Son making me feel guilty!!!
DH had AD 6 years now and have handled everything all by myself. He is on Trazadone for nighttime and Diazepam for agitation for day. My son feels he is getting worse because of the medication. I feel his dementia is just getting worse. He no longer has interest in TV. For 2 months now he wants to go home and questions all day every day when are we going to leave. Even if we go somewhere for a couple of hours and come home it starts up again. He does not have UTI. When he talks he doesn't make sense sometimes. He seems very weak. Only gave him a 10 mg. melatonin last night, he was up in an hour getting dressed. Gave him Trazadone at 8:30pm and 2:30am he was up diaper full of pee and he was putting on 5 T shirts. At 10:00am this morning I only gave him 4mg of Diazepam which he can have every 6 hours because he was showing some agitation. It is 6:14pm and I haven't given him any medication sense and he still seems like he's on a lot of medication. I emailed my doctor what my son said. My son feels if I put him in a memory care facility that will make him deteriorate, which makes me feel good! My son sees us about 6 times a year and lives 45 minutes away and oh, he knows what I'm going through.
Comments
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I am so sorry you have this added pressure. All I can say is that YOU know the day to day ups and downs with your DH. Someone else who is not living it cannot possibly know what is best. Trust yourself—you make the decisions out of love and caring. You shouldn’t feel guilty EVER!
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it is so hard doing what we do, but add a relative who questions our decisions (no matter how good their intentions) makes things so much worse. I am not going through what you are, but my heart truly goes out to you! We can only follow our gut with all these decisions about medications and everything else. Please don’t be hard on yourself, and continue to make decisions that YOU FEEL is in the best interest of your DH and your best interest also. You are doing your best!
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Amazing how many armchair quarterbacks there are out there, watching the big dementia game from the sidelines and thinking they know how to call the plays. I consider myself fortunate that at this point my family and friends offer support, but refrain from telling me what to do and how to do it. Early on my sister tried that. I got out my calendar, told her I needed a vacation from 24/7 caregiving and asked if I should expect her to be here to take care of DH next week, or was the week after better for her? I was serious. She was silent. Haven’t had a problem from her since.
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Hi avie, there are probably other medications that could help more than trazodone or diazepam- diazepam is Valium, which has a very long half life and probably should be avoided in people with dementia and in the elderr, in general. The atypical antipsychotics like Seroquel or Risperdal would probably work much better and would also help him sleep. If his doc is not willing to prescribe these i would ask for a referral to a geriatric psychiatrist.
I'm sure your son means well, but his opinions are not worth much here.
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He was on seroquel which caused more agitation.
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Love it!!! 👍 I can never win with a conversation with my only child son because you know he knows more about things than me. Maybe it’s good I only see the family 6 times a year. I have 3 grand kids 20, 17, & 11 & they can’t even bother to send me a text.
I have done so much for my son & his family too! When my parents & in-laws were alive my DH & I saw them almost every weekend & our son was always involved in some kind of sport.3 -
Thank you, been crying a lot because not sure what the right decision is. I have no other family to give me support. Always wanted an older brother!
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My philosophy is, "no workee, no votee." If you're doing the work, you call the shots. If someone undermines your decisions they get the "fine, fine" after that. No use giving them ammunition when they're not supportive.
The right decision is to work with your provider to make medication decisions. If you have POA the decision to place him is made by you. Memory care does not make brain function deteriorate, that's a dumb idea. Memory care provides a safe environment, 24/7 care, and appropriate socialization.
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Thank you, yes guilt is always on my mind. My DH & I have been married 55 years, high school sweethearts. We have been retired 21 years, 15 good years before the dementia. Ya never know when something bad like this will affect your lives. He tells me everyday he loves me & 95% of the time it’s not me!
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Armchair quarterback, perfect description! Your son means well, but he’s unable to accept that his father has dementia. It must frighten him to see his father this way. So he wants to find a reason other than the truth. Make an appointment for your DH with your primary doctor and tell your son to come with you. Give him the opportunity to say what he thinks and then let the doctor straighten him out. I would certainly make notes about the med changes M1 suggested. Worth discussing while you’re there.
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Yes there are adverse reactions to Seroquel-but i would keep asking and keep trying. This is where a geriattic psychiatrist caebe invaluable....
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I bet your son wouldn't be able to last a night with his dad. You should ask him to stay with him for a weekend so you can get away for a break from caregiving. I'd be interested to hear what he says to that!
You're with your husband all the time and know what's going on. Your husband's lucky to have you looking out for him. When caring for him alone gets to be too difficult, then it's ok to move him into care. You can't be available 24/7, you need to sleep and take care of yourself too. Even if your family were helping you, you'd still be doing all the heavy lifting, and so you're the one who gets to decide if and when the time is right. I'm sorry that your son is making you doubt yourself—as if you needed more stress…
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avie, I am sorry for what is happening and can imagine how seriously difficult this is. You need the best care and advice especially now that things have reached this point. I am with M1 on this one.
Your Loved One, (LO), is in a complicated situation and the meds are possibly not the best choices for what exists. Does your LO have a Geriatric Psychiatrist or other dementia specialist? If not, it would probably be a game changer and helpful to have such a specialist to attend your husband. It is also a quality of life issue for the both of you and you both deserve to have more peace within your lives.
Adequate medication and treatment plan can be a game changer and incorrect meds can significantly add to problems. Having a dementia specialist can be a quality of life issue. Just a thought.
Your son is very concerned as he best can. None of us are dementia specialists and he is thinking along the terms of what he knows. That he cares is a plus. Getting that dementia specialist could be a significant game changer as that specialist is best able to serve the patient and family appropriately with correct meds and adjust as needed as the condition evolves.
Please know that we truly do care; it is sad that you and your LOs are in the midst of an unruly situation which may well be able to be managed a bit more helpfully for all of you.
It may be a good idea to follow along with M1's input and give that a chance. It may make a huge difference in your lives. To simply place your husband in a care facility without addressing his possible med adjustment needs would probably not be a kindness for him. Having "deterioration" does not always mean shortening life - it can sometimes mean a deterioration of symptoms and behaviors and living with the negative outcomes which would be a dreadful situation for your Loved One and all family. If you can get a dementia specialist to assess the condition and dynamics, that would be a starting point in moving forward in whatever way is best for everyone.
Let us know how you are; it is a significant difficult set of dynamics; so hope that additional help will be able to be obtained. You are trying your very best under extremely difficult circumstances and hanging on as best can, that must be very difficult; you are amazing in all your effort.
J.
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No matter how well meaning our children are, unless they are with the LO 24/7 they simply don't understand what is going on. My daughter, who is really trying to be helpful, is starting to annoy the daylights out of me with her daily suggestions .
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I thought Seroquel caused problems for my husband, too, but in hindsight I think it was because it was given at night along with Trazodone. He wound up in a sleepwalking state that was as frightening as the dementia itself. His new neurologist prescribed light doses during the day (25mg at a time) which seemed to take the edge off without doping him too much.
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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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