AARP Online Community and Discussion Forums - New to Support Groups by really need to talk.

k124964f · ‎01-18-2017

My mother was living in an assisted living in Alabama. We didn't see much of each other because I moved to NY. She called one day and said she didn't want to die alone and could she live with me and my kids. I thought that I carefully thought about all the pros and cons and made the right choice. We rented a bigger house and my family moved mom in. The first year was a tough adjustment for everyone and my mom sadly didn't really take on the "grandma" role as I had hoped. She stayed mostly in her room and didn't really want to do much with us. She was self sufficient in that she could tend to her personal needs and could handle the basics of getting herself prepared meals and watched tv. Years before she moved in she stopped communicating with her friends and did very little socializing. So it didn't surprise me that she wasn't eager to do much. It disturbed me but it was her choice. She did what she wanted and she was happy to be with us in her own way.

She turned 85 this year and we found out she had rectal cancer. What a scare but she got through the surgery and it had not spread. She opted for no chemo. The drs felt that she was not "terminal" even without the chemo. However, she refused to do anything for herself from that point on. She just stopped "living". I know she is depressed even though she says she is happy the way things are.

The way things are is the scary part. She says she wants to live but her idea of living is sleeping in the dark no tv no music no nothing for 23 hours a day and that is not an exaggeration. She will not eat, and no it isn't the cancer. She will not drink. She will not sit in a chair to keep up her strength. Every three weeks we wind up in the hospital and rehab because she becomes dehydrated and gets a UTI. She absolutely will not do what she needs to to stay healthy but tells everyone she is just fine and doesn't want to die. She is in no pain. She has no discomfort to her body... she just exists and she says that is fine with her. The problem is that my whole household gets disheveled and I have to take time off of work and away from the kids to deal with the hospital/rehab thing.

There is no dementia we have done all the testing. There is definitely depression but the medication doesn't seem to be doing anything to encourage her to get up and "live". She says that she is very happy and that she doesn't see any reason to eat or drink. She is just fine. The nurses tell her why she is mistaken. The drs tell her she should be up and about and enjoying life. She just won't participate. She says that she is very happy the way things are and that this is her idea of living.

I know it is her right and her body, but she (and this is where I am so guilt ridden) is really making a mess for me and my children. I don't mind changing her ostomy bags, her dirty sheets, making meals or caring for her at all BUT I mind that I am doing it because she is CHOOSING not to. It isn't that she can't it's that she won't.

I am frustrated because the assisted living she was in was paid for in Alabama by the church and she had a wonderful place. She can't afford what is here and can't go back there. I am out of options and really just at my wits end to be okay with just leaving her alone, as she asks me to do. Hospice is not an option because she is not terminal and has a fully resucitate health care proxy.

I just wonder if anyone has had this issue or similar. How do your cope? I absolutely could never stop offering her food and drink... I could never just leave her in filthy sheets. Yet this is what she repeatedly tells me she wants and then tells me "but I won't die". I don't want to die she says. I'll be fine just leave me alone. It is a frightening place and I feel very much alone and completely responsible to try and get her to stay alive. I am just a mess.

di9747 · ‎02-02-2017

First, let me say I know you are doing this from love, but still -- it gets hard, and I feel for you.

As for me, I've reached the wall re my husband tonight. He is 77 and has Parkinsons (for 9 years), just had a heart attack, some tricky stent surgery, and in the past has had other stent surgery, a TIA, a stomach perforation, and a hip replacement. The 2 weeks he was in the hospital (he's been out 1 week), were very difficult. He sundowns (has delerium) and ranges from in an alternative universe to crochety to physically abusive when it's going on. It was an extremely difficult 2 weeks with 1 day short of 2 weeks sundowning. Many of us in the family, along with nursing staff were punched or slapped. Hair was pulled. Security was called 3 times He ran away from nurses, pulling out his ivs, and the second time was missing for 30 minutes (they called other floors and were checking security cameras for him). He was found in another patients room, crouched on the floor. He was restrained and got out of restraints. I was there with him in ICU sleeping on a chair, on the telemetry floor in a cot with a sitter in the room and he was beyond verbally and physically abusive. I know it's not him, but it still was difficult. Ok, so he's home now. Still very confused. Again I know it's the Parkinsons and the sedation, but his hallucinations are more continual and he really doesn't know where he is (he's peed in the bedroom twice not realizing he isn't at a toilet). I've coped well, on beyond very little sleep. Why, I love him.

