I feel like Alice going down the rabbit hole.
I am totally new here. First-day actually. Here goes…. My husband has shown signs of Early Alz. for quite a few years, but I didn't realize what it was until about 2 years ago. He has been on medication and forgets things we just talked about but then he will tell me the store I need is down the street on the left. He will say "I never knew that" yet just 2 seconds ago had the conversation. It is maddening. But more maddening is he is constantly telling me he loves me and how wonderful I am. I can't stand it. Then I feel obligated to say it back. I do love him but not 80 times a day. More crazy is that he tells everyone we meet how wonderful I am over and over again.
He knows he has memory issues, and I know he means it when he tells me how grateful he is for all I do for him. We are moving from CA to TN in 2 months and he has so much STUFF (tools). I could call him a hoarder for tools. Sometimes, he is reasonable about having to get rid of stuff, and then he says Do you know how much that cost? I dont care!!! Throw it away, I tell him. He is 63 yrs old and is not going to build a house. He says that you never know. I am going coo coo. Got all this stuff on me and I am overwhelmed.
I have a highly functioning autistic son who will be graduating HS in a couple of weeks. He will come with me. I have to deal with getting him enrolled in school and everything that comes with moving. My other son will stay in CA. I feel like I am in over my head with all the planning of going across the country and dealing with all his doctor's appointments as well as mine. Anyway, thank you for listening. Sorry if I don't know the protocol and did something I shouldn't. I needed to blow some steam. I don't know how to show patience over and over and over.......I thought I was in a class called Carefree Highway but I wound up on Highway to Hell 101. I don't see an option to drop out. lol
P.S. I have a very sarcastic side; if I joke a little, it lightens the load for a minute,
My name is Gia
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Welcome! Sometimes a bit of sarcasm helps us to cope . My patience is better than in the beginning of our journey . You indeed have a lot going on so give yourself some grace. I hope you feel better after writing your first post , someone is usually always available to respond . Glad you found the forum .
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Welcome swissmiss1… Holy smokes, you do have a lot on your plate. Just know this is a safe place to vent away. Nothing seems to be off limits, so no apologies cause there is no protocol. Others with more knowledge will chime in. For now this is a good place to be cause everyone seems to understand. I know I do, but I hate to say I wish I had some of those I love you’s. My DH is filled with anger, agitation and hate. Just a few hours ago he told me to move out (again and again) Highway to hell is really quite accurate and I love sarcasm and humor too. I wouldn’t be able to survive without humor even tho nobody gets it anymore.💜
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You are right…no one GETS it. Everybody takes everything so personally. Back in the day people weren't so serious about everything. That was pre facebook, where our main focus wasn't posting pictures of our dinner. lol My kids are 17 and 20; when they were smaller, they used to be so in awe that I was born in the 1900's. 1964 to be exact. I would tell them "Do you know that there are people who are older than me? Hard to believe but true." They would look at me and go "Wow" LOL
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Gia, Welcome but sorry you needed to seek out our community. There are lots of great people her with much experience they will freely share. I understand about the tools, we moved when DW was in the early stages. She always collected interesting rocks from a river we frequented to decorate here flower gardens, when we moved she kept insisting we move all her rocks to the new house. I finally had to relent and agreed to take two 5 gallon buckets of rocks with us. Ugh!
Once you get to TN you need to find a Certified Elder Law Attorney (CELA) as soon as possible. It is very important to get your legal and financial house in order under the laws/regulations of your new state, every states rules are different. Putting this off could have disastrous effects down the road if your husband becomes unable to comprehend legal documents and can no longer sign a will, trust, Power of Attorney. You NEED to do this to protect your future financial situation.
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Hello and welcome. This is a good place to learn and also to vent. We are all friends here.
Why are you moving to TN? Do you have family/a support system in place there? Support is very important. I hope all goes well with your move and that you are able to find good doctors to help you through this journey.
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Welcome! The advice about getting an elder law attorney is spot on. We set up trusts and POA a couple of years ago. It can be expensive but worth it.
I have similiar experiences with my DH constantly telling me he loves me, etc. I have gotten to the point of tuning it out. I think he does it because he is afraid I will leave him and this terrible disease. Of course that will never happen. I have more patience now than I did in the beginning. I have a better understanding of what he is experencing. To save my sanity, I have to remind myself this is completely out of his control and it could be me that has some horrible disease and need him to take care of me.
