Sliding faster

RanchersWife

Wow. The last two weeks have seen a huge decline in my mil. We now have almost all of the behaviors. Old ones (that were manageable) forgetfulness, paranoia, balance issues, aphasia, confusion). Now we have the new ones: anxiety, sundowning, wandering, restlessness,  violence, no safety awareness, weight loss, babbling, banging on things, constipation. It’s not a uti. Hospice says antipsychotics are the next step but that they will make her weird. I can’t do weird. 

I knew this was probably coming but was not prepared for the effect it has had on me. I spend days with her and my husband spends nights. The hardest thing is when she stands in front of me and stares at me. She can no longer talk. Remember that psych trick kids used to play on each other in elementary school...where they would stare at a person until they became uncomfortable? That’s what she’s doing to me. The source of my stress is that nothing I do makes sense to her and when she’s not staring at me at me with a deadpan expression she is looking at me like “what the hell is wrong with you?” It’s getting inside my head. I don’t know how to fix it in my head. Then after a long day with my mil, my mom called to tell me some exciting news in her community. (She’s just been diagnosed with some form of dementia) but she didn’t want to chat and talk and got off the phone abruptly and dismissively. It was so hard. In the middle of this very hard thing I’m doing with mil, I’m no longer able to talk to my mom about it (because that would be cruel) and I’m seeing her dementia already change yo her. Most people wouldn’t even understand how her behavior on the phone was dementia or be so devastated by it. They might be mildly put out or irritated. I sobbed and then washed the front door until it was very clean. 

We have a sweet girl coming part time in the evenings starting next week. I’m going to offer her as many hours as she wants and a raise. She’s only worked 6 hours so far but things have changed since we hired her. (She had a week off for a preplanned vacation trip) 

Ive also started counting how many times my husband, bath aid, hospice nurse, friend asks me if I’m ok. And there’s a weight in my chest that feels like a cat is sitting on it. My children are doing amazing things right now! One is starting grad school in August, one is starting college, one is learning to drive, one is going on a trip to Florida to visit cousins and learn to scuba dive. My baby is still my baby for a little longer. He’s 8. 

I really want to see this job through and not place her because we feel the change would kill her. We’ve been taking care of her for 3 and a half years. I just need to fix how I think about things and be stronger, I guess. Any psych tricks to counteract the staring psych trick? Other than yelling, “Quit staring at me!!!”  I’m glad  for the distractions my kids give me. 

M1

RW I disagree that the antipsychotics would "make her weird." What shes doing now is weird. And as you say its getting to you. 

You won't know unless you try. You can always discontinue if you don't think it helps. But there are many success stories here with Seroquel and similar.

Hang in there....

harshedbuzz

RanchersWife wrote:

Wow. The last two weeks have seen a huge decline in my mil. We now have almost all of the behaviors. Old ones (that were manageable) forgetfulness, paranoia, balance issues, aphasia, confusion). Now we have the new ones: anxiety, sundowning, wandering, restlessness,  violence, no safety awareness, weight loss, babbling, banging on things, constipation. It’s not a uti. Hospice says antipsychotics are the next step but that they will make her weird. I can’t do weird. 

RW-

So this behavior now? How would you describe that? 

I personally wouldn't use weird as this is the result of a diseased brain, but they're called antipsychotics, not pro-psychotics for a reason.

I kind of feel like it was inappropriate for the hospice person to leave their lane, so to speak, and offer an opinion on the subject.

An off-label low dose antipsychotic added to dad's meds by a geriatric psychiatrist (the specialist in such medications) made it possible for us to dampen his anxiety down to a level where verbal aggression didn't give way to violent behavior which gave him an extra 14 months in his own home. 

I do know what you mean about the stare. For me at was the uncomprehending eyes that reminded me today's catch at the local fishmonger. As the disease progressed, his physical appearance changed dramatically in ways that were difficult to articulate.

HB

M1

I agree HB, that doesn't seem like a helpful comment from the Hospice person at all.....

