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Why am I putting myself through this?
rowcod1116
Posted: Friday, October 26, 2018 12:39 PM
Joined: 10/21/2018
Posts: 6


Thank you! I feel like giving up already but trying not to. The doctor called yesterday and said it wasn't her thyroid and wanted us to admit her into detox for a pain med she is on that she shouldn't be on with dementia. She stressed to us that it is so much worse with a dementia patient than a regular person when they are tapering off.

We really don't want to and everything has been fine until today. My husband took her to stay in her home for the weekend since the weekends are the only time that we can take off to her house to stay with her. While we were packing stuff she swiped more pills. I have been keeping a strict count of them since the doctor said to do that. I counted them again after we thought we caught a glimpse of her near the box they were in when we walked back in the room and sure enough there were some missing. 

I had a talk with her and she started crying saying that she promised she didn't take them and that she would never lie to me. I explained that I didn't think she was lying but that she may have forgotten she got them. She looked through her purse and "found" the missing ones but started blaming her son for putting them there.

Now they are on their way to her home over 3 hours away and he is miserable. She won't talk to him and she is saying that he is trying to put her away so he is making her look guilty. 

I am at my wits end right now. I love my husband dearly and by default care for her. We have never been close and through much of our marriage she has treated me badly. I wasn't even invited to holidays when my FIL was still alive. She would tell my husband to come but leave me at home because I wasn't welcome. 

I don't want her to have to be put into a detox facility but this is getting harder and harder and we are only just beginning on this journey. 

We also have to deal with constant smoking in a non smoking household. She never asked if it was ok. She just started lighting up as soon as she walked into the house. She bought a brand new carton around 4pm Tuesday after seeing her doctor and as of today (Friday) she has only 4 packs left. I don't even know how many packs are in a carton but that is excessive and stinking up my house.

Her other family members have scattered and we are all that she has to take care of her. We don't mind but she is not happy. She just doesn't want to be in a different state than where she was born and raised. We are unwilling to move back. 

Is this normal behavior? The doctor told her that she was lucky to have me because I am the one that called her about the problem and I don't have to be there. The doctor told her that I was only there for the ride. So far she has not turned on me and is looking at me now as the authority figure. She is taking everything out on my DH. I am waiting for it to turn at any moment since she has never cared for me to begin with. I took her baby is what she has said. He is 42 years old and she got mad at him last night because he got married and moved away. She said he should still be living at home at his age and that a child is supposed to follow their parent not the other way around. 

Sorry for rattling off. I have a weekend to myself and I should be happy about that but all I can think about is my poor husband and what he is going through since she is mad at him and blaming him saying he planted her pills in her purse so she would get in trouble.


Eric L
Posted: Friday, October 26, 2018 2:58 PM
Joined: 12/5/2014
Posts: 1192


Just reading your post..

1. See if you can't find a way to get a referral to a geriatric psychiatrist. They seem to have a better handle on what drugs a dementia patient should and shouldn't take. A good geri psych should be able to tell you if detox would even be worth it.

2. The pills need to be in a place she can't find them.
3. "Talks" don't work. You may as well just go talk to a fence post. I know it sounds harsh, but PWDs brains don't work that way. Someone has to take charge.

4. Social norms sort of go out the window with PWDs. My MIL was a very "proper" sort of lady. She curses up a storm these days. I'd just say that your MIL no longer has any sort of inhibition anymore.

5. My MIL (just this morning for example) will curse and complain even in her own home that she owns and spent all of her life working for. You'll quickly find out that for the most part most folks with dementia just aren't happy in any sort of setting. It's just part of the disease and it's terrible, but it's your husbands job to keep her safe.

6. A couple weeks back, my MIL had a temper tantrum. I asked her what was wrong. She told me she was upset that 'everyone just leaves her all of the time'. It was a Friday. My wife and her brother were at work. My kids were at school. MIL was a teacher and had a strong work ethic. She knew (obviously not anymore) the importance of being at school and work. It's the dementia talking.



