Introductions for New Members

AlzWife2023

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.

SueKat

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

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

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

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

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

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

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

@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

@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

https://alzconnected.org/discussion/comment/219784#Comment_219784

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

https://alzconnected.org/discussion/comment/219781#Comment_219781

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

https://alzconnected.org/discussion/comment/219837#Comment_219837

I’m dreading the winter because of this but it’s too late to do anything now…or is it?

kscroce18

https://alzconnected.org/discussion/comment/219884#Comment_219884

i just ordered my pellet stove. It is never too late.

AlzWife2023

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

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

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

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

@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

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.

AlzWife2023

Hi @redbullpucky i can’t answer the toileting question because we’re not there yet but almost everything else about your post I could have written. I’m 52, my DH is 81, & our 32 year old son moved in with us almost two years ago. He’s here for emergency & company, like yours. He doesn’t do caregiving but he helps with heavy stuff around the house.

It’s hard to take a half day for myself sometimes & I hate to saddle my kids who work all week, etc., but I know I have to take regular breaks or else I’ll lose it. I haven’t quite mastered scheduling these breaks, but I’m working in it.

I have grown and changed so much during this process. I try to look at the bright side. I am expanding as a person and receiving grace every day (so are we all as a family) and we’re giving DH the best possible care (I think).

I couldn’t afford care and even though he gets Medicaid, I don’t see ever placing him because it’s just not what we want to do, and certainly not now, b/c, like your DH, he’s aware.

My DH is old, not early onset like yours, so timing is different, I think. I think his journey might be very long whereas it sounds like your DH (& early onset in general) progresses faster (not sure if this is correct). I can see my partner hanging on for a very long time, but some days recently I ask myself if we are getting closer to the finish line. Will it be 3 years, 4 years, or 10+? I am young so I wanted to connect with people my age here.

I’ve seen problems since he had a minor stroke in January 2016. So we’re about to hit 8 years of a downhill pattern. I also was really sick of him and his attitudes before I realized it wasn't just him getting old but a real brain disease. I agree that 30 years of marriage issues and resentments had been boiling up & it was painful, but with time and intention you can move past these; you’ll have to feel them first but don’t them them take center stage. I let go of financial worrying by finding and accepting all the help I could & accepting that this is my job now. It has taken two years to sort things out.

I had to stop working in October 2022….so two full years now of no primary income for me, just some part time teaching that I had to quit b/c it’s just too hard to leave the house. Since August, I’ve been teaching two courses online and that’s been a Godsend for the extra money and connection. I don’t feel like my life has completely stopped anymore, but I do feel very sad and imprisoned regularly. I’ve had to work through a lot, try a lot of things, learn to ask for help, & learn how to accept it.

When I get out for a few hours or visit with a neighbor, I can reset. I have become much more faithful over the last two years whereas I was pretty much an atheist before. It helps to ask for help and receive it, to know you are doing good, to know that life always involves sacrifice, and to be at peace with your responsibilities, knowing you come to your caregiving from a place of ultimate love.

It sounds like you’re doing a great job. Good luck with your journey!

redbullpucky

Wow, I really appreciate this response. I love that you talk about your faith, too. It's the only thing that has gotten me this far. Though I will admit to sending some swear words upwords as well.

I saw in this site that there was a program that gives caregivers some practical suggestions. I am waiting for a call back. Hopefully they will have some insights, and maybe some ideas about what is coming next.

I don't really have help financially, but we have been given what we need each step of the way. It feels horribly mercenary to worry about how we make ends meet when he is gone. I am 12 years away from being able to retire, which makes me feel too young. But I am old and exhausted enough from all this to freak out about trying to start a career at this point in life that makes enough money to get us through (definitely not preschool). It wakes me up at night. Though it really shouldn't. Like I said, God has provided everything. We have had all our needs met even after having to go on disability, medical bills, house issues, everything. I have just always had 10 yr plans. I think I am being taught to let that go...I am just stubborn and would like to take the fail and move on to something else :)

I don't get out very much at all, though when I do, even just to drive to the store, I agree with you. It's recharging. I am tied here due to the bathroom issues though.

