What to do. Need a sounding board
My DH was diagnosed about two years ago. He is on two meds to slow it down. But is on a slew of other medications also. I did take over making the pill packs about 3or 4 weeks ago. On top of that he is an alcoholic and the neurologist advised him no more than two beers at a time. Not happening. He drinks when and where he wants to. So evenings can get very dicey as far as whether it will be a good night or a bad one. Things can escalate quickly if I don’t pay close attention. He is having issues with phones, computers, and passwords. Which is heartbreaking because he is a general contractor for over 40+ years. (He is also still trying to work even though he is on ssn)
He is 12years older than I am (I am only 60 this year). I unfortunately have come to the conclusion that I love him still but am not in love with him. I have stuck with him through his cancer diagnosis back in 2011 and he is in remission now. He shut me out back then I guess he thought he was protecting me. But it hurt as I wasn’t allowed to go to either radiation treatments or chemotherapy treatments. I felt like I wasn’t being a very good wife at the time.
I have been reading a lot of the posts on here and see this group as very supportive for the most part. His DD thinks a Christian counselor could help but I am not so sure. We are very involved in our church and have a strong group there..
I also work full time so things can also get hairy when he starts having issues with phone, computer etc and starts calling me at work. Unfortunately sometimes I can’t explain over the phone how to fix whatever needs fixed.
Thanks for letting me vent
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Hi Sherry, sorry you are facing this. All situations are complicated. Loss of technology skills is a common early symptom. There are likely huge liability issues with his continuing to work (my partner was a custom contractor too). Does he have partners or friends you can consult on that front? A banker or insurer? They will have likely noticed the issues too, and it may take an intervention like not renewing his insurance to force that issue. If you do not have power of attorney for him, you need to consult a certified elder law attorney about getting it. Look at nelf.org.
good luck, I'm sure others will respond also. I was fortunate my partner was willing to retire, she was also in her early seventies at the time.
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Welcome, Sherry. My advice would be to take a week or so personal time to get yourself organized. Your life has already become chaotic and out of control. You need to make plans and you need information to make good decisions. You need to get your legal and financial affairs in order. Is he driving? Is he using tools? M1 advised about an elder attorney. Read a lot of threads, also alz.org and Understanding the Dementia Experience. Become aware of anosognosia, being unaware of having dementia. You will have to learn new ways of communicating. Everything will be hard, but the members will help you. There are many threads on alcohol use/abuse. BTW, cancer chemotherapy can contribute to dementia.
Iris
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Sherry Dearth wrote:
My DH was diagnosed about two years ago. He is on two meds to slow it down. But is on a slew of other medications also. I did take over making the pill packs about 3or 4 weeks ago. On top of that he is an alcoholic and the neurologist advised him no more than two beers at a time. Not happening.
Hi and welcome. I am sorry you have a reason to be here but glad you found this place.
I am not a spouse, but I do have some experience with the combination of dementia and alcohol as an adult child caregiver. How much does he actually drink? Alcohol is a neurotoxin, and at consistently higher levels can trigger certain alcohol-related dementias. Did the neurologist specifically rule this out? I ask because one of the more common ones is to a degree reversible with IV Thiamine and an abstinent lifestyle. When my dad was diagnosed and treated he improved measurably for a time; he also had Alzheimer's so there was no happy-ending possible and he refused to maintain sobriety. At this point, his reasoning skills and anosognosia where such that he could not make choices in the context of understanding consequences.
He drinks when and where he wants to. So evenings can get very dicey as far as whether it will be a good night or a bad one. Things can escalate quickly if I don’t pay close attention.
What does this mean? Are you dealing with agitation or aggression? Are you concerned for your personal safety? If so, you need to take steps today to keep yourself safe. This would include removing guns, knives and any object that could be weaponized as well as having a phone on your person at all times and a room you can lock with an egress to the outside.
If he's very agitated, one option would be to have him transported to a geripsych unit via the ER for a stay to get meds on board to stabilize him and safely detox him if appropriate. Your area agency on aging or his neurologist's office should be able to tell you which hospital in your area has this service.
He is having issues with phones, computers, and passwords. Which is heartbreaking because he is a general contractor for over 40+ years. (He is also still trying to work even though he is on ssn)
We had this with dad, too. He lost the ability to use devices fairly early on. Dad had had an in-home computer for his business as early as 1986, so it wasn't as if he was a late-adopter (memory loss is generally LIFO). Initially he blamed the devices and bought new laptops and phones. Passwords were an issue, too. It was a blessing when he finally forgot because he managed to day-trade away much of their retirement savings-- that's $350K that would have been useful in paying for his care. I am of the somewhat unpopular opinion that PWD should not be able to access the internet without supervision as there are too many ways for them to be taken advantage of.
