So Frustrated with Dr

RetiredTeacher

DH with VD from several strokes has had interrupted sleep for 7+ yrs. Dr has him on trazadone 150 and now he is only up 5x night instead of 15-20. He now has nightmare episodes at night. We had a video appt with Dr today to discuss changing or adjusting meds to help us BOTH sleep, my idea.. I emailed Dr a heads up with the new concerns and my husband's asonoghsia and inability to recognize declining health and issues related. The dr said he is not an expert in sleep disorders and wanted to refer DH to a sleep specialist. Husband said he didn't see it as a problem and didn't want the referral! I asked the Dr if this could be from the higher dose 150mg trazadone or a symptoms of progressing VD. He kept saying it was a sleep problem. I asked about a geriatric psych referral or neurology. He said they were not warranted, sleep specialist was the one to deal with sleep issues but since DH doesn't want the referral, he would have to abide by his wishes.....eventhough he has dementia! I was fuming! I haven't slept through the night in YEARS, being awakened multiple times! I'm done trying to find help and solutions for him while he is still able to make his own medical decisions, sees no problem and refuses to seek drs help. I need to take care of myself, I can't help him. I'm going to try CBD gummies and move to another room to sleep if need be. I am so tired of jamming earplugs so deep in my ears they hurt. My sweet, kind, loving self is unrecognizable at this moment. He can still do all his ADLs and with a structured predictable environment he can be home alone for a a few hours at a time. His memory is surprisingly good but he is so emotionally needy. I need to focus on myself and not make every moment of every day about him. I need to set boundaries for my own mental health. I do get out 4 hrs once a week but am planning to have a block of time for myself at home in the afternoon. I know the cavelry is not coming and I'm not going to get any help from the drs at this stage of his disease. Just needed to vent to people who understand. Thanks for listening.

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wose

Oh, my …. You are so right. You need to focus on yourself. My DH is exactly as you described yours. I sleep, if you can call it that in a separate room. It’s my haven. He does come in during the night when we have something to do the next day with endless questions. So now thanks to everyone here, I say we do not have plans tomorrow and that really helps settle him for sleep. He only takes Zoloft now. Drs are useless. I called my Dr. actually just yesterday cause my blood pressure was so low for a few days and I was worried (88/59) very dizzy and nauseous. The nurse started scolding me and I was so distraught, I hung up on her. I found a new Dr today and have an appt in a couple weeks. I am also going to call the hotline to ask for help. I called the only Male geripysch person in my area a week ago and they still haven’t returned my call. I’m exactly where you are …. so so very tired, at my wits end and about to succumb to this awful reality. I keep telling myself to help myself….maybe this time I’ll listen……you need to try to get more than 4 hours free time and some restful sleep, somehow. I’m so sorry for these clueless doctors, he was so wrong! Can’t imagine putting a dementia patient thru a sleep study for heaven’s sake!💜

wose

I forgot to say that we both have sound machines in our rooms. DH says he can’t sleep without it, but we know that’s not true. I really think the white noise helps a lot tho.

RetiredTeacher

Ty for your input. DH has always insisted on having the TV on all night, even though he doesn't watch it! I like it quiet when i sleep but have never put my foot down. I'm tired of jamming earplugs in my ears every night. I'm in control now. Told him when he falls asleep 5 min after he gets in bed, I will turn the TV off so i can sleep. If he wakes me, pitches a fit or turns the TV on i will move to the spare room and am telling him not to disturb me until I get up in the morning and meet him in the living room. We spouses need to survive this.

elainechem

Do you have your husband's power of attorney for healthcare? If so, the doctor should be listening to you and not your husband. After all, he isn't the best source of information about his own health anymore.

wose

CBN is for sleep.. It helps me but I haven’t given it to him . I also sometimes hang a big note on my door informing him I will be up at —— to get breakfast, please let me sleep.

RetiredTeacher

I do have POA for Healthcare but he is still capable of making decisions for healthcare at this point. The dr said they have to honor the patients choice even if they have dementia! I guess he's not far enough along cognitively.

Wose, I am looking into CBD products for me to help with sleep. I am not a fan of any type of gummy candy. I have heard there are CBD chocolate edibles I'm looking into. I am going to use your sign idea! Tysvm. This is such a difficult journey....Not having uninterrupted sleep for 7 years is taking its toll...

sfrsythe

I want to give you a hug. Our Neurologist is not very good either. Our psychiatrist is a GOD send. My DH also had problems with terrible nightmares and restlessness on Trazadone. He now takes mirtazipine and sertraline. No more problems with nightmares and he now sleeps pretty much through the night, most nights. I wind up waking up anyway just to hear him sleep. I’m still tired. Think it comes with the territory. I know there’s no one to rescue us but I’m thankful for the words everyone shares. Blessings to you!