DH is currently independent in self care
My DH was officially diagnosed with early stage Alzheimer’s. I find it’s easier to talk less and less since most things I say are doubted, challenged, questioned and I have to explain and repeat.His talking about what will probably go wrong, like when our daughter plans to meet us, saps my energy and spirit.
Also wearing is his increased irritability toward me.He literally calls me repeatedly when we’re both home to ask where I am—-if I’m not in same room with him—and what I’m doing.I am aware and appreciative of his independent self care in showering, dressing, eating, driving but I need more time away to interact with fully functioning people. I also feel guilty in wanting time away because I know these relatively good times for him won’t last. I sometimes feel I’m wearing out.
I am enormously grateful to have this place to write my true struggles and feelings.
Comments
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PS67, I could sign my name to your post. This is exactly how I feel. My DH is good as long as I do not argue, challenge, rush him, etc.
My DH has a diagnosis of MCI, but feel he may be early stage. My DH I can still leave for short periods of time to run to store, errands, or a walk. While I feel guilty, some days I feel so lonely and miss doing things outside of home.
We got started doing puzzles a few months ago. He loves working on them and it does give me a break and something he can do while I am gone. Is there anything he could do game, coloring books, etc.
Wish I could be more help. I think to myself it is so difficult, but being alone will not be easy either. He is 78 and I am 74.
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Welcome to the forum, you have come to a good place for advice and support.
The anxiety and irritability you are describing are quite common, and he may benefit from medication to help with this, you should definitely tell his docs about it and how it is wearing on you. The increased dependence on you is also common and is called shadowing, he is relying on you to scaffold him as his abilities decrease.
He almost certainly should not be driving. This is a very hot button issue, but very important. There are lots of threads on this topic.
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Thanks for your reply and sharing. It means a lot to me.
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What are the signs that he shouldn’t be driving?, and how do I go about getting him to stop? He is not under a neurologist’s care. Unfortunately the one neurologist he saw was a negative experience.Our primary doc is a good hearted person but not proactive.
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Just simply having a diagnosis of Alzheimer's is enough to say he shouldn't be driving. You take the keys and/or get rid of the car, disable it. Like i mentioned, this is a very, very hot button topic, but think about this: if he were in an accident, even a minor one, and had to testify to what happened, could he remember the details to accurately report to an insurance adjuster and/or a court of law? You could be sued for everything you have. Definitely bring it up with his doc. But most don't give up willingly, and it's up to family to enforce, which is quite hard. You might find out if your state has a way of reporting an unsafe driver to the DMV anonymously.
My partner got lost mutliple times and then had a fender bender in a parking lot before she gave up driving; I was not with her and did not witness it. She had to go to court, and I was working at the time and could not accompany her. She drove herself to the court building (I helped her by getting directions ahead of time). But that's all she did: she didn't realize that she had to actually go into a hearing, etc. So she was listed as a no-show. Several weeks later we got a letter that she was about to lose her license. In retrospect I should have let it happen, but I didn't; I was still unaware of how bad her impairment was at the time. We paid whatever fine was imposed. Driving continued to be a contentious issue, and I ultimately had to hide all the keys. My not letting her drive was the issue that caused her to threaten me physically and landed her in a psych hospital and then in memory care over two years ago.
Do you hold durable power of attorney for him for healthcare and finances? You may need it, and if this hasn't been specified, talk to a certified elder law attorney about getting the appropriate documents in place (look at nelf.org for lists of these attorneys by location). The sad truth is that you cannot expect him to have the judgement to do the safe and appropriate thing any more. You have to do it for him, and safety has to drive the decision making (pun intended).
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@PS67
Your DH sounds a lot like my dad. He even did that "passive shadowing" where he was too lazy to actually get up and physically follow her, so she had to stop what she was doing and come to him. At this point he was too apathetic to go along with an activity she suggested, unable to entertain himself and had zero empathy for her at all. In fact, he once told me he was miserable stuck "here" (I moved them near me, he wanted to be in FL where he could wear mom down into letting him do as he wished unlike me) and was going to do what he could to make mom miserable too.
Meds might help. Irritability, in males especially, is often a symptom of depression. He negativity could be anxiety at work. Meds can help dial that down. Dad was on a cocktail of meds that allowed him to remain at home until weeks before he died.
Meds could help you, too. One of the first things I did when I moved my parents was to set up medical care. I included a psychiatrist and talk therapist for mom right away. She felt hopelessly trapped in the situation. Having them reinforcing the message that she mattered and that the time away to do something that feeds her soul was critical in this marathon helped a lot.
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Hugely helpful info, M1. Thank you. As to Durable Power of Attorney….I read in the book, “The 36-Hour Day”, reco by a gerontologist, that a first step after Alz Dx is to get Medical & Financial Power of Attorney. After getting a recommendation from a friend who worked in financial field and who my DH trusts, I made appointment with reco attorney for updated will, and Durable Powers of Attorney. My DH refused to go saying he had to study it more. I told him the Financial PoA would allow me to access funds to pay for care that Medicare might not cover. That did not convince him.