RanchersWife

I don’t have a problem with the nurse phrasing it like that. I think the nurse knows her, us and what we are willing to do medication wise right now. I think we have to accept that no med is going to fix this and make her go back to how she was last month. We might be able to make some things more manageable. Right now the unmanageable part is in my brain. We just started giving her Celexa. That’s a lightweight drug. It seems to be helping in some ways. I think things are changing rapidly and we will have a hard time catching up if we try to chase too hard and make too many changes. We just need to get her in a good 24/7 care routine. She hasn’t needed it before because I could watch her from my house on the cameras and go over there every hour. Now she won’t be left alone for more than the time it takes me to fetch something from my house or make a phone call outside.

RanchersWife

The nurse also said to let her know when we are ready to give it. She’s not saying it’s not warranted. She’s just not sure we are ready to give it to her because of how quickly things are changing.

abc123

Ranchers Wife, I am sorry to hear about MIL progressing quickly and about your mom being diagnosed. My mom has started to stare off into space but not at us, not yet. She is pitiful to see. Her face hangs, expressionless. She falls almost daily. 

I've always admired you. You are a remarkable woman, wife, mother, daughter and DIL. I am very happy that good things are happening for your boys. Do they rodeo? I am envious of your ranch life. I regret not leaving south Louisiana when I was 18. Too late now. 

I hope MIL will find some relief with the medication if and when its given. You are in my prayers and my heart. 

dayn2nite2

While you think that placing her might kill her, I can tell you that NOT placing her or treating her with suggested medication might kill YOU.  And then where would your spouse and children be?

That's why you see placement suggested so often.  Unless you basically build a 1-bed nursing home in your house and staff it 24/7, 2 people cannot give the care needed, even if you have the ability to hire someone to take over some of the time and have an agency like hospice to help.

I know in the past there's been complaints that people are so quick to suggest placement, but honestly when you have 2 people providing 90% of the care, one of you will be injured, get sick with something serious, and sometimes even die during this long, long journey.

And sometimes, even if the person placed passes away sooner, that is a gift for them too.  Imagine while she is staring at you she's trying to figure out where she is, who you are, who she is, and what she should do.  Imagine you can't talk and can't communicate your utter confusion and distress.  That's her life every day.

Cynbar

I know everyone has to make their own decisions, but I just want to chime in on our experience with anti-psychotics. They made a world of difference for my DH, in fact I'm sure they have enabled me to keep him at home up to this point. He was having difficulty with agitation, anxiety, delusions and hallucinations ---- it was exhausting for both of us. The his doctor started him on Zyprexa , and it reduced all those symptoms to a manageable level. It certainly didn't make him weird or even lethargic. I'm just sorry we didn't start it sooner.

RanchersWife

ABC, 

Thank you for the kind words and prayers. 

We aren’t the rodeo type. I consider those people slightly crazy. Lol! Also, rodeo takes a lot of time and money. It’s much easier to buy a 4-wheeler or side-by-side to get around. We don’t have horses. Well, we have one we feed carrots to every now and then. My husband was raised on the ranch but was never the cowboy type. He’s the hard worker type. We both have advanced degrees but came home 16 years ago. It’s been a good life. Sometimes I compare it to the track we were on...engineer at GM and adjunct math teacher at a community college in Michigan. Oh well, not our life anymore. I don’t regret raising my boys with their grandparents. The joy my kids gave them over the years is precious. As I age, I keep finding ways my mil was wise. I’m lucky to have known her. 

Day,

I think we will get where we are headed...meds, placement,...It’s just hard. I’m tired of being on poop watch. It’s stressful if you catch it and stressful if you don’t. I would be the richest person in the world if I could solve the dementia poop problems. I have no idea how a facility could manage this issue. 

Rescue mom

Just regarding your last line about how a facility handles it….they have aides, cleaning staff,  nurses, staff, etc. who do that. They have tools and experience., and there’s several of them involved.

