Getting closer and closer to placement every day.

ghphotog

I've been putting this off for as long as possible thinking I might be able to endure until the end. Maybe once we get past stage 6 things will quiet down.

My DW is now dbl incontinent. Then like a switch was turned on she won't go to bed until 1 or 2 in the morning now. I have to get up every hour and make sure she hasn't let the dog's out in the freezing cold all night and to check on her. Ha, but she comes into the room every few minutes anyway turning on the lights screaming at me that she hates me and can't stand me so sleep is becoming elusive.

She has been in hysterics now for nearly a year I would guess. Mostly in the mornings but now also in the evenings. She's on Mementine and Zoloft and I think those help. She absolutely won't wear Depends and goes completely hysterical when I try to put them on her. She'll wake up in the morning and after soiling her clothes I'll try to get her to the bath room and to clean and change her, she wipes once sees the poop on the paper and screams at me why I did that to her and throws the paper on the floor. She will put her hands in it while she crying and screaming, then rub her eyes. I try so hard to keep her from doing that but she just screams and yells more. I'm surprised the cops haven't knocked on our door yet. She does eventually calm down but remembers none of it.

I just started smoking cigarettes again after 20 some odd years. I don't want that addiction again but it something that just goes together with this kind of stress. I'm on Welbutrin and my doctor just put me on seroquel for anxiety and to take the edge off on those days nothing else seems to help. I asked for something stronger but he is very reluctant to prescribe benzodiazepines and I guess I'm glad. I would probably abuse them anyway.

My body is falling apart even with three days of daycare. I need more time off than that now.

I've been waiting for this decision to be made for me by circumstances and it looks like that decision is being made like it or now. She still knows me in a platonic kind of way, has no idea of our lives together anymore but she still can be a very loving, kind and compassionate woman. We hold hands everywhere we go but those inbetween moments are adding up.

Quilting brings calm

While you are arranging placement, can you ask the doctor for a sleeping aid for her?. Mirtrazipine is both an antidepressant and a sleep aid. My mom takes it along with sertraline( generic Zoloft).

easy23

I second the Mirtazipine recommendation. It helps my husband sleep through the night.

Denise1847

I am so sorry. I don't know how you have endured this. I know that I would not be able to manage that type of behavior for any period of time. Please take care of yourself and get her some meds to calm her down, even if it causes her to sleep. Your health is very important. Don't let this take you down. I think you are a saint.

GiGi1963

You are well past time thinking about memory care and please stop smoking! It doesn't help. Help your DW find a nice facility and take care of you. Well deserved. Hugs

ghphotog

Thanks everyone, just a rant. I hope things like this don't scare those just beginning this journey too much. I just don't have the heart yet to place her. It will be harder than when I placed my mom but I to.

M1

Ghphotog, you have endured more than most. I find it ironic that your doctor put you on Seroquel- that is likely what your wife needs to calm her down. She may need to be hospitalized- I agree completely that you would both benefit from placing her but i doubt any facility will take her in her current state. Take her to the emergency room and ask for evaluation and treatment, you cannot take care of her at home any longer.

ghphotog

We're actually in bed early tonight!

Iris L.

Memantine and Zoloft do not seem to be helping. Why are you on seroquel and not your DW? Appropriate medication can allow the PWD to remain in community for a longer period of time.

Also, if this is a sudden change in behavior, consider checking for a silent UTI.

Iris

Walter0617

I understand your reluctance to place your DW in a MCF. I was reluctant, too. Finally things got so bad that she ended up in a geriatric psychiatric facility. After two weeks there, it was clear that she needed more help than I could provide at home. She has been in the MCF for about six weeks and seems to be adjusting fairly well. Her meds were tweaked so that she is no longer agitated and lashing out at me, as she was doing before the hospital stay. Besides being difficult for me, she was miserable with the way things were. Now she receives good care, eats right and is (for the moment) appropriately medicated. While the meds have caused her to be a bit more lethargic, it is far better for her than being extremely agitated. As with your situation, she would not accept incontinence care from me. The staff at the MCF are better equipped to handle this, and she is accepting their help. Placing her in MCF was really hard for me, but I know it was the right thing to do. She is functioning far better than she did at home. Now I can visit her regularly and we can make the most the of the time we have together.

Walter0617

ImMaggieMae

Iris posted:

”Memantine and Zoloft do not seem to be helping. Why are you on seroquel and not your DW? Appropriate medication can allow the PWD to remain in community for a longer period of time.

Also, if this is a sudden change in behavior, consider checking for a silent UTI.

Iris”

I agree with Iris. Seroquel or other antipsychotics have helped many dementia patients here with extreme agitation and delusions like you are describing here.

Howaboutnow

@ghphotog i too am hovering daily around the decision about placement. When you think it can’t get worse it gets worse. I am so very sorry we are here. I’m still doing this because every moment isn’t awful. Like how you expressed the relief of “we’re in bed early tonight!”. Just a bit of help like that one night encourages us to not give up quite yet.

