I want out!

sandwichone123 · June 18

For the most part, medical education is focused on curing curable illnesses. As more acute illnesses are quickly cured with medication, physicians often seem out of their league managing chronic illnesses that make up a growing part of their patient load, especially illness that aren't readily managed with standard medications. I know our neurologist seemed genuinely upset with my dh's Alz diagnosis.

Part of me really understands—I can see how it would be depressing to care for someone when you had expected to focus on curing people. Still, I would so much prefer that they take that frustration and learn about managing the fast-growing Alz population, rather than just blowing it/us off in frustration.

ButterflyWings · June 18

@Palmetto Peg If you can record him screaming at you, that should help expedite things. I know it is hard to think about turning on your phone camera in the middle of a crisis, but even if it just picks up the audio, that evidence may be critical to get your PCP or others to act more quickly to support a change.

Sherry LD · June 20

https://alzconnected.org/discussion/comment/213100#Comment_213100

if you have an iPhone it has a recording app. I have used it several times with my DH

Palmetto Peg · June 22

And, on Friday I got a call from my PCP saying that the neuro-psychiatric practice he was scheduled to see had reviewed his records and felt that his disease was too advanced for them to be of any help to him. They gave me the name of a neurologist to call for an appointment. So where is the help? He has been better lately, but I am always walking on eggshells waiting for another outburst. The recording idea is a good one, and since I have my phone with me at all times for safety, it wouldn't be hard to just turn it on. It seems that the neurologists and the geri-psych beds are all full most of the time. What does that say about the state of health care for an aging population? Thank you for all of your suggestions! I am holding on.

M1 · June 23

Peg, take him to the ER if you have to and just say you cannot care for him at home. It's a true statement. If you refuse to take him home they'll find him a bed. Yes, it's a broken system, but do what you have to do. He can't go to MC with this hypersexual behavior either.

Lorigon27 · June 27

https://alzconnected.org/discussion/69525/i-want-out

So sorry you're going through this. I guess the Alz causes lack of inhibition. It is difficult when my DH acts so childlike & wants intimacy. Not to mention the not showering, regularly. And, I get the being 74 issue, too. You're not alone.

Palmetto Peg · June 29

When I thought I had absolutely reached rock bottom and couldn't go on, an amazing group of people got together and put a plan in place for me. I know I have mentioned that we live in a CCRC, but have only been here about 6 months. I went to the caregiver support group here last Tuesday, and when it was my turn to talk, I opened my mouth to speak, and instead burst into tears. I managed to tell them what had been happening, and the very next day I was called into a meeting with the Executive Director, the Chaplain, the doctor in charge of the memory care unit, and social worker, and our nurse practitioner. The nurse practitioner called and got us an appointment with a neurologist the next day (I have no idea what part of her soul she had to sell to get that appointment), the Executive Director gave me a key to a vacant guest apartment where I can go anytime he starts to get loud and aggressive, and they also gave me a pendant with a button to push that will bring security to me within minutes.

The doctor appointment went well. She put him on Seroquel and also Cimetidine (generic for Tagament), which has been shown to help with hypersexuality in men with dementia. So far, the Seroquel has definitely calmed him down, as it does make him sleepy. The doctor said that would ease up a little after he gets used to it, but for now he can sleep all he wants!!! I actually have had two nights with more than 4 hours sleep and have not been groped and fondled in my sleep! I'm sorry to be so direct in this, but anyone dealing with hypersexuality knows how dreadful it is. The doctor also felt confident that he has Alzheimer's, based on symptoms and his answers to the memory test she gave him. She feels he is in the late-moderate stage. She didn't use numbers, but he is pretty far along.

Our memory care unit here does not take patients who are highly aggressive and hypersexual, so helping with those issues will also help me have him placed here, near me, when the time comes. I think if this improvement continues, he will probably go to memory care in another 6 months or so, but I won't know for a while.

At any rate, I am at least enjoying a little peace and relief from that mind-numbing fear of being assaulted. Thank you all so much for your encouragement and suggestions. You are an awesome group of people traveling together down a long, terrible road. Bless you all!

M1 · June 29

this is good news Peg. At least there’s a plan….

harshedbuzz · June 29

I'm glad your village has your back.

It sounds as if things could settle down which would be wonderful. Thanks for the tip on Tagamet— who knew.

HB

midge333 · June 29

Wow! That is great news. I hope you can get some rest now.

Quilting brings calm · June 29

great news. So glad your support group and the staff have your back.

ButterflyWings · June 29

I got tears of gratitude in my eyes, reading this. Thank goodness the team took swift action to help you on so many levels, as you needed and deserved urgently.

Your courage in sharing all that you were suffering through, paid off, both for you and your DH. And no apologies are needed, ever, for sharing in confidence with the anonymous friends here.

although there may be a few ups and downs ahead, you are on a whole new path, with wrap-around support it seems, thank God!

housefinch · June 29

Wonderful to hear you’re getting support and he’s getting more care!

trottingalong · June 29

https://alzconnected.org/discussion/comment/214236#Comment_214236

Such great news to hear. Sometimes it truly does take a village.

ImMaggieMae · June 30

That is such great news. Now he’ll get help and you have the support you need. I hope the Seroquel continues to help and that the doctor increases it as needed.

mrahope · June 30

So glad to here that help has arrived. Also, just having some kind of plan or vision for the next six months will surely help you feel a bit more calm. I'm so glad they heard you.

MN Chickadee · July 2

What a wonderful team you have at your community. Thank you for sharing your experience even though it's difficult, others will benefit from your openness. Nothing is off limits with dementia. I hope things continue to improve.

I want out!

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