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Introductions for New Members

AlzWife2023
AlzWife2023 Member Posts: 234
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Welcome to the group. I started it today.

As is often said on the forums: sorry for the reason you are here be but glad you found us.

I’m a 51 yo wife and caregiver of a man with Alzheimer’s. I’ve been caregiving full-time for him for almost two years and I no longer work outside the home. I will begin working virtually part-time in September.

Let’s all introduce ourselves here and anyone can start a new discussion thread to address any specific topic.

Comments

  • SueKat
    SueKat Member Posts: 1
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    Hello. I am new here. I'm 55 yo wife of DH diagnosed with vascular dementia. I am still able to leave him at home by himself at the moment. His long term memory is still good but short term is not. This is a new journey and I welcome and look forward to any stories from others on how they cope with issues arising from dementia, such as irritability, fixation, protecting them from doing things you know they can no longer do but feels they can, etc.
  • Sunshine-kes
    Sunshine-kes Member Posts: 2
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    Hello, I am new here too and your story is extremely similar.

    I am a 54 yo wife of DH with Alzheimer’s. He was diagnosed three years ago at the age of 64.

    I can still leave him at home but he does get confused and forgets where I am and where he is. He still drives although I am limiting that more and more. I work out of the home 2 days a week. Those days he calls me 25 times a day.

    He is irritable, paranoid, agitated, and gets fixated on things. He is peeling his thumb nails off. He also does not “know” or acknowledge that he has Alzheimer’s. Every 6 months when we go to Dr.’s it is like the first time he is being diagnosed. He does not recognize his inabilities, blame everyone or something (technology, construction, others) for any shortcomings.

    His long term memory is ok but short time is very bad. He did have a heart attack 20 years ago and I thought it could have been vascular dementia but drs say not. I believe it to be in the back of the brain as opposed to front as l and he is on medication to add low the progression.

    Looking forward to meeting people and learning and comforting each other we try our stories.

    Thank you for reaching/listening.
  • HollyBerry
    HollyBerry Member Posts: 173
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    Hi - I'm 58 - don't you dare tell me I'm not young enough for this group! 😀 My partner is 75 and we've been dealing with all this since 2016… thanks to FB memories, which reminds me regularly of some of the things that happened that year that made us wonder if something was going on. She was diagnosed in January of 2020, just as the pandemic started. I work full time, 2 days at home and 3 days in the office about 4 miles from home. My boss and coworkers are amazing and I think I'll be able to stick with this job and the hybrid work schedule long term… whatever that means. I've been told not to retire to take care of someone else and I agree with that 100%.

    At this point, she wants to stay home most of the time, and does nothing all day other than feeding the cats and dog too much and eating too many granola bars. She would fill the birdfeeders ten times a day but can't remember to clean the cat box. I can get her to visit her horse most days but she won't go with me to walk the dog. She can sort of use her cell phone to text me and her sister, but probably couldn't pull together all the parts of calling 911 in an emergency. I made 3 visits to memory care places last week. I don't think I could get her to go to a day program and she won't let anyone in the house.

    What's keeping me sane right now is short bursts of outdoor exercise. I can get out for a bike ride and be home in an hour. We live by a lake and I bought a kayak this summer, so I can get out for an hour or so and get some peace without having to get it on the car and drive someplace. Yoga with Adriene on YouTube saved me last winter when we didn't have much snow.

    SueKat, my mom had vascular dementia. I've learned a lot of things here that I wish I'd known at the time!

  • kscroce18
    kscroce18 Member Posts: 8
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    Hi, I'm 55 and my DW will turn 60 next month. She received a major concussion in 1/2020, right before covid. Slowly she was getting better, but some things were just off. This past fall she was diagnosed with EO. It has been very difficult. She was misdiagnosed with MS for 7 years, found out she didn't have it, and then this hit us. Like most, she has good days and bad days. One good note, her personality is finally back from the concussion; she jokes, laughs and smiles. She does not drive, as she struggles with her vision. I work out of the home but am fortunate to have split days off. So, she doesn't have too many days in a row alone. She is about to begin IV with Kinusla. I've been working to get the house safe… home generator, replace wood stove with pellet, cameras installed, etc….I worry when she can't be home alone, but yet I am not able to retire as of yet.

    Thank you for creating this group. It means a lot to know there are others out there in the same awful boat as me.

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    edited August 19

    Hi everyone!

    Glad to see the new members. I think being middle aged and going through this as a spouse is a special challenge, as many of us have careers and maybe kids to consider.

    Our kids are adults but the youngest was in college when we got the diagnosis (his dad’s behavior had been weird for a long time before that) anyway, he —the youngest took it really hard but he’s now more relaxed and accepting of the situation. He’s made huge strides. I’m really proud of him. He can help now & does (without getting upset).