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Welcome,
I am new here also. DH 57 and just diagnosed ( although it’s been going on for quite some time). I can understand with the constant “I love you “ , I have that and “ did you know I have a hot wife” about 50 times a day. I’m not cold, it is sweet but not constantly saying it. I have to repeat myself all the time. I’ve tried to avoid ( although I slip) saying I just told you that. I work full time and have 2 boys in college. This is a devastating illness. DH has EOAD. I thought I was alone, but am finding out we are not. Make sure to try find time to take care of yourself
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welcome Dia. Love humor and sarcasm, it helps me get through the day. I need to laugh, even if it’s about myself. I chuckled when you said Road to Hell. Perfect description of our journey. My DH also does the I Love Yous, You’re beautiful and you poor thing (because I deal with him) multiple times a day. It does get exhausting, but would rather have that over anger.
The move. I really feel for you. I look around and I don’t think I could do it. I would be exactly where you are, basically doing everything alone, but also have a big obstacle in your way. Overwhelming I’m sure. I’m glad you found this space. Wonderful people here.
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Hello, and welcome. Feel free to vent here, because we do get it. Having moved (for the purpose of getting more family support) less than a year ago, I find myself now, with DH at MC cleaning out all the things he wouldn't let me get rid of. For example, we had a huge collection of DVDs which are now gone. We had a big entertainment center to keep them in, too. Remember that the time will come when your PWD doesn't remember or care about some of the belongings, so you will have a chance to get rid of them later. But I totally feel you because the major possessions add weight and make a cross country move even more expensive.
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Welcome swissmiss. I am a Tennessee native and still here. I don't envy you planning a move. I will have a big one in the future but it won't be until after my partner dies.
As much as you can, you may do better to pack up or get rid of things without your DH's participation or knowledge. I know that's very counterintuitive, especially if they are primarily "his" things, but frequently with dementia it's out of sight, out of mind. If there are family or friends who could take him out for lunch etc. on a day/days when you have packers come (and i would absolutely pay for as much help as you can afford), he won't interfere and probably won't even miss stuff. If he asks about the table saw or the six sets of drill bits, say it's already packed up. Or if there's an offsite location where you could consign stuff for sale, a similar strategy might work. Just throwing things out there. It may sound devious, but it's really not: a broken brain can't make reasonable decisions, and the less you ask him to participate the better off you'll be. My partner was a custom builder/contractor and i have two barns full of tools and lumber, so i can relate.
The tiresome comments are also pretty common. My partner still does this, even though she's been in memory care for two years. I think it's her only desperate way of trying to hold on to me as the one constant in her shrinking and unstable world. Fortunately with her it's not so much sexualized (which would be extremely irritating) as just a constant "i love you so much, i need you so much." It's sweet but pitiful, really, and a constant tug at my heartstrings.
Good luck and keep us posted. You've come to a good place.
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Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.
Your life seems really complicated right now, no wonder you feel as though you have the weight of the world on your shoulders. You do.
Is the move necessary? Will you be gaining family members who will support you in concrete ways? If someone is encouraging you to move for support, you want to make sure you're on the same page. Do they mean mowing your lawn or dropping off the odd bag of groceries or do they mean they'll care for DH on a regular basis to give you respite even when that might mean incontinence care.
If your DS on spectrum doesn't transition to an independent adulthood does TN meet or exceed what CA offers in terms of safety nets and services? I have a son on spectrum who is likewise high functioning— he's got 165 college credits and still isn't launched. Of my friends with similar sons, only one is working in his chosen field and not "at home" despite college degrees and high IQs.
If you don't have LTC insurance or infinite funds for care, is one state better than the other in terms of Medicaid should you need it? I specifically moved my parents out of FL under the recommendations of our CELA. My state is pretty good, but neighboring NJ might have been better.
As for the moving? That's hard. Moving is difficult for PWD (and autism). I was fortunate that dad was in a SNF for rehab and I was able to move he and mom without his input. Several months after I moved him into an apartment, I moved them into a house during which time I had them stay in a nice hotel for the weekend.
Dad had concerns about his stuff. I moved a lot of it into storage and was able to use that as the answer for all his questions about his things. I had pictures on my phone I could show him.
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HB makes a good point swissmiss, I must say it had crossed my mind too. Tennessee ranks very low in terms of state supported services, both for Medicaid and for education in general (I can say that, as I used to work indirectly for the state Medicaid program). Wish it were better, but i can't imagine it would outrank CA in any of those areas.
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Okay let me explain…I am moving to TN because I want to get out of CA even though I am a native. I am going to TN because he has a daughter there. Not that she would support me in any way, but if push came to shove, she would step in. I married my DH on a stupid whim 4 years ago before real symptoms showed up, He has asked me for 8 ys or so. I began realizing what a mistake it was for me to have to be responsible financially for him so I got a divorce. We still live together, and I was hoping to be his caregiver. I heard that I could be paid to care for someone.