But today, we were talking (I think seriously, but who knows), and he tells me I'm not supportive of him. And he layers on more and more criticism. **bleep**? And I'm wondering can I handle this for another year, another 5 years, 10 years. 20 years? Who will I be at the end of that? I understand the for better or for worse part, but cleaning up urine, feces, taking abuse with no appreciation etc wasn't in my life plan.

JaneCares · ‎02-05-2017

@di9747 wrote:
First, let me say I know you are doing this from love, but still -- it gets hard, and I feel for you.

As for me, I've reached the wall re my husband tonight. He is 77 and has Parkinsons (for 9 years), just had a heart attack, some tricky stent surgery, and in the past has had other stent surgery, a TIA, a stomach perforation, and a hip replacement. The 2 weeks he was in the hospital (he's been out 1 week), were very difficult. He sundowns (has delerium) and ranges from in an alternative universe to crochety to physically abusive when it's going on. It was an extremely difficult 2 weeks with 1 day short of 2 weeks sundowning. Many of us in the family, along with nursing staff were punched or slapped. Hair was pulled. Security was called 3 times He ran away from nurses, pulling out his ivs, and the second time was missing for 30 minutes (they called other floors and were checking security cameras for him). He was found in another patients room, crouched on the floor. He was restrained and got out of restraints. I was there with him in ICU sleeping on a chair, on the telemetry floor in a cot with a sitter in the room and he was beyond verbally and physically abusive. I know it's not him, but it still was difficult. Ok, so he's home now. Still very confused. Again I know it's the Parkinsons and the sedation, but his hallucinations are more continual and he really doesn't know where he is (he's peed in the bedroom twice not realizing he isn't at a toilet). I've coped well, on beyond very little sleep. Why, I love him.

But today, we were talking (I think seriously, but who knows), and he tells me I'm not supportive of him. And he layers on more and more criticism. **bleep**? And I'm wondering can I handle this for another year, another 5 years, 10 years. 20 years? Who will I be at the end of that? I understand the for better or for worse part, but cleaning up urine, feces, taking abuse with no appreciation etc wasn't in my life plan.

I'm so so sorry. You know, when i was a geriatric care manager and had a combative abusive client, i would tell the spouse, you know, you don't have to be a martyr. In sickness and health does not mean you have to do everything. it does mean that, if you were the combative Parkinson's patient lashing out, you'd hope he would see that others helped to care for you, whether you were in the home with him, or in a facility. So, how about hiring a male home health aide? to hang out with him for hours each day? How about his neurologist? Have you told the doctor that your husband is a combative agitated pain in the tuckus?

tell us more.

please.

jane

DrBarryJJacobs · ‎02-05-2017

You have certainly hung in there with him through many tough times. The toughest time for most caregivers is when they are making the utmost sacrifices and receive only criticism in return. A kick in the teeth, really.

Your husband sounds like he urgently needs a medical evaluation by a neuropsychiatrist or neurologist to review his medications. His Parkinson's meds may be increasing his paranoia. At the same time, his nighttime confusion and agitation may make him a candidate for an atypical antipsychotic. More can probably be done medically to hellp manage him and make your life a little easier.

By the way, I doubt that he remembers how has treated you during his periods of agitation. He may have no way of really judging whether or not you've been supportive. You know and we know that you've been there for him again and again. He is fortunate that you love him. Good luck--Barry Jacobs, co-author of AARP Meditations for Caregivers

