safety and the well being of others. So, I think the nursing home is a good idea. She might however at some point need the extreme care of a psychiatric hospital.
I wish you well as you get your life back and your son's life back as well as your relationship with him back.
Second, use the facility where she is currently at to determine what level of care she'll be needing. They may have ideas as to which place is best for her situation. My mother was in need of simple assisted living; med care, help with housekeeping, etc, but there were no openings for those who are on medicaid, just for the self-pay. And Ma didn't want to give up her independence. I stood firm, said she was not going to live with me, that they had to think of her as living alone. It took a year to get docs to listen, and four or five visits to the hospital ER, only to have them send her back home alone with Home Health, even though she was clearly in a state of septic dementia. I had to fight with the docs just to convince them that I was not capable of helping her, having an invalid husband at home to care for. She did live alone, which is different from your situation, but I'll get to that point in a minute. Finally, she was placed in an NH after a hospitalization, mainly because I called 911 to have her admitted to the hospital, and started making noises about litigation if they sent her home in the same condition as last time.
The new doc (I fired the old one) found an abscessed tooth that was causing the sepsis, and that cleared up mostly. However, the NH said she did need some kind of assisted living. Once again, where to place her? No openings, etc. So, we worked on waiting it out while she remained in the NH.
It's been about two years now, and still there are no openings anywhere within a hundred mile radius, and I'm unwilling to go further to place her. So, she remains in the NH, which she alternately hates and loves. mostly hates. lol
So, my thought is that you might want to state in no uncertain terms that, if they release her from the NH that she will have to find alternate living arrangements, as you are not equipped to handle her medical needs anymore at home. She is, in essence, living by herself. You may feel this is abandonment, but, it is not. You are truly incapable of handling all the emotional and medical needs of your mother. Your son is at risk.
You may have to wait until there is sufficient space in an assisted living, or, as my mother has done, let her acclimate to the facility she's in now. She, of course, will hate it -- will call you names -- will push every guilt button you have, but this is because she is emotionally unstable herself. Borderline is a serious diagnosis.
I would also recommend counciling for both you and your son. If the first one doesn't help much, then find another one who does. I've gone through five in the last few years, and have finally found one I can respect, who respects me, and doesn't need to pull out a book on depression (which I already read) and quote at me. In fact, I have an appointment with her this afternoon, and am looking forward to it.
now, to let you know, my ma is not exactly easy to get along with. she has no friends because she feels more intelligent than everyone else, and the few friends she had she drove away with sarcastic comments. my own children will not have much to do with her, unless I rope them into going with me to the NH for the monthly karaoke. I visit her once a week, mostly, although I missed last week due to illness of my own, and, of course, she thinks I got sick just so I didn't have to go see her. guilt buttons don't work on me much anymore, but I still do get a little twinge over missing a visit I'd agreed to make.
So, I suppose I just want to encourage you to stand firm, and do not take her back into the home. Your only true responsibility toward her is to see that she is placed in a safe environment, and it does not have to be your own home. You are not a 'bad daughter'. You are a good daughter who has given her mother 13 years of non-stop help, 24-7.
Good luck, and my prayers are with you.
Lisa
As for my kids, I tell them it's all right to be angry, but then I reinforce that she's an old lady, scared of dying, and what she really deserves of them is compassion. However, I always validate their reasons for anger. I am Mom, and I will always kiss the boo-boos, no matter how old they get. lol A hug tends to go a long way, even with a boy who is too old to want his Ma hugging him. ;)
Now, for the leg thing. Yeah, my Ma has been falling a lot lately. She's been in and out of the ER, and I stopped going with her. I think she's doing some of this on purpose to get my attention. The NH should be calling you each time she has an issue like that, and especially if they send her to hosp. Heck, they call me if she sneezes, it seems like. lol but I'm glad they do. That way, I know when she's exaggerating the situation.
What I believe will happen with the AL place, is that, if her injury needs more care than they can give, she will remain in the NH until well enough. They won't refuse to take her unless she permanently needs more care than they can give, and then the best solution would be to leave her where she is, IMO. I don't know about it being that obvious that she needs to get out of the NH. I think she'd probably have the same injury issues no matter where she was, and right now, she's got the care she needs. The only thing I'd do is get after them to notify you immediately if she injures herself or needs to go to hosp.
When my Ma was first put permanently into the NH, I decided with her psychologist that I wouldn't go see her for a week or three. I took two weeks off from her, and that helped her to adjust to the NH better. It seems to me that your ma is adjusting now. If her spirits are a little better each day, that's a good sign. She'll backslide, of course, but it won't last as long each time.
As for the brother and his POA: if he doesn't respond, then you need to do it anyway. Does everything require his additional signature, or can it be either one? It just seems to me that you need to tell him what needs to be done for your ma, and, if he has any issues with how you're doing it, he needs to give you an alternative. And, if he's not willing to discuss this over the phone or in person, you just won't notify him of your decisions. Don't let him pull that passive-aggressive crap. It's childish. Be assertive, yourself, and tell him he either needs to help or get out of your way. If the trust you're setting up is from her money, then he needs to be told it's her money, not his, and it is to be used for her care. If you need to get a lawyer in order to get things done, get one for her, and let the lawyer deal with brother dear.
Just to let you know, my Ma has so far suffered a concussion, and a cracked tailbone from her falls. But, when I stopped getting hyper about it, meeting her at the hosp, etc, her falls have essentially stopped now. If she hurts herself now, I merely acknowledge it, and tell her to be more careful. Ask for help if she needs to, and move slower when she gets out of her chair. I do not baby her. She hates it, too. lol calls me insensitive. Yup. That's me, who spent hours crying over the phone at anyone who could help the situation when she was living alone. So insensitive and uncaring. ;)
Keep up the good fight. It's worth it for the peace of mind when things settle down.
Lisa
It's going to take a miracle. Until then, "care-front" her without coming across like a Marine Corps drill instructor. You say she's manipulative and gets around when no one is looking, so she's not completely helpless and the brain seems to be working adequately despite chronic ailments. In a nutshell, if decisions that fundamentally impact her life are to be made it's only fitting she be in on them -- and share some of the responsibility.
Consult with her doctors to see what kind of activities -- and chores -- she can take part in. Becoming useful again might get her out of the apparent helplessness so characteristic of people in denial.
Good luck my friend.
-- Ed
I couldn't undo it. So, this is my first post. I have been reading for two days, it has really helped my own depression and lonliness.
The woman who started this thread... just wow. Her situation makes mine look like a walk in the park:/
my goodness, your mother is a year younger than me! I know it is easy for me to say, but I feel the natural order of things is to put your son first. bless his heart. it sounds like he is dealing with this as well as he can. and you? let me reiterate. I just can't imagine how you do it. I wish I could help. I haven't had time to explore this site, but perhaps there is a way for people to get in touch depending on their location. I just don't know.