Feeling overwhelmed and tired of dealing with this disease
I am so tired of the uncertainty. Whenever I think I can handle the behavior, I quickly fall back into a slump. I want a normal life, NOT this new normal. His hallucinations are off the chain. He gets angry constantly, accusing someone of stealing something or that someone was here. He sees people almost every day. I can't see them; no matter what I say, it doesn't satisfy him. Lord knows I'm trying to deal with him, but I'm getting so tired of this disease. I see a therapist once a month, but that relief seems short-lived. I am feeling defeated, and no end in sight. MY DH's memory is definitely declining. The seminars, webinars, blogs, and all the information I've read tell me this is what to expect. Well, I'm tired, and I don't blame him because I realize it's the disease, but I AM HUMAN TOO. I need to go to work to get a break. I have to work because we still have a mortgage, and his SS isn't enough to cover all the expenses. I get so aggravated that I can't seem to keep my head above water. Whenever I take a deep breath, something else comes along for me to deal with. Thanks for listening, I needed to vent😩
Comments
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I'm right there with you.
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Hello this is an absolutely awful disease. So sorry to hear you are finding it so tough. It zaps all your strength, it demands all your energy and ingenuity. You are not alone, we are all going through this rotten thing. It was never meant to be like this, its cruel to ourselves and our partners. Have you read The Cavalry’s NOT Coming? Find it on this site it helped me so much and hopefully it will help you too. You can't do anything about the uncertainty, that drives me nuts too, getting enough sleep so you can cope with all the other stuff is important, and that is hard to get. I hear you and send hugs and care.
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Sadly it's gets worse. My DH accused me of men daily. We are both retired and I have no escape. Enjoy your time at work. We all feel overwhelmed.
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so sorry. Hugs. 💜
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Trapped, that’s how I feel. And angry! Angry that our marriage has been stolen from us by this hideous disease. It takes more and more away every day. Exhausted too. Exhausted from his constant calling out. Let’s go! Mom! Mother! I wonder if other husbands call their wives mother/mom. It’s a constant all day, every day. It’s so hard for me to remember that it’s the disease and not him. It sure looks like him, but doesn’t behave like him. He was so smart and capable, always had excellent advise for my problems. It’s unbelievable that that’s not him anymore. It’s all so exhausting and overwhelming. Too exhausted to list the reasons why it’s exhausting.
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DH calls me Mama, or calls me by his sister's name. Yesterday I heard Grandma for the first time. Heartbreaking
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I miss my best friend. He’s who I would turn to for venting, advice, conversation and so much more.
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I so relate to what you said about it looking like him but doesn't behave like him. Sometimes when I look at my DH of 47 years and he looks the same, then he speaks or behaves in a way he never would and I feel like he is joking - my brain truly can't seem to comprehend what this awful disease has done to my DH. I also feel the huge loss daily of not just my DH but our marriage and my life/plans/future. Just never in a million years ever would have imagined this happening…
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venting helps; we hear you. (((HUGS)))
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We understand. Some have it worse than others. The grass is greener on the other side it seems, but no one here has any green grass. We all carry this dementia crucifix. There are so many days I just don't think I could carry on. But this forum saved me, literally. (Among so many wise posters, most important was I got my DPOA and Trust done based on others' advice. Never even heard of these official documents, let alone that I needed them.) I hope you'll get some help and get a break. Come here to vent as often as you need. We're here. We understand.
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@mrsdee13
I'm sorry for what you are going through.
Is he seeing (an hallucination) the people stealing from him or is this more of a belief (a delusion) that people are? Are the accusations based on not being able to find something or having has something stolen in the past (conflated memory)? FWIW, my dad had all 3— most of his hallucinations were fairly benign, but his delusions and conflated memories were very ugly and upsetting. YMMV.
I was surprised no one mentioned medication. There are medications that can help dial back the anxiety and agitation driving the anger and even help to a degree with the delusions so you're not walking on eggshells. A geriatric psychiatrist is the specialist most qualified to prescribe and monitor these kinds of medications, but a neurologist or PCP may be willing to write something. Dad could showtime during his appointments, so I sent his geri psych videos of dad during one of his blistering meltdowns via the patient portal.
Medication didn't sedate him. It was just enough to take the edge off and make it so redirection and distraction could keep a dark mood from taking over the house.
HB2 -
Tonyac2
My DH calls me "mom" all the time and it is aggrivating to me. Sometimes I just want to scream "Im not your mother", but I dont.
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Mrsdee13 We all know its not their fault, its the disease, but that doesnt seem to make it any easier for us. Its like living in a bad dream that you cant wake up from. Sending hugs and prayers.
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Thanks, HB, and everyone. He sees people who don't harm or frustrate him. He is on Donprezil, but it's not helping, so his Neurologist advised me to let him get off after he completes this dosage. She did recommend a different medication, but she hasn't seen him in 8 months. He's been referred to a geriatric psychologist, and his appointment isn't until August. He sundowns frequently, his mobility is declining, and his memory continues to decline. Why are there so few resources and medications to help these individuals and their families? He also refuses to see his physicians as needed. I can't make him go. Can't seem to get a handle on how to deal with this disease.
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This will be a bit of a rant, so be warned!
You asked the most compelling question -
Why are there so few resources and medications to help these individuals and their families?