di9747 · ‎02-07-2017

This was helpful information and came just before it became clear that I needed to loop a neurologist (or a neuro psychiatrist, which was a term I'd never heard before but made total sense when I read it). We ended up in an ER two nights ago after one night where he was wandering around in th dark thinking he was in someone else's home and was going to be shot as an intruder. I woke up at 3am to the phone ringing -- he'd called 911 on one phone line and me on another. The next night I woke up at 1am to a crash, similar thing going on except that this time he'd fallen. He was babbling (in other words what he was saying was not English or any other language). His pupils were dilated and I wasn't sure at this point if he'd had a TIA or stroke (which he's had before) or if it was something odd with the meds. I drove him to the ER, where they checked too make sure he hadn't broken anything in the fall and did a CAT scan. Nothing organic going on, which was good. A compounding problem was a sudden resurgence of orthostatic hypotension -- may have caused the fall, certainly was a problem in the hospital. In any case, meds are tweaked, several are out of the picture for now and he's taking a low dose of Seroquel to help with the hallucinations and to sedate him a bit at night so we both can get a bit of sleep. Have neurologist followup scheduled. Again, thank you.

thecaregiver · ‎01-30-2017

My husband and I care for our 24 year old daughter with mental and physical challenges and we cared for his mom through cancer and dementia. I now lead small groups for caregivers online. Many people experience what is happening to you and your family. You are not alone!

The only person you can change in all of this is you. The more you push her to change, the more your mother will dig in and that will make you feel more guilty.

Things will change for you and your family when you can love and serve your mom in peace. Her situation is not your fault, it is her choice. Her choices don't have to make you nuts. They only make you nuts when you let them. Then your stress added to an already difficult situation is like pouring gasoline on a fire. Your mother holds all the power as long as you are letting her poor decisions upset you and your family. I'm not saying she will change her ways when you are no longer upset, but it will change the stress level for you and your family and break the perceived chains she has on you emotionally.

To help you switch from this guilt and pain to peace and love, may I recommend The Five Steps to Transformation? It's a free worksheet and video you can get from www.TheHeartoftheCaregiver.com that may help you and your family through this difficult time.

DrBarryJJacobs · ‎01-23-2017

Your mother's situation reminds me a little bit of a Herman Melville novella that I read in high school entitled "Bartelby the Scrivener" in which the main character refuses without explanation to do any work of any kind, regardless of the consequences. Your mother is politely refusing what is asked of her, regardless of the consequences for her and you.

I think that Susan Parker has already given you good advice for dealing with this situaiton: Allow home health aides to care for her hands-on needs. Focus on your own life and needs. In addition, I would suggest that you have a frank conversation with your mother in which you let her know explicitly that her choices are disrupting your family. You've done your part for her. In failing to take care of her own health, she is not doing her part for you and your family. Will she care? I'm not sure. She seems entitled to just let herself deteriorate on her own terms. I'm not sure she is entitled to do that under your roof and on your watch and at cost to you and your family. Should she be allowed to use you in this way? I don't think so but you and she will have to decide that.

psydoc · ‎01-19-2017

My heart goes out to you. I have a child with autism, who is now in a group home, and so I went through something similar. I am also a Psychologist, so I have significant expertise in mental health and other related areas.

First, I would see if different meds can help her. Trying to get her to exercise is not an option, given that she would probably be unmotivated and uncooperative.

As for your own well-being, I would encourage you to try to get some in-home support services. All states have waiver monies, which pay for eldercare in the home. We had a CNA and several therapy assistants, who came in to work with my son over the years. Some did minor cleaning, if it was related to his care. Having someone come in to work with your mother would relieve you of changing some of her sheets, etc.

Finally, I would encourage you to get out and about and keep your own social network going. You cannot live your mother's life. You cannot make her decisions. She will not be the grandmother you had hoped she would be. In a way, she is like an adolescent now. She lives in your home but has certain rights and privileges, such as deciding how much to participate in the family. I'm sure you have friends, whose teens refuse to go on family outings and stay in their rooms for long periods. This is part of how they show their independence.

We cannot control others. We cannot make them who we want them to be. The best we can do is carve out a space for them in our lives and give them opportunities. If they do not take those opportunities, we may be disappointed. I have worked with many families, who have children with disabilities, and we all experience these feelings. In order to survive, we have to find the things we can control that make us happy and defend our own right to these things.

When my son lived with us, I managed to have a life by working part time, keeping my friendships active, going to church, and working out at the gym. I kept a regular schedule most days. I found that when I focussed on my own goals and interests my emotional state was better.

I hope these suggestions help a little.

Susan Parker