I would be concerned about him working. There are so many ways this could go sideways and result in legal consequences. Additionally, he may no longer be safe around power tools. There may be tax consequences as well.He is 12years older than I am (I am only 60 this year). I unfortunately have come to the conclusion that I love him still but am not in love with him. I have stuck with him through his cancer diagnosis back in 2011 and he is in remission now. He shut me out back then I guess he thought he was protecting me. But it hurt as I wasn’t allowed to go to either radiation treatments or chemotherapy treatments. I felt like I wasn’t being a very good wife at the time.
I have been reading a lot of the posts on here and see this group as very supportive for the most part. His DD thinks a Christian counselor could help but I am not so sure. We are very involved in our church and have a strong group there..
I am glad you have a supportive church home. If your DH has a dementia diagnosis, he is likely beyond the cognition required to benefit from talk therapy. He's probably also past being able to choose and maintain sobriety. Dementia generally presents with apathy, a loss of empathy, short term memory loss, poor executive function and anosognosia leaving a PWD unable to do the work of therapy. You might benefit from having a professional to talk with. I personally wouldn't limit my search to those who have a Christian perspective; it can be hard to find a good fit so why limit your options.
You didn't mention this, but do you have the legal documents in place to act on his behalf as DPOA going forward? Do you know where your assets and investments are? You need to secure these things and remove your DH's access asap. It sounds like he has an adult child(ren)? Is you marriage something they will respect in terms of your decision making or will they want to second-guess you and interfere?I also work full time so things can also get hairy when he starts having issues with phone, computer etc and starts calling me at work. Unfortunately sometimes I can’t explain over the phone how to fix whatever needs fixed.
I would remove access. It can only lead to trouble. I would change the wifi password and create a fiblet that the ISP is working in the area on an upgrade when you aren't there to supervise.Thanks for letting me vent
HB
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Hi Sherry. Welcome to the forums, but sorry you need them. As you have probably noticed, you will get a lot of help and understanding here.
You have some excellent replies above. I'd just like to comment on what I think are the most important things in the replies. Consulting with a CELA (certified elder law attorney) is critical, and should be done ASAP. If you need help in getting him to go, ask us for tips. And stopping his access to the internet is also very important. If you don't know how to change the wifi password, do a google search. It is not complicated. Failure to do either of these things could really cost you a LOT of money.
Here is a link to the excellent article mentioned by Iris. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf
My wife had the same problems with technology that your husband is having. It wasn't long after that began when she couldn't write a check, or do basic math. She went to a garden center to buy some plants, but when it came time to pay for them, she couldn't write the check, and allowed the woman (the owner) behind the counter to write it for her. Then she signed it. Thankfully we had been dealing with this garden center for years, and the woman knew her, so there was no problem. This disease will present many opportunities for you to lose some or all of your assets, so it has now fallen on your shoulders to make sure this does not happen. It is difficult, but it can be done. Stay safe!
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Thanks. Good news is he is just telling people what to do and watching over the job. Plus all local people that know him. But yes still driving
He knows he has it but has decided he wants to be as active as possible. Which his doctor agrees with. I did tell him we need to get POA set up soon. I have access to everything else but am concerned about the property as it is in both of our names.
I feel that the Covid vaccines also contribute as he went downhill faster after taking the first doses. But could be wrong
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Thanks for this information also! Y’all are awesome!
He only has access to his bank accounts not to mine or my investments. So I guess that’s a plus. I agree with you about the therapist. He is not even remotely interested in quitting drinking for any period of time. DR has him on both Thiamine and the Folic Acid along with his ALZ meds.
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Thanks! Definitely will be checking on the cela as soon as possible
Happy to hear your wife worked out the hard stuff with you! Praying my DH will as well
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HP. Thanks for the concern. No he is not physical but Definitely verbal especially when drinking. Nothing I do or say is right when DH gets something in his head. Mornings are much better. Trying to find a good time to bring up CELP. He kind of freaked when I said something about putting the property in a trust last weekend. Thought I was not going to consult him. Like I told him that was why I was talking to him about it.
I know this will all work out for the good of all but it is very nerve racking right now
He was at the store this morning and I called to remind him to get a birthday card for his grandson. He was asking if he was the youngest. Scared me. I told him no the middle one and he was like “oh ok the chunky one”. I said no remember he lost a lot of weight. Then he said oh ok my fishing buddy. This is a first
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It is shocking when they lose track of the family members but very, very real. These things may come and go for a while but then intensify, sadly. Have you reported the verbal abuse to his doctor? You probably should. Difficult but necessary.1
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M1. Has appointment with neurologist in July so will definitely update him.