    Regarding career, I put mine on hold and depleted all my savings over the last few years (since Covid when we moved and I left my high paying job to stay home with hubby). Almost everyone told me not to give up working for obvious reasons but I didn’t really have a choice. I get a lot of help from our children, financial and practical, and it’s become a team effort. I’m starting a p/t teaching job online next week. It’s exciting and a big step forward. It took a long time to get to a place of relative calm and order. I went through a lot of emotions and feelings of anger, resentment, and regret. It’s cyclical.

    DH has been on the rivagstimine patch for a few weeks. It seems to help with focus and basic communication. He needs help with showering, prompting to eat and brush teeth and wear clean clothes, and he usually needs to hold someone when walking outside (he’s wobbly). He hasn’t driven in 1-2 years and his short term memory is shot. He’s worse at night. He gets nasty when he’s tired. He’s generally happy though. He hasn’t handled any IADLs for 5+ years.

    I don’t know what the future holds for me or him. I guess he’s late stage 5 or early 6. I will have to start earning again soon if I’m not to become totally dependent on my kids for the rest of my life.

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    Hi @HollyBerry you’re the perfect age for this group! Eight years is a long time! I agree that giving up a career & income is crazy, but I did it. Can you get an aide for the time you’re at work? Are you worried about safety? I’d be terrified to leave my DH alone. He collapsed & fell unconscious in March mid day & I found him a few minutes after. I don’t know what would have happened if I’d been at work. Not trying to scare you. I might have continued working and left my DH home alone if my daughter had not insisted (after spending a few weeks with us) that he needed supervision. I was angry and in denial. We can’t afford memory care. Have you found one you like & can afford?

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    hi @kscroce18 I am also worried about the wood stove. I have not switched out to pellet but I should. I spent all last winter watching him while he fiddled with the fire and I tried to be up early before he woke up so he wouldn’t have a reason to go near it. Last year our wood got pretty damp so it was a nightmare. This year I hope & pray that he’ll be too “lazy” to bother with the stove. He gets distracted easily so if it’s taken care of he can be redirected. Time will tell.

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    @SueKat My advice is to cultivate patience and slow everything down. Lower your expectations and find distractions. Never contradict or argue. You’re reinventing yourself now as a caregiver. It’s a job that requires skill and grace. It’s a tough job, but somebody’s got to do it!

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    @Sunshine-kes My DH was just like yours: “irritable, paranoid, agitated, and fixated on things” and he picks at his skin tags and moles until they bleed, but I find he’s usually easy to distract if I am calm & clever. If I’m cranky, he gets cranky. It’s truly a round the clock job & I’ve stopped treating him like a partner because he’s not anymore, he’s a patient who requires my complete patience.

    Most people on the forums will say if he’s forgetting where you are when you’re at work he shouldn’t be driving. That’s the first thing the neurologist asked us about when my husband was finally evaluated and diagnosed two years ago & I had already taken over driving. He’ll say he’s fine, but there’s a lot of confusion and disorientation that we may not realize our loved ones are experiencing in the early & middle stages & they don’t recognize their own limitations. 

    My husband started pointing at things incessantly and turning his head to look at things while driving, and when he started to run red lights and not see things in the road, I quietly decided to take over the driving and never made an issue. Just said: Can I drive? I want to drive! I love driving! People with dementia have perceptual issues and timing & response issues. It’s not worth the risk to them and others to allow driving once serious cognitive decline is noticed.

  • kscroce18
    kscroce18 Member Posts: 8
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    I’d get the fire going before going to work and would worry all day. She gets distracted too and i would come home and find the door of the stove open. No more.

  • HollyBerry
    HollyBerry Member Posts: 173
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    Do I worry about her being home alone? Yes, and, sort of, but not really. I should worry, and I'm sticking my head in the sand right now. As I said to the person at the MC places I visited, we're one incident away from needing more help and maybe subconsciously I'm waiting for that incident to push things along. Having someone come in would probably create more stress than it would alleviate. I gave up on having the house cleaners every 2 weeks because I had to deal with her arguing and being a PITA for the entire time, which meant I got no work done for half the morning on my WFH day. Friends are two steps ahead of us with a parent, and after much searching found a person they thought would be a great fit, and after a month the person got a better job and left with no notice. I can't imagine having to manage all the "HR" stuff of finding and keeping someone and also the negativity around having them there at all.

    And, it must have been terrifying for you to have to find your husband unconscious. I've never had to deal with that degree of injury in any context.

    the MC search… In a perfect world I would go for the big campus where my mom lived in AL. Flowers, music, coffee shop, etc, great vibe for the families, run by a nonprofit, $$$. This week I heard from the ADRC person who gave me the link to the state inspection records. The flowers & music place is suffering from some management issues, apparently, and has had some surprising management-type problems in the past couple years. The smaller place that is a franchise had no violations or issues noted in the past 3 years. So I'm back at square 1 with no strong preference for either place but saved myself a ton of time and effort by crossing many others off my list once I looked up their state records. Now I need to complete the application, which is hard to do from work but harder to do from home when she comes into my office a hundred times a day to tell me about something cute the cat just did.