Have you had any issues with friends and even family just ghosting you? This was a huge surprise to me. My husband's own brother couldn't handle even seeing him...even in the early days. I lie to my DH and make excuses for everyone because he doesn't need to know. But it was just so shocking. On good days, I realize that some people cannot deal with the sadness. But it has caused me to reevaluate even my foundations. Not always in a bad way. I think I am different, too. I have to put on a sympathetic mask when I hear about other people's problems...problems that would have upset me before this too...but they seem simple and silly now. It has all left me more isolated than I have ever been in my life.

This is getting long and rambly. I do want to say thanks again, so much, for writing back.

AlzWife2023

@redbullpucky Hi—I am sorry I was not able to respond right away. It has been a very busy few days. I am so glad that my reply was helpful. I have often felt much better after reading someone's reply. This forum is very positive, in general, and hearing form people who know what you're going through is comforting.

Regarding "friends and even family just ghosting you"—We don't have any family or close friends that we rely on as a couple and and my few friends have all been kind. They do not live nearby so I have chatted with them and vented when I needed to—one has Parkinson's herself and it's hard to talk to her about this, one took care of he mother with dementia and is a nurse so she's super sympathetic (but she doesn't dwell—just stresses the need to take time for myself. The other friend is taking care of her 90 year old mother and she sympathizes too—so I am pretty lucky in that way. It's not the same as caring for a spouse, but it's helpful.

It's probably scarier and more confusing for people to understand early onset dementia. People assume old people will get funny and need care, but it's ,but it's much more of a shock and a challenge for them to sympathize with middle aged people through this. Can you find a group for EO spouses?

I've been able to make new friends in my community (moved to a rural location from NYC during the pandemic) and I have connected with the Council on Aging in my town and other community resources which have all been very supportive. Have you connected with EO groups? There's a charity called Lorenzo's House for families with a loved one suffering from EO that might be helpful.

https://lorenzoshouse.org/

We are lucky/blessed that our bills are paid and that we can put food on the table while doing this work of caregiving. It took me a while to separate from an egocentric way of seeing my life when I realized what was really going on with my husband, but I don't feel burdened any more. I am grateful that I can do this.

PS I think my oldest son who lives with us is ready to have his own place again and move on with his life (he's lived with us for almost two years now) and the idea of living with my DH alone is no longer terrifying for me. I feel like I can handle what's happening now and that I can handle whatever comes our way in the future. I needed our son's support and presence until now to get this strong, but I am so much calmer and stronger than I have ever been. I've taken care of most medical, insurance and financial issues, started building my new little life, connected with community, etc. and learned how to respect and provide for my DH's personhood, needs, and dignity while also maintaining space for myself. Love is glorofying and strengthening!

redbullpucky

Thanks again (please don't feel pressured to reply instantly, I appreciate you reaching out any time). I have contacted the Lorenzo's House. That was super sweet of you to send the link. I just need practical advice on how to do this.

I think my son is ready to head back out into the world, too. But he is still anxious about us, and even his own future. It was a crazy disruption for him with the illness and the pandemic hitting right when he was trying to navigate college. He had a year left in a BioChem BS degree. But it all became too much, and he came home. He has anxiety and depression and is stuck. He has been an amazing blessing, but I do worry about him get back out into something more normal for his age. He works part-time at the mall now, and is just stuck. I think I can handle him focusing more on his own goals now,too. But he doesn't feel ready yet. It's really nice to hear that you have such a supportive and stable situation now. That it is possible. Thanks again.

Another day...

I don't find time to get on this site much except late hours. I started noticing changes after my second child was born in 2009. My DH experienced behavior changes and it has been horrible. Beginning of pandemic, everything changed. He was finally diagnosed with FTD. I have raised three children on my own with this disease. I work part time, care for him and my mother who also has dementia and three teens. It is very scary and lonely. My husband's family never call to check on us.

AlzWife2023

thinking of you all

I’m running errand no time for a real post

Just sending hugs

Do something just for yourself today

A cup of tea or a fun tv show

I’ve been loving oldies like murder she wrote & Colombo

Maybe Rhoda?