I told DH yesterday he wasn’t happy with yes or no answers but didn’t want my explanations of why I did something or why he needs to do something. I don’t know what to tell him anymore. Again more in afternoon or evening when he is drinking so I am sure that is a huge factor in itself. So glad he only drinks beer. But he tries to hide it in the early daytime on the weekends. We have a quanson (sp) building out back where he like to go.
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DD says don’t worry about CELA now. Work on our relationship. No idea what to do next1
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Dear Sherry,
I am praying for you for wisdom and strength through this. The members of this forum are extremely knowledgeable about what to do. Please protect yourself and listen to their advice in all matters from financial, legal, personal security, driving and your mental health.
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Sherry…..I can’t offer any more than the sound advice that has been given….keep asking questions and sharing when you need to…the people here really care ….sending prayers.
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Thank you. I am trying to figure out exactly how to use this site so might take me a little bit. Thank you for the prayers. They really help.
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Had a good evening the other day so thought I would ask him about going to see a CEL. That didn’t go over well. With no support from his daughter on this matter I am not quite sure how to move forward. Any advice?
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Could you say a fib about “apparently it’s standard practice that our PCP contacts a CEL to assist in estate planning after a diagnosis” Or something that puts it in a perspective of “we’re being guided and must take care of things with their professional legal help so we can make sound decisions for our future”? You have to remove yourself as a target.
Regarding other peoples opinion on what you should be focusing on, even DD, outsiders do not have even close to an understanding of the magnitude of the situation. Your instinct guides you on what needs to be taken care of,,,what makes you nervous when you have a moment to think alone….those are the things that need to be addressed. Get things under control that you can control, cause there’s going to be a whole lot that can’t be. As far as what to say to well-meaning people in your life that insist on giving their opinion when not asked, “thank you for thinking about us, I’m open to ideas, and I appreciate that you respect my decisions, as I will of yours if you should ever face this too”
Lastly, i have found everything is a phase,,,some of them painstakingly long. For instance, drinking too much…as they lose impulse control and gain inability to track time….if it is available it will be drank and probably quickly. When driving stops (another thing to “put on” a DR instead of you, they can “require” a driving test. It’s an incredible loss of freedom BUT you could be financially stripped of everything if an accident happened. I’m sorry, but sometimes we get scared enough to do what we’re afraid to do. I did) anyway, if he can’t drive then access to restocking the beer isn’t up to him, you can buy it for or with him and start to hide it and slide a few in frig, he’ll start to forget to ask for it, and the use declines and one day you’ll realize that he’s not fixated on it and his body & mind aren’t constantly in pursuit of it :-)
Knowing things are temporary is both awful and a relief. Take care of what you can and should so that you can prepare for the hard times and feel relieved that there will be good times.
All the best.
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You cannot successfully work on a relationship with a person who can no longer understand logic and whose emotions are also failing. A counselor will not be able to help much as your spouse won’t remember the discussions or be able to follow the directions given for ‘homework’. I think his DD is in denial. It sounds as if she just wants to chalk it up to marital issues rather than an uncurable physical illness.
Please follow one of the links posted in various threads to a free guide called Understanding the dementia Experience( you should be able to find it on the internet directly also). Also buy 2 copies of the book ‘The 36 hour day’. One for you and one for his daughter. This should give your daughter more understanding and possibly allow you to discuss his situation better.
You really do need to get your financial situation in order. Instead of suggesting a CELA, suggest you both get your financial and medical POAs done and a will drawn up. You can suggest that the POAs are to help in the care of an unforeseen emergency. If you can’t get him to an attorney, both the POAs could be done by printing a form of your state’s dept of aging with signatures done in front of a notary. You can revoke the POA giving someone authority over your affairs afterward. Try hard to get yourself named as his POA rather than his DD.
You have found a good place here for advice, support and venting. Please feel free to be honest here with your thoughts and frustrations with him and others. That’s what we are here for.
Edited to acknowledge DD is his daughter, not theirs.
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Hi Sherry. Thank you for sharing your thoughts here. You have a lot of good company on these boards, and you're not alone. Your words bring up a lot for me today. As I attempt to share some of my experience I hope you might find it supportive in some way.
The drinking is tricky and complicates things. I'm sorry you have that to deal with too. My husband - diagnosed with Fronto Temporal Dementia several years ago, slow progression, still early stages - also drinks every day, and is on meds such that the doctors told him he should not drink at all. I understand your concerns. I don't have answers, but I do have coping tools. I'm a long-time attendee of a specific support group and am grateful it sees me through this dementia journey also.