Daisylost
Posted: Friday, October 26, 2018 8:58 PM
Joined: 5/12/2018
Posts: 81


Hugs to you, you need them now.  Please remember to hug and touch those in your support circle.  

Hate the disease and not your MIL.  Nothing will make sense any longer.  It's easy to think they are lying or doing something on purpose, they simply do not remember.  

Please care for your husband too, comfort him as he deals with this.  I don't agree that it's just his responsibility.  He is your husband and therefore, you should support him.  I pray for your family and for strength that is needed now.  

<3


citydock2000
Posted: Friday, October 26, 2018 9:42 PM
Joined: 9/7/2017
Posts: 797


You may also talk to the geri psych about help with taking away her cigs - if she moved into a SNF or a memory care facility, she would not be able to smoke inside, so your home shouldn't be that different.  He may be able to offer assistance to keep her calm while she detoxes from medications and from cigarettes.
harshedbuzz
Posted: Saturday, October 27, 2018 4:58 AM
Joined: 3/6/2017
Posts: 1838


I am sorry you are in this situation.

I would suggest a geri-psych admission. There often comes a time in caring for someone with dementia where happy" is no longer possible and "safe" is the best you can do. 

I don't understand from your post why you are acting against medical advise regarding the detox. Take it from one who has BTDT, addiction plus dementia is a challenge beyond the scope of a loving family. I also sounds as though she may have some underlying mental health issues as well. Professional care can keep her safe from complications as she is weaned off the medication. They could also address the smoking which has the potential to end horrifically if she starts a fire.
MacyRose
Posted: Sunday, October 28, 2018 1:54 PM
Joined: 12/15/2011
Posts: 3935


The number of cigarettes she is smoking proves she is out of control.  No one needs to smoke that many cigarettes in 4 days and she probably has no idea how many cigarettes she has had.   I don't think I would allow her to smoke in your home as it will get into the fabrics on your furniture and your carpet and ruin them to say nothing of the health dangers to yourself, your husband and your pets.  You need to start treating her like a child and basically tell her no smoking inside the house.  

Take up ALL of her medications and keep them under lock and key. She gets the medication you dole out and nothing else.  I agree with the doctor that she needs to go into detox for the pain med problem.  I'm not sure why you wouldn't want to do that?    They can make the detox a lot easier on her than doing it at home and drastically safer. 

Once she is through detox, that is the time to begin a smoking cessation program if it was not done in detox (I'd definitely ask about if that could be done as part of the detox.)  You would be surprised what people with dementia will believe.  I would tell her cigarettes are being banned in the USA and buy her a vape pen.  You keep the cartridges.  Ask your MIL's doctor or a doctor near you who sees her to prescribe Nicoderm CQ.  Put the patch where she cannot reach (middle of upper back, perhaps.). At the same time, disappear her cigarettes.  For the record, you have no idea what happened to them.  I would say to her "Well you smoked an awful lot of them, are you sure you didn't finish the box?"  That's when I would say that cigarettes are being banned and pull out a vape pen loaded with a cartridge.   Yes, having a PWD living with you is like having a teenaged toddler.  You still have supervise them and control what they get into.  Once  you switch her over to vape, taper off the nicotine over a few weeks and months.  Vape doesn't stink anywhere near as bad as cigarettes and is usually easily accepted, especially if there is no other alternative.  Once your husband gets financial POA, he can take money and credit cards and checks away from his mother and then it is only up to him as to if cigarettes are purchased which they should never be again.  

I'm also not too crazy about you and your husband taking her home every weekend because changing locations like that can make a PWD much more confused, angry and stressed out.  It is better to maintain a single consistent location.  