But the anxiety of constantly being on alert, watching out for the next accident, pee, poop, eloping, breaking things, anger targeted at us…means we are always depleted. And even when there is no incident, we are stressed waiting for it. Cause it will be coming.

Please, you are important, your health is important. I don’t want to be irritating or motherly. I only want to express that I care. your body and mind are being pushed to the limit even without the extra work required to protect your body from smoking. I feel ok making a comment as you voiced your concern too. I won’t be a hen about it, please know I’m on your side and only want the best for you.

Thank you for sharing. I just committed to myself to find a placement option for DH IF i should need it, in part because of you. I understand my own situation sometimes better when i recognize it in others.

ghphotog

It was a good night. I was up early and had a quiet cup of coffee, minimal drama this morning when she woke and no drama at all when I took her to daycare. I'll take those days when they come. The day is still young and yes I keep my phone handy waiting for a call that my mom fell again or my DW is having trouble at daycare.

I know placement is the best thing for both of us and that day is getting closer I know.

Thank you everyone your wisdom and concern! It means a lot.

Howaboutnow

I’m glad you’ve got some quiet time this morning 😊

ghphotog

Don't mean to keep bumping this post up but a couple of questions I should answer.

She just came off a round of antibiotics for a UTI but there could still be something going on. I'll call the doc and see about submitting another culture.

As far as myself being on Seroquel I was a bit surprised when my doctor suggested it but he said it also works as a non-addictive or tolerance based "boost" if you will for depression and anxiety as an addition to Welbutrin so I thought I'd give it a shot.

I need to contact her neuro for something to help her outburst.

mrahope

Not too much more to add, except another person with experience with Mirtazepine. My DH slept for 8 hours the first night we had it. Watching to see if this continues to help, as he just started last week.

jfkoc

Please do find your plan B facility now. You do not want to find something during an emergency,

Please to keep us in the loop.

Buggsroo

Ghohotog

I saw your post. My husband was very difficult at home and finally at the urging of my social worker I had him admitted to hospital and told them I couldn’t take him back. I was also informed that the way he was acting meant no long term care would take him and that he had to be stabilized before he could go to a long term care facility.

The fact you are on meds for anxiety and other problems would indicate that a hospital admission is due. I saw a huge improvement in my husband at the hospital, he was clean and well cared for and I am sorry I didn’t do it earlier.

The hospital had set up a ward like a mini long term care home and my husband improved. Sadly he passed five days after he went into long term care. Both did a fantastic job with him. Honestly, I think you will benefit as well. You can visit your wife and have a much better relationship than you have now. Take it from someone who has been there. I wish you peace.

ghphotog

https://alzconnected.org/discussion/comment/192541#Comment_192541

Thank you Buggsroo! I believe you are very very correct but I just don't have the heart to do it yet.

I mentioned in an earlier post that she will have very brief moments of clarity where she seems to know what is going on. She'll say things to me like "I don't want to be this way. . " or "please don't send me away. . ."

So difficult but I know I should do it and soon. I just need to somehow steel my will, harden my heart a bit and just do it.

Jeff86

Ghphotog — my heart aches for you, facing this difficult decision. My DW would, at rate but heart-rending moments, say, “Please don’t throw me away.”

I did manage to keep her home all the way to the end of her journey. But not without a lot of help (in the form of aides), as she needed help with all ADLs for years. And my DW did not suffer from agitation and anger.

Only you, of course, can make this decision. But you have to survive your DW’s illness in order to keep helping her. Your health issues suggest you may be reaching a point of no return.

Dio

Please heed Jeff86's advice:

"Only you, of course, can make this decision. But you have to survive your DW’s illness in order to keep helping her. Your health issues suggest you may be reaching a point of no return."

Gig Harbor

Another suggestion might be to place her now but as she gets closer to the end you could possibly bring her home. An acquaintance did this and set up a bed in their living room and had help from hospice and caregivers. Her husband was bedridden by that point but was able to spend several months at home and was easier to care for once he did not get out of bed.

M1

This is my current fantasy... I would love to bring her home to hospice if/when the time comes.

DCCEPEK

Do it girl that's your prerogative. My MIL is doing better on meds as time draws near. I'm truly thankful for the honesty here in this forum

Mimi50

https://alzconnected.org/discussion/comment/191366#Comment_191366

No it doesn’t scare me I guess little new to caring for my husband. He was diagnosed year ago and still in the ES. Better for me to know what might happen in the future. I completely understand why you are not ready for placement. If you are not getting the rest that you need. Then you won’t be able to care for your wife. Because you are emotionally and physically exhausted. Is there away to bring in caregivers to help you ?

mrahope

I completely feel where you are. I am actually frightened of anger and aggression that might happen when we try and place DH. I tried getting him to go to a day care program, then two different in-home caregivers and he rejected all three. Even though my kids are urging me to begin the search for placement, I'm still afraid of his angry reaction(s). He has thrown small objects at me in the past. Lately he told me he wanted to divorce me because I moved a chair from one room to another (and it was MY chair). It's hard to feel like the human in the house with you is no one you know and is possibly capable of terrible things.