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My two cents(1)
Posted: Tuesday, July 9, 2019 11:19 PM
Joined: 12/15/2012
Posts: 112

My first husband died of Alzheimers at age 54 (had it for 8 years) and then my mom died of dementia about 4 months later.  I now live with my new MIL who has dementia.   My husband still works, so much of her care falls on me.  After my DH and Mom I am taking a whole new approach to this one.  I took him to all the appointments, gave him all the drugs and worried about all his care to the "Nth" degree.  I had a great doctor that asked me if I realized that this is a terminal disease and did I want him to live as long as possible or did I want him to be happy.  I said then I wanted him happy and she said "then what difference does it make if he dies of this or from the diabetes".  From that point on I never checked his blood again and let him eat what he wanted.  But I still had him on all the anti depressants and Aricept and the like.  I never slept (amazing I made it to work without an accident) and stressed over all the odd behavior, and in the end he got a little violent (he was 6'4").   It was a nightmare that I never thought I would have to live through but here I am again.

This time though I only take her to the doctor when she is ill (with something other than this).  No meds except the heart pills she has been on for years and years.  I sleep every night and lock the door to the bedroom (yes she has knocked a few nights but mostly sundowns in her room).   I know going in there will be weird behavior and try to keep my cool.  Most important is that I take time for me.  I am fortunate enough to be able to have someone come in and bathe her twice a week.  I would rather spend the money on that than on a myriad of  doctor visits.  

When she starts to get ramped up and angry I shut it down immediately (yes I do tell her to knock it off).   My husband and I leave her alone, for up to two hours sometimes.  We questioned what would happen if she fell or was hurt while we were gone and decided that it would be the same thing that would happen if I fell or was hurt.  She isn't going to be calling 911 for me so same risk.  After all of this I learned I am no good to her if I run myself into the ground (or go up to 300 lbs again).  So we make her as comfortable as we can while still trying to keep our life ours.  

I  encourage anyone out there to take time for you (even if you can't see any way to do it) even if it's just locking that door for and hour and taking a bath.  You have to do what is right for you.  No guilt that you need help, no guilt if you choose not to do what the doctors tell you, no guilt if you have to put them in a home.  Do the best you can and take care of you as well as the person you are caring for.  

Posted: Wednesday, July 10, 2019 9:26 AM
Joined: 1/25/2018
Posts: 603

For the most part I agree with many of the points you make, and the health care decisions you've made. I worry in the case of my DW that withholding basic medical treatment will make her more uncomfortable as she endures this dreadful disease. Diabetic meds- without them she is relentlessly thirsty, headache, and recurrent UTIs.  Blood pressure management- headaches again + I worry about a stroke that may not kill her, just take the few abilities she has left, antidepressants- God, I can't live with her without those... You see, from my point of view I want to continue keeping my DW as healthy as possible until she can no longer find some joy in life. Once she is non-verbal, non-ambulatory, or in unrelievable pain- sure- Hospice-no meds-comfort measures only. I don't see your family member quite there yet, but you know the situation better than I and should do what you think is best for you and your family. I just wanted to point out some of that medical intervention you are declining may be causing more discomfort than is necessary. In the end this disease is going to win no matter what, but I see my job as trying to help my DW get as much joy as possible while there is still a spark of awareness in there.
Posted: Wednesday, July 10, 2019 9:47 AM
Joined: 6/11/2019
Posts: 516

You both make great points. I know I need to do more for myself but with working full-time, trying to get us down to 1 house AND managing my mother's care ... WHEN?!

 I'll work it out. Once I'm down to 1 house, I will be in a better place to manage from. Thankfully, she's still pretty high-functioning (dresses self, eats, takes some meds) but can also be pretty uncooperative. Daycare told me I'm in the worst spot because she's still pretty present and believes she's OK. I hate to wish her into a state where she's NOT here at all.

Markus, I agree with keeping her for as long as she's able/present. I have family/friends who regularly say "you need to place her" and I'm not there yet. I may never be though I know that would be easier for me. I'll have to see. 

She would be appalled if she were in her right mind so I do all I can to maintain her sense of dignity. She shines through some days and I relish those. I know that won't always be the case. I hope something physical WILL claim her before this effing disease deteriorates her completely.

Eric L
Posted: Wednesday, July 10, 2019 11:16 AM
Joined: 12/5/2014
Posts: 1286

Markus, you are spot on in this case. I look at it as a quality of life issue. When my MIL was in the earlier stages, she went to physical therapy a 2 or 3 times a week because of her arthritis. At that point, it was totally quality of life. She was certainly declining cognitively, but the physical therapy helped with pain and mobility. As time went on, incontinence set in and it was just too tough for her to follow along with the exercises. At that point, we stopped PT because it was no longer contributing to her quality of life.

We even kept her on the low dose aspirin for as long as possible. We figured that our lives would become more difficult if she had a stroke and survived, so it was in our best interest to prevent it.
Posted: Wednesday, July 10, 2019 3:42 PM
Joined: 7/12/2017
Posts: 1546

I agree that we over medicate people sometimes.  My mom is on nothing right now, after being on 12-15 meds, most of which where helping symptoms caused by other pills.  So she has a bit of high blood pressure, the BP meds created so many issues she is off of them.  Her quality of life is better.  She already is having mini strokes (vascular dementia) so if they are going to happen, not much I can do.  She already lives a pretty healthy life and yeah she drink rum every day, but hells bells, fair enough, she isn't drunk and for her, many less problems than sleeping pills.

Anyway, I think we extend body life sometimes at the expense of quality.  So I totally get it.  I can't worry my mom will fall if I leave the house.  She can fall if I am here and upstairs.  Good enough well is good enough

Posted: Thursday, July 11, 2019 2:24 PM
Joined: 7/17/2017
Posts: 403

Well said!! Your two cents is worth a million dollars!!  Fear of mortality drives a lot of well-intentioned people.
Posted: Thursday, July 11, 2019 8:45 PM
Joined: 12/15/2012
Posts: 112

Markus I just want you to know that we will not withhold any meds that ease her pain.  We are working with her doctor on that now and he said Tylenol (double the dose sometimes) for her aches and pains until we need to go to something stronger. In the end I'm more than willing to give her the "good drugs".    It's just that the Nemenda and Aricept did little if anything for my DH or my mother (and quite frankly I don't want to prolong anything)  and the antipsychotics are what made him violent.    But my circumstances are not yours and the decisions you make for your loved one will be right for you.  I just want everyone to know that what ever decisions they make are theirs to make with no guilt on them at all.  One last effort to get them (and you) to take time for yourself because I almost killed myself the last time trying to do it all.  I gained so much weight because eating became my friend when all the others were gone and I tried to work full time, take care of him, and be there for my family.  I could feel the blood pressure rising in my neck.  If I would have had a heart attack or stroke who would have taken care of them then?  Ask yourself that,  then take that day, hour, minute or even a few seconds to breathe and get some respite.
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