But probably the biggest thing is, that’s what they do—it’s their job, and for “only” eight hours a day and some days off. They don’t have to deal with all the other things you do; they are nor running a household 24/7 like you are. As I know you’ve heard here before, caregiving kills a lot of people.

Stuck in the middle

My mother wouldn't want me to live as you and your husband are living.  Her plan was to work until she couldn't, live in her own house until she was carried out, and then go to a Medicaid NH until she was ready to sleep next to my father.  And that's what she did.  

You are under an enormous amount of stress, and it is unrelenting.  I am quite familiar with the chest pressure you describe.  It is bad for my health when I experience it, and I think it is not good for you either.  I suggest the next time someone asks if you are OK, you give them an honest answer.

Until you are ready to place your MIL, think of her as a cat.  She stares, doesn't intelligibly speak, makes messes.  If you can accept her as a cat, you won't expect human behavior from her and the stress will lessen.  She isn't trying to stress you like a mean girl, she is watching you because you are a moving object and the most interesting thing in the room.  She is expressionless because she has forgotten expressions (expressions are learned, which is why people who are blind from birth are expressionless).  

I guess this sounds like I am suggesting psychosis as a coping mechanism, but I think of it as a fantasy exercise.  Remember Walter Mitty, who could turn a shopping trip with his bossy wife into an adventure by reframing it in his head?  He knew he was driving a car, not a PT boat, so he wasn't really crazy.

Jane Smith

RW,

I’m sorry to hear the update on your MIL. That is just hard all around. 

I am so familiar with the staring behavior you mentioned and wish I had some great advice for you. It always creeped me the heck out also and all I was ever able to do was to try to distract, which did not usually work for long. I made a lot of unnecessary trips to the bathroom, to be honest. 

I really hear you that you are concerned that placing her, and all that the change and move would entail, could be detrimental for her. You’re not wrong. It could be. 

But what I don’t hear you saying is that what is actually going to kill her (barring some type of accident or sudden illness or similar), is the dementia. Not what you do or do not do.  The dementia is killing her, not you. You are not the bad guy here. 

I also cannot emphasize enough that while I don’t have a crystal ball, it’s more probable that you continuing as you have been is going to kill you-maybe not today, maybe not in a spectacular way, but it will negatively impact your physical, mental, spiritual, and emotional health.  She could live a long time in a facility or your home or somewhere else. Or maybe not. But if you keep doing what you’re doing, you will pay the price. 

This awful terminal disease will take her life. Don’t let it take yours, or anyone else’s, as well.

It’s only been about a month since my mother died.  In addition to the health problems that I knew about and had been neglecting, I have been diagnosed with at least two more illnesses, one of them a Very Big Deal. My physicians all state categorically that the stress from my mother’s illness and caregiving (and I never was a hands on/live in caregiver), has definitely made my medical problems worse. I am looking at a shortened life span and some serious impairment for what remains.  Please don’t let this happen to you. ANY of you. 

Stuck in the middle

My health improved after my mother died.  I was still caring for my wife at home and for my son in an institution, but it was one less thing to fit in.  If I had realized how it was affecting me, I would have retired from my job earlier.

ButterflyWings

Dear Rancher's Wife - I think I would be a little freaked out too. My DH has stared right through me a couple of times, and it really froze me in my tracks both times.

I can tell you, the antipsychotic helped my DH be LESS weird, like others here have mentioned. All the anxiety, anger, hallucinations, delusions, etc. have been much, much, much better once Seroquel was prescribed. It took a couple of tweaks, consulting with his neuropsych to get the dosage right (higher than initially thought...he seems to have a strong constitution). It never sedates him, and doesn't change his new AD personality much...but noticeably takes the edge off. And when he misses a pill (hides or drops it) we can tell the difference in 30 minutes or less. 

Please try this for the new phase it sounds like your MIL has entered. It truly has saved our sanity (what we both have left at least). I could not keep him at home without it. We are 6c and it made the prior 2 stages possible to navigate, though it still is not easy as you know.

I'm so sorry to hear about your mom too . But so much wonderful news with your children!!! Well done mom/Rancherswife! 

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