For the 7+ years I've been on this painful journey with my DH, I've been stunned by the lack of help, support and care from doctors of all types, not to mention social/community services, friends, family, etc. When my DH was 65, I got him into his PCP for a Welcome to Medicare appointment. They gave him the "draw a clock face" test, which he failed. His doc's response? "Your memory is terrible! Make an appointment with a Neurologist and get an MRI - I can't believe how bad your memory has gotten!" Fortunately I was with him, but what a bizarre reaction. Next up, the neurologist at a big, Seattle research hospital requested he get a PET scan to see whether he qualified for the new meds. I had taken away his keys as he was totally unable to navigate roads, understand traffic lights and deal with traffic in any way. The doctor gave him driving directions and told HIM (not me) where to park and not to take an anti anxiety med until after he arrived. What was she thinking? Later, more recently, I've had to fight for meds for agitation and frightening delusions and hallucinations that terrify him. Finally got a new doctor to prescribe some meds that gave him relief - but the doc connected to our memory care removed them without telling me because they "could be addictive". He then ended up in the ER because of being terrified of large holes opening in the floor. Not a helpful decision by the doctor to stop the medications he was taking…
My life savings is going to memory care, as I can't keep him in the house, or get him to sleep, or not think I'm a dangerous intruder. After both of us working and paying into all the systems, how odd that this disease and the help needed for individuals and families is not "eligible" for any financial support! Yes - Medicare pays for normal medical help, but the eye watering cost of long term care - which truly some unlucky folks actually need to stay safe and/or keep their families safe - is expected to be covered by private pay. Totally unrealistic for nearly everyone. The sad ways those of us who don't have a choice find to pay for it would fill a book. On top of all of this, we caregivers navigate the social weirdness of a spouse with dementia - no one feels very comfortable dealing with us or our LOWD, as we are a grim reminder of what could happen. People would rather not see it. I think the blame the victim mentality is how people cope with the idea of Alzheimer's, which results in it not being a high priority for anyone to support. "If only your DH had done more puzzles, or gotten more sleep! then this wouldn't have happened." (BTW - My DH did Sudoku, learned languages as an adult, read widely and built boats in our garage). Because PWD brought it on themselves, people think that they can avoid it. This leaves us, the caregivers and those who love our dear persons with dementia, without the resources we need to cope, to help and to survive. I cringe every time the paper publishes a new article like "Here's how to improve your brain health!" as if a bit more broccoli and more playdates with grandkids could keep this horrible illness at bay.
Add to all of this the grief we are all processing in slow motion, and you get us - exhausted, getting poorer, lonely for our partners, and seeing no end in sight.
Sorry for the rant, but as time goes on, it feels more and more like the calvary really is not coming - sure wish I knew how to change this for all of us!
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Is the referral for a geriatric psychiatrist or geriatric psychologist? Typically, the latter (usually a Psy D or PhD) does the cognitive testing which can be helpful in diagnosing what kind of dementia is present while the former is a medical doctor who can prescribe medication.
HB0 -
my DH sees the ads in TV about meds to increase your memory like prevagen. He always asks why can’t I take that. Well it’s expensive and we did try it early on and it didn’t help. But he doesn’t remember that so why can’t he try it again.
@mrsdee13
If the people don’t scare him or upset him just go along with it. Ask what they want. If he wants them gone tell him to let them know it’s time to go. If he asks you who they are just say I don’t know them do you know who they are. I guess if they are not agitating him just step into his “world”.
Also, it’s ok to get anxiety and or depression medication for you as well.0 -
Oh how angry and despondent I too feel today. Im exhausted the sweetest of DH's and oh so intelligent, always with a creative answer to any question and an intelligent view on most things. Reduced to slowly creeping around the house with no interest and nothing to do, cannot work the TV remote, the kettle, toaster etc. I've found the vacuum cleaner is a great tool that makes him feel useful. No understanding of money or time and now I have to think for him when I offer a coffee, tea or milkshake; it really is exhausting. His Aphasia is so bad conversation has almost finished. I cry.
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You are correct. I always go along with him. I always say, " I'm not sure, or I think it's my cousin's or niece's friend. I have asked him several times if he talks with him, and he usually says, Not really. He listens. I said, 'Why don't you ask them why they are here?' He never has an answer. I'm not too concerned with his delusions or hallucinations; it's just draining. He's not sure what the conversations are, but he listens. I do take a low dose of anxiety medication, and I have therapy sessions at least once a month. Yes, all I can do is deal with him where he is and try to meet him in his reality. Thanks for the advice.
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Yes, I have read it, and it makes a lot of sense. No, the cavalry is not coming. WE are it. I understand, but it's still challenging. I think we all desire more normacy. The comments and suggestions are greatly appreciated.
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I could have written this, I wish I could help you. I believe this disease is worse on the spouse. I too try to find joy each day, pray for help and guidance, and am slipping farther and farther into illness myself. I bounce between being the best spouse I can be, to wanting to run to the airport and get on the first plane anywhere, and, looking at a bottle of pills.
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Looking for the exit ramp, escape, that’s me too. I’ve often thought of drinking, taking pills, to take the edge off. I don’t know why I don’t except maybe because I’m all he’s got.
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Trapped is so right and my DH comes out with shorts on in side out and back to front etc and says ok let’s go ….. where to I wonder so I respond with “where shall we go?” I’m so exhausted thinking about stuff, doing stuff and trying to be creative with MY life. I sit and silently weep 😢
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((HUGS))
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Sending hugs. I am sorry that you are going through this. Sorry for you, sorry for me, sorry for everyone who finds the need to be on this site. More hugs.
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I swear by the time we reach Stage 6, my vents will just be primal screams. Gaaaaaaaaaaaah!!
2
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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