 

 


MacyRose
Posted: Sunday, October 28, 2018 2:59 PM
Joined: 12/15/2011
Posts: 3935


For some reason I can't edit what I posted above.  I wanted to add, that I realize this is really difficult,  transitioning from adult child to essentially your MIL's parent or warden - take your pick.  I think you and your husband are making good progress.  None of this happens fast.  I do think that rehab is a great idea as there is no question that your MIL needs to get off of pain meds that are contraindicated for dementia patients as they can make dementia far worse. There is also the possibility that your MIL has drug induced dementia and IF that is the case, taking her off of the pain medication may completely reverse the dementia symptoms!  Based on this, I would not delay but, in fact, get her to rehab ASAP!  If there is even a single chance that her dementia can be reversed, this is it!  And why wouldn't you want that for her? (and you both?) Perhaps this article will be helpful to you and your husband: 

https://www.worstpills.org/includes/page.cfm?op_id=459

If rehab does not fix this problem, then you need to be aware of this information:

https://www.elderconsult.com/some-drugs-make-dementia-worse/ 

http://www.dementiacarestrategies.com/Medications_to_Avoid_in_People_with_Dementia.pdf 

What this comes down to is no matter what, she needs to go to rehab.

As to the past, well, she treated you like crap and now she needs you.  That's a very bitter pill to swallow.  What you need to do is balance her needs against those of your husband and if you. have children, their needs as well and finally the needs of your pets.  If find she is dominating your household and you can't do the things you normally would, if you find you are losing friends because you can't leave her home alone and your husband is suffering from her general nastiness, then placement may be the best option for everyone.  Please keep this in mind as you try to figure out what to do.  She is not going to be happy in any case.  So you need to forget about that and think tactically.  How can her needs be met while the needs of the people and pets in your family are met?  Trust me, no one wants to be placed, but often it is in the best interest of the person AND their family.  


MacyRose
Posted: Sunday, October 28, 2018 3:46 PM
Joined: 12/15/2011
Posts: 3935


BTW, there are 10 packs of cigarettes to a carton.  So she is smoking an average of 2 packs a day. Holy smokes!  First off, that is super expensive ($6 per pack - $4300 per year) and secondly, it is just way, way, way too much of a risk health wise.  But in a dementia patient she may be doing it as a substitute for work.  If I were you, I'd try having her fold your towels...ALL of them...again and again.  That may cut back on how often she wants to smoke as it will engage her mind and body.    Smoking causes people to be cold in their extremities - especially hands and feet and if you can cause her to stop, she will feel warmer.  

My own mother, during her battle with dementia, had a problem with drinking too much wine at lunch.  My parents would always go to the country club for lunch, so I spoke to the manager and asked him to buy alcohol free wine for her which he was glad to do as he had had to carry her out of the restaurant to the car on more than one occasion.  I also bought alcohol free wine for her at home.  You do what it takes to make it work.   So that is why I am suggesting you move MIL to vaping and then to total cessation.  You keep and control the cartridges.  The cartridges are sold by how much the person smokes.  I would start her on a pack a  day cartridge and then start backing it off after one or two weeks of her getting adjusted to vaping.  You can also buy the specific vape cartridge that matches the brand of cigarettes she smokes - it apparently tastes the same.  


abc123
Posted: Tuesday, October 30, 2018 1:18 PM
Joined: 6/12/2016
Posts: 670


Wow! A lot of what you said reminded me of my MIL. I feel for you. I really hate it when people say not to hate the person, hate the disease- BUT it’s true. Talking to her about important things will do no good. My MIL was on heavy meds for pain and I had to take over. I hid her meds because she would dump them in her bed and put a few here and a few there. She didn’t know any better. My MIL was on 10 mg Hydrocodone and Soma for years. Please be extra careful about her smoking. I advise hiding her cigs, ash treys and lighters any time she is unsupervised for any length of time. Her smoking is an accident waiting to happen. As time goes by, she will forget she smokes. 