In another effort at improved self care, I've looked a long time for a good grief/dementia counselor and finally found one in the past year. It has been so helpful in many ways, improving my own quality of life, increasing my resilience in coping on this rough journey.
About the practical matters: Any person in the world needs to have their legal affairs in order. Some of us just put it off longer than others. It's a wise and responsible adult thing to do, consulting an attorney to get POA's, medical directives and finances in order. Taking care of business at any stage in life equals valuable peace of mind. It becomes imperative now.
It depends on where your loved one (LO) is in the disease process for how to proceed, so I don't know if any of this is helpful. I'll mention it just in case some of it might apply. ... I "planted seeds" over time with my husband instead of suddenly leaping into it. He seemed to do best having a little time to absorb and adjust. Then it was already somewhat normalized for him and he was more receptive, less resistant when the time came. It became something anyone would want to do to ease things for themselves, for each other, and for their family members.
Talking about who you want to use for emergency contacts when filling out any paperwork can be used to segue into further conversation about these topics/issues.
It's common for doctors' to request a copy of your medical POA's, etc., to have on record. That can be a normal avenue used to get started. While you're at it, it only makes sense for the lawyer to take care of all the rest of the needed paperwork.
I don't know if they still provide it, but, my husband's workplace once offerred a legal service discounted for employees. My husband responded well to the idea of saving money and that's how we got started with a lawyer.
Please pardon this tome. Hope you'll overlook what isn't useful. I just want to reach out and let you know there's a lot of support here. Wishing you everything you need to stay as healthy as you can.... ~Helen
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Thanks for the book advice. I am an avid reader so that will be helpful for me also. Great idea to send one to his daughter. I know I found a Dementia devotional journal and was able to share with a couple of friends that had LO with Alzheimer’s and was of help to them also.
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Thanks for your input! Yes I think his DD is totally not accepting it but I don’t think she is worried about inheritance. There isn’t one and she is much better off than we are.
didn’t realize that I could go to CEL by myself but makes sense. I will try that and talk to his DR about maybe making suggestions to him
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Good news at the moment, I approached with a different approach. Said we both need these documents as neither has got them. Also called his pcp who is mine also and told her I need help. He says ok now but we shall see
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Good news, at least he is willing to go see the attorney now. Working to set that up
in the meantime his DD is having anxiety attacks and has advised she needs to keep it under control because it’s causing afib. Sooooo. Guess I’m on my own as far as that goes. I did send her the book 36 Hours although I didn’t put my name on it. Sent direct from Amazon but she hasn’t said anything about it yet. I found that and Creating Moments of Joy by Jolene Brackey had a lot of great tips.
He is getting “mouthy” when drinking and he gets agitated. He hasn’t cursed Like this in ages.
ahhh. Peaceful for the moment as he is asleep in his chair! Take what I can get
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Is this your DD or his?
It sounds a bit like you are being held responsible for that which is broken in the relationship. If this is "Daddy's Girl" you could be in a situation where nothing you do is good enough. Or it could be she is terrified of having to step up should you divorce him making her next in line as caregiver.
I would have seen the CELA by now. It's an hour or two out of your life leaving you plenty of time to do other things. IME, BTDT, working on a "relationship" with a person who is choosing alcohol over the relationship whether because they are addict or because their brain is damaged is not going to result in the positive outcome you desire.
HB
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His DD. She is 40plus yo so not holding me responsible. He was divorced when she was younger. I started several years ago asking her to keep eye on him when he would go up to their place as I thought maybe he was starting to sundown. Of course he’s one that can hide the drinking and everything else from her so I feel she really didn’t take me seriously.
working on the CELA now. Thanks for your input
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I'm glad you're working on the CELA now. That's super important.
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From your post, I have no idea who or what a DD might be, but if you don't get the legal paperwork out of the way NOW, while the legal system might see your husband as capable of making those decisions (will, POA, ect.) you won't have any authority over his care, assets or other major life decisions in the future. Your relationship cannot flourish when you (the healthy partner) are living in no-man's land!
My hubby too is an alcoholic. Four years ago I locked up the alcohol and I am still the only bartender in this house. He gets ONE very watered-down Manhattan each evening and rarely argues with me about it anymore.
Wishing you all the best!
--p
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Thanks for your input. DD is husband’s daughter . Unfortunately hubby is still mobile and working (bossing people around) so no way to lock up the beer. He will just go get more. But I agree we have to get the paperwork done sooner than later
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Does his neurologist know that he is still driving 2 years beyond a dementia diagnosis in the context of his alcohol use?
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Neurologist told him he needed to back off to no more than two beers at a time. But he does what he wants. I am trying to get this under control but there is no flipping control. He just starts screaming at me. It has been a rough evening. He spent 4 hours at the local bar 😳
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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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