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    I’m dreading the winter because of this but it’s too late to do anything now…or is it?

  • kscroce18
    kscroce18 Member Posts: 8
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    i just ordered my pellet stove. It is never too late.

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    We’ve already gotten our (4 cords) wood delivery for the season so we’ll tough it out this winter and see how it goes!

  • klindholm25
    klindholm25 Member Posts: 3
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    I am new here. My husband was diagnosed with EO 4 years ago. I was his caregiver for the past couple years as well as working full time. I recently had to put him in a memory care facility because I couldnt do it myself anymore. I have been very strong through all of this but in the past month I am a complete mess. All I want to do is cry. We don't have any kids and I have one sister living in the area so I don't have a lot of support. I'm trying to find others like me and am seeking it out here. I need some direction as to if there are online discussion groups that might help me.

    Thanks

    Kris

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    Hi Kris,

    I’m sorry you’re feeling so sad and lonely. I can relate.

    This is the only place I’ve found online to talk to people who understand what I’m going through.

    I think putting your husband in memory care is a huge transition and loss even if it’s what’s best and should be a relief in some ways; he’s moved out of your home and life and that’s a tremendous and permanent change. Can you find a therapist who knows about Alzheimer’s to help you through this period?

    I’m so sorry. I dread the thought of it myself even though I am so exhausted mentally and emotionally and sometimes wish I could be free of the caregiver role.

  • fehk82
    fehk82 Member Posts: 2
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    Hi

    me: 57 YO. DH 69 YO


    My dh was diagnosed 1 year ago. I’ve been seeing issues for about 8 or 10 years. I had considered divorce at times during that time. He was cranky and convinced we couldn’t afford anything. Everyone, including me, thought he was just getting old and grumpy.

    Now we have an FTD with ALZ diagnosis. I’ll end up keeping him home because our assets are too high and quite possibly get zero help even at home. I am no longer a spouse. I am just a caregiver. I am the first to tell you, I am not caregiver material.

    I’m beyond frustrated. Thus far I can’t find an in person support group nearby. Dementia organizations seem more interested in raising money then actually helping. Seems I can join support virtual groups around the world. I want in person so I can get out for an hour. I almost didn’t sign up for this forum because I’m tried of virtual, boards, pages or forums. I need human contact.

  • AlzWife2023
    AlzWife2023 Member Posts: 234
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    @fehk82 How long have you been married? I felt the same way about my husband before his diagnosis. I was getting sooooo sick of him!

    I would also like to meet other spouses going through this. It’s rough to have a partner one day and the next day realize you don’t.

    Can you still relate to your husband on some levels and continue in friendship and love?

  • redbullpucky
    redbullpucky Member Posts: 1
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    edited October 15

    Hi, I am a 55 yr old caring for my 56 yr old (EO) husband. He was diagnosed 4 yrs ago during the pandemic. It has progressed quickly. I had to quit my preschool teaching job to care for him full time. I am lucky enough to have my 24 yr old son home with us (sort of lucky, he quit school to come help, so there's a whole different anxiety), but he really is just for emergencies and company. Neither of them are comfortable enough to have my son assist with personal care. My husband was always horribly self-conscious to begin with. Anyway, he needs a lot of care now, and I am winging it. I help him bathe, dress, brush his teeth. But it's so strange, and I have no training in adult care. The bathroom issues are the
    hardest. He wears Depends, but still tries to use the toilet regularly and winds up just going everywhere daily. He doesn't understand many verbal cues when he is flustered. And he is always flustered with daily care. I do not know how people do this. I am constantly following him around cleaning up, changing clothes, etc. The doctors are not helpful. They told me right away that he would need care. They did not tell me how I could pay for it. His disability is our only income. It's high enough not to give us support, but if we put him in a facility, we would not be able to afford our home. My 30 years of preschool teaching experience nets me a whopping $10,000 a year. Plus, he really is still very aware, and I don't think he would be able to handle it...and we are honestly not ready to let him go. So I NEED to learn how to be his caregiver and do this progression at home. I just stink at it. Kids are so much easier. They are cute, and don't have 30 yrs of marriage grievances lying right under the surface. That's just the bitterness talking. I love him, and am in for the duration. I am just not good at it. I yelled today. I know it's not his fault, but it was the second mop up, clothes change with little sleep...and I suck. He cried. It's going to get harder and I am already losing it.
    End of rant. Here is my question for this particular hurdle: anyone have advice for bathrooming? I have installed a handrail. He will not go when asked, he gets confused at the question. He is ninja silent, so he gets past me all the time. Maybe a handheld urinal? Any advice would be so appreciated. (Also, if this is the wrong place for these questions, please let me know and sorry in advance)

    Thanks for letting me vent.

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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