Looking back on things, my sister in law and I both realized that my MIL had been showing serious signs of dementia for at least two years before being diagnosed. But she was always such a high maintenance/high drama type of woman, we both thought she was jerking our chain! My sister in law and I both have feelings of guilt because of it. I apologize for rambling. I just want you to know I feel your pain and I understand. My MIL used to flip on the light in our bedroom in the middle of the night and come get into bed with us. She always got in on my side. She’s been gone five years now and you know what! Sometimes I miss her like crazy! Go figure!


abc123
Posted: Tuesday, October 30, 2018 1:21 PM
Joined: 6/12/2016
Posts: 670


PS ~ you have gotten excellent reply’s to your post!
Jo C.
Posted: Tuesday, October 30, 2018 2:17 PM
Joined: 12/9/2011
Posts: 10221


Some of the replies you have received may give some possible new options.  I wanted to share what I did with my step-dad with his doctor's blessing.

Step-dad wanted accesss to pills all the time, and boy; if he could get them, he would have taken them and that would have caused a trip to the ER as he wanted them over and over and over.   Because they were not accessible and given only at prescribed times, he was irritable and a bit grouchy.

So . . ..  as said, with the doctor's blessing.   I bought Tic-Tacs, took some empty prescription bottles and put the Tic-Tacs in.   One bottle was white pills, the other one, red pills.

I then let him have his "pills" as often as he wished.  I did check to ascertain whether he really was feeling pain; BUT he always said that his pills were working fine.  Ah; good.

Later, he had chronic severe GI pain.  He was worked up by three different GI specialists over two years but nothing was found.  Negative scopings up, negative scopings down, MRIs negative, still, he had dreadful pain which sometimes ended us up in the ER with him doubled over.

Well . . . . I had found an excellent Neurologist who saw dementia patients as a routine part of his practice.   We went in first visit and all was going well.  Second visit the Neurologist asked me if there was anything else going on; I responded all is doing fairly well if it wasn't for that gastrointestinal pain that the GI specialists cannot find a reason for and it really is affecting him and his quality of life.

Neuro did a little more in exam, took me aside and said, "I think that there is a chance that his pain may actually be a delusion."   What?????  Pain, a delusion? 

Step-dad was started on a low dose of med that helps quell delusions and INSTANTLY, that first day, all pain disappeared and never, ever came back again.  This after years of doctor appointments, GI specialists, scopes, MRIs, ER visits, etc.  A delusion!  I sure learned something new from that.   Nothing like having an excellent dementia specialist.

The beat goes on and as I am prone to saying, it is like juggling watermelons while simultaneously tap dancing and whistling, "The Flight of the Bumblebee."

J.


SelEtPoivre
Posted: Tuesday, October 30, 2018 2:36 PM
Joined: 3/8/2018
Posts: 797


Jo C. wrote:
Later, he had chronic severe GI pain.  He was worked up by three different GI specialists over two years but nothing was found.  Negative scopings up, negative scopings down, MRIs negative, still, he had dreadful pain which sometimes ended us up in the ER with him doubled over.

Well . . . . I had found an excellent Neurologist who saw dementia patients as a routine part of his practice.   We went in first visit and all was going well.  Second visit the Neurologist asked me if there was anything else going on; I responded all is doing fairly well if it wasn't for that gastrointestinal pain that the GI specialists cannot find a reason for and it really is affecting him and his quality of life.

Neuro did a little more in exam, took me aside and said, "I think that there is a chance that his pain may actually be a delusion."   What?????  Pain, a delusion? 

Step-dad was started on a low dose of med that helps quell delusions and INSTANTLY, that first day, all pain disappeared and never, ever came back again.  This after years of doctor appointments, GI specialists, scopes, MRIs, ER visits, etc.  A delusion!  I sure learned something new from that.   Nothing like having an excellent dementia specialist.

J, I remember you posting about this, and wondering if my mom's stomach issues (usually "I'm nauseous, I'm sick" despite PPIs) and leg pain (despite PT and Advil) might also be a delusion. She's been off the PPIs since her admission to MC last month (no stomach issues at all), and has not complained of "excruciating" pain in her leg at all. I've realized that a lot of it was attention seeking (since it generally only happened with/about me) and delusional so someone would soothe her.