When this began, I convinced my sister to move with us since everything she does is on the phone. This way, I won't be doing this alone. We were looking for houses to buy. We want something with a basement or like a mother-in-law suite. I found a school in Gallatin for my son. So I want to live near there, but I don't want to buy without knowing anything about the area. So we are going to rent. And NO, we don't have a place yet. Coming out there in June to look. We will stay in an air B&B for a while if we have to. I am planning on coming by the middle of July. I know I sound crazy. Anyway, my son is high functioning and lives at home, and wants to go into Ophthamolic technology. He has been a straight-A student throughout high school. He and my DH bump heads all the time which doesn't help.
Back to finances, my sister and I have Trust, so financially, along with any other jobs we are okay. Now, the Trust is secure, but I wanted to cover myself. He agreed, at the time anyway, that he didn't want me to be financially responsible for him and agreed to the divorce.
So, maybe that answered questions? Yes, I am the crazy lady from CA.
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to be his paid caregiver, you'll first have to get him qualified for the Tennessee Medicaid in-home care waiver program (called CHOICES). The pay isn't much, and they don't cover much: they'll do an assessment regarding what he needs in terms of help with activities of daily living such as bathing, dressing, grooming, toileting, ambulation, meal prep, laundry, shopping, escort. If you are doing shopping, cleaning, cooking, and laundry for yourself and your son as well as him you will not get paid for that. It maxes out at about 27 hours per week (maximum) and for most it's a lot less than that, particularly if there is family who is not working outside of the home. They do not pay for safety monitoring. You should definitely find a certified elder law attorney in Tennessee to help you negotiate the process.
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You really need to talk to a CELA lawyer in TN/ before you move. I’m not sure what the ramifications are for you financially/ legally if you two continue to live together even though divorced. You may find out you will be on the hook for more than you think. There’s also the fact that his next of kin is his daughter, not you.
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Familiarize yourself with anosognosia. He may be aware of having a bad memory, but he most likely is not aware of the depth of his deficits nor the terminal prognosis. If you are stressed by him repeating he loves you, more stress will be coming. On the other hand, if he has some awareness of the prognosis, there is something to be said for spending one's last days in the country. I would like that for myself.
Look for Abe's Garden, it is a renowned Memory Care Facility.
Iris
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Oh my gosh. I could have written that first paragraph almost word for word. Sometimes i feel smothered by all the words of praise, affection and gratitude. From everything that I have read, we need to store up these good memories to keep us going when things get worse.
My DH is supposedly in ES of ALZ, but has already had 2 bouts of peeing all over the floor. I struggle to remember that he has dementia when 90% of the time he "seems" so normal. But, then he will use a wrong word, or ask me the same thing over and over. Worse yet, if we are watching a movie or series with a complicated plot, I have to explain it to him. At times, it feels like I am living with someone with a low IQ, not a former memeber of Mensa.
We made a major move last year, before he was diagnosed. I'm not sure we would have moved had we known he had ALZ. At least, now I know why it was that I had to make all decisions before and after the move.
I think you had a question of how to deal with this, patiently. I know that there are a lot of non-believers out there, but to be perfectly honest, I don't think I could deal with this without my faith. I am by nature, an impatient person and, I am ashamed to say, an intelligence snob. Over the years, I have repeatedly asked to help me to overcome these flaws. In a not so funny way, it seems that now I must overcome them. In short, I start the day with taking time with God in prayer.
Thanks for sharing your story. While it made me feel less alone and less crazy, I'm sorry that you are having to go through all this.
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@Maru: I think, from what you describe, that your husband is not in the early stages. Perhaps he has a large cognitive reserve (Mensa member) that makes it seem like he is in an early stage. I would venture a guess that he is stage 5-6 out of 7.
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Actually, that is what I think, too. When he was tested in June, his excutive function was still in the normal range, but now, I have to explain to him the nuances of Downton Abby and Young Sheldon. When he called our g-grand children our nephews and nieces, he didn't even catch it when I corrected him. I've stopped correcting his verbal errors. There is no point, but I do ask what he thought I said, when a response is so out of left field that I'm flummoxed (sp). If is wasn't so sad, some of this would be funny.
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I hope that this is not a double reply; my laptop seems to have a mind of it's own. When DH was tested in early June, his executive function was still in the normal range. I'm pretty sure that it is shorting out now. i have to explain the plot of everything on TV to him, Young Sheldon to Downton Abby. When he called our g-grand children our g-grand nephews and nieces, he did't even blink when I gently corrected him. From some of his responses to me I think that he is not able to understand some of what is being said to him.
I do think that regardless of what stage the doctor puts him in, he is probably in a mid-range. Thank you for your verification.
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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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