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My independent interaction/socializing is basically limited to my Morning Walks, a monthly book club, and also 1X month poetry reading group. Each time my DH asks what time I’ll be home, which I have no objection to, but he gets agitated, and sometimes argumentative/hostile about the amount of time I’ll be away. He is safe alone at home.
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Thanks, HB. I agree that anger/irritability could be signs of fear and depression…very helpful idea that anti anxiety med might make his, and my, life easier. You’ve inspired me to strategize to, hopefully, make that happen.
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find an experienced attorney to help you, the good ones know how to talk to people to get them to sign, and don’t try to reason with him about why. Alternately, if you have children, perhaps you could set it up to give POA to someone younger for both of you. Not a bad idea, especially as backup should something happen to you (unfortunately a large percentage of caregivers die before their loved ones). Someone besides him should hold your POA in any event (and be executor on your will).
This is worth the effort. If not accomplished, you could end up in the much more difficult circumstance of having to sue for guardianship. You can’t take it for granted that he’s going to cooperate.
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Your husband is anxious when he doesn't know where you are. You are his anchor to reality now. Leaving him alone is no longer an option. I got my husband to go to an attorney by telling him that "we" were getting "our" affairs in order so our kids wouldn't have to worry if something happened to either one of us. I also got my DPOA done naming my daughter. & son. He never questioned it. I never told my husband he had Alzheimer's or Dementia. Those words scared him.
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M1, thanks so much for your reply. Another trusted friend reco a different local attorney who offers a free intro zoom meeting. My DH found fault with that, but I will bring it up again as a “new” idea. These discussions are invaluable. I’ve learned to not refer to previous “discussions”. Just yesterday I brought up idea that I could die first, and also realized my(our) devoted dtr who lives ~hour and a half away would step up to be my legal designated decider.
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SDianeL, good idea. Referring to relieving dtr’s worries by getting DPOA might work. My DH still carries on rational telephone conversations, with needed repeats.
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Copied from harshedbuzz above:
"…Your DH sounds a lot like my dad. He even did that "passive shadowing" where he was too lazy to actually get up and physically follow her, so she had to stop what she was doing and come to him. At this point he was too apathetic to go along with an activity she suggested, unable to entertain himself and had zero empathy for her at all. …
Meds might help. Irritability, in males especially, is often a symptom of depression. He negativity could be anxiety at work. Meds can help dial that down. …"
We just came home from an appt. with the geriatric psych (awesome guy, wish you could all have someone like him in your world) and when I described almost exactly what you say here, he suggested increasing her escitalopram and possibly also increasing memantine further if the other isn't enough. He thinks that will help with the irritability, anxiety and inappropriate social behavior. We sat in traffic for 45 minutes on the way to the appt and she showed a side he hadn't seen before :-)
Thanks to all of you who offer ways to describe the things we're seeing in a way that cuts to the chase with providers!
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I will look for a Geriatric Psychologist in my area. Thanks so much, HollyBerry.
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I am new to this forum but was encouraged by my daughter to try it. My husband was diagnosed 3 years ago and am grateful he still functions well with the medications he is on. However we just got back from an Alaskan sea and land vacation and it was not an easy trip. He became quite combative at the airport and all thru the trip was not a kind man. This will be our last big trip, I can’t do it anymore and that makes me so sad. It’s like traveling with a 4 yr old with temper tantrums. I’m exhausted with having to do it all. Are any of you as tired as I am at people never asking how we(the care giver) is doing? It’s always “how’s Jim doing?” Am at a point where I just want to run away. I will say that I do play pickleball and it’s a great way to just feel normal for a couple hours. Jim does fine while at home and around familiar things. Thank you for giving me a space to vent a bit. Btw. I’m 74, he’s 79.
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I play pickleball too, but have had to pretty much give it up…if I go by myself he complains for days and if I take him it is absolutely no fun…he used to be a very skilled player but now can't keep score or remember some of the rules of the game. No one in the pickleball group knows about his diagnosis so I spend all of my time covering for him. Might try to go once a week to play in a 'woman's only group' and see if he accepts that. We don't travel anymore either for the same reasons you described…absolutely no fun and lots of work and stress. I often consider running away too, but my sense of obligation won't allow it. ugh…
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Welcome C&D Grandma. I’m pretty new to this forum and it’s my Go-To place to offset the isolation, frustration that’s part of my everyday life. You, and Bailey’s mom…..I too feel like running away but after decades together, I just can’t. Sorry to say every day is hard, and my DH is at Early Stage Alz. Again and again, I’m grateful for everyone who participates and shares here.
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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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