New member(4)

daisyflops22

Hi, I'm new here. My emotions are all over the map. But the feelings of being very overwhelmed, alone and angry are a constant. The love of my life was diagnosed with Alzheimer’s last month. He's 63 and we've only been together for 14 years. There were little signs here & there that something wasn't right; things you'd normally just shrug off. Those little signs became bigger problems. I have a hard time talking about it with family and friends because they just don't get it, and there's an assumption or jump to 'does he know who you are?'  Really? Is that the only thing you could think of to say? I probably shouldn’t be so critical. They don’t see the new habits and nuances that I do.

Like many of you, I'm now having to manage household things that he would typically take care of, plus a number of other matters, along with finding ways to keep him engaged and involved day to day. And don’t even get me started about the insurance crap… And yea, I work full time thankfully from home. Sometimes I feel guilty for feeling selfish, like who's going to take care of me later on?

It's all just so much. It’s devastating, heartbreaking, and I’m scared for both of us. Anyway, thank you for listening.

Joe C.

Daisyflops, Welcome but sorry you needed to seek out our community. There are great people here with lots of experience to share.

If you have not done so already it is often suggested that you find a Certified Elder Law Attorney (CELA) and start getting your legal & financial house in order. It may seam like it is something you can get to later but waiting to long can have disastrous effects down the road. I also suggest seeking out a local caregiver support group, they can be a great resource for what services might be available in you area.

You can post anything here; questions, rants, scream or cries, we have all been there. 

riverboy

Hi and I am a new member as well. My husband was diagnosed in November of 2021. I could no longer care for him at home so we sold our home and moved closer to family. We put him in a memory care home where he did well for several months. The last couple of months , he started acting out with aggression and sexually inappropriate behaviors. The facility kicked him out and said he could not come back. They sent him to the emergency room who then moved him to a behavioral modification center where he is now. He won’t be able to stay here long but just long enough for them to try and stabilize his behavior with meds. I have gotten very depressed talking to him as he just wants to walk home and get our. My prayer is that another facility that has trained caregivers will take him. Any advise is welcomed.

Ed1937

Daisy, welcome. I'm sorry you need to be here, but rest assured that you've found a great group. You will get understanding here, suggestions on handling things, and there are plenty of resources for learning, which is something that should be near the top of your list. Here is a link with a lot of good information for you. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

Take Joe's suggestion about seeing a CELA as a necessary priority. Get it done sooner, rather than later. If you wait too long, you will surely be sorry. Many CELAs will give you the initial meeting free of charge, and they will usually last roughly 1 hour. Call for an appointment, then verify if the first meeting is free of charge. After the first meeting, you will have a good idea what they can do for you, and what the cost will be. If the cost seems outrageous, come back here for pointers.

Read everything you can so you will not be blindsided by whatever symptoms might come up. You will learn a lot just by reading as many posts as you can. But be aware that whatever you read about here might never be a problem for you. People are different, and symptoms are different, so don't let what you see scare you to death. Deal with whatever you have today. Best of luck to you.

riverboy

Hi Daisy. I can certainly relate to your feeling of being overwhelmed and misunderstood. My husband of 47 years was diagnosed in 2021 and was simply too much for me to handle at home. I certainly tried but finally became so overwhelmed with no family close and found myself at the end of my rope. We moved closer to family and put him in memory care. They weren’t trained specifically in Alzheimer’s and had many turnovers of CNAs. He was fine for a few months but then his behavior turned for the worst and was sent to a behavioral center. He will have to go somewhere else soon. This is a nightmare for me as I just can’t fix it and it really is not his fault. It is a very helpless feeling, as I really know he is a good soul at heart . I hope and pray we can learn to cope and not let our situation overwhelm us. It is good to know that we are not alone in our journeys! I will keep you in my prayers!!

Gig Harbor

Hi Daisyflops, 

Welcome to the forum. We know what you are going through and eventually your family will too. Two weeks ago my husband’s oldest friends were over. I have been telling them how bad he is getting but he covers well in front of people. Well he was in a complete delusional episode and didn’t even recognize them. They stayed only a short time but the next day they came by and he was better. The husband apologized to me and said he had no idea what I had been going thru. He said he found it so scary. Welcome to my world. He is patient with him but our times of socializing with them will come to an end because my husband is starting to babble on and not make sense. I don’t blame them and once he is placed I will resume my dinners etc with them. I read a post written by a man with Alzheimer’s. He is so articulate but has trouble functioning in his life. He said not to feel bad about placing a spouse and that no one ever got into trouble for placing too early but waiting too long can cause problems. Placing too early can be a problem due to cost so there is that.

Crushed

Folks please please please please

Fill in your profile with ages dependents and what STATE you live in  
 
 Almost all practical help we can give you depends on those facts

Don't put it in a post put it in your Profile   

Mint

River boy welcome to the forum.  Your post is sort of lost in Daisy’s.  Up near top of screen you will see a green rectangle that says add post.  Hit that and create your own post and get better answers for yourself.  You have found a place many find helpful.

KathyF1

Hi Daisy, I’m in a very similar situation. I’ve been married 11 years and my DJ is 68; he has shown symptoms for several years and now is mid stage Alzheimer’s. Yes I wonder too- who will take care of me? I try though to just focus on his needs and the reality that if I were not here he would be in a mess. His kids are heartless and I hate to think where he’d be if we had not met. In some ways it feels like I truly have a purpose in life - he really needs me. I guess if I had any advice I’d say remember how valuable you are to your husband!

Joydean

Daisy and Riverboy, welcome!

Marie58

daisyflops22 wrote:

 I have a hard time talking about it with family and friends because they just don't get it, and there's an assumption or jump to 'does he know who you are?'  Really? Is that the only thing you could think of to say? 

I think this is what most of our society hears about dementia-that someone forgetting who you are is the worse thing that happens. True, it happens, but in our case, so much more happened that was truly devastating before we got to this point. I admit, I knew next to nothing about dementia before DH was diagnosed. The learning curve was huge and it can be scary and overwhelming.

Daisy and Riverboy, welcome to the forum. You will learn a lot here from people who know and care. Ask anything and read a lot. But don't think everything you read will pertain to you and your LO. Each situation is different but it's good to be prepared. Blessings to you both and your LOs.

toolbeltexpert

Welcome daisy and riverboy.

David J

Daisy, I don’t know what makes me sadder:  dealing with the dementia of a life long partner, or dealing with the dementia of a spouse after only a few years together. We have both on this forum. I treasure the decades I had with my wife, and advise anyone to do the same, no matter how many years of happiness they had. 

Welcome to the forum; I hope it helps you. 

aod326

Hi Daisy. Joining this forum may give some relief from the overwhelm and loneliness - it certainly can feel as if one is managing this all alone. People who haven't experienced the awfulness of this disease first hand seem to think that forgetting you would be the very worst thing to happen. So many people asked me that question over and over. For me, DH forgetting who I am was one of the least of my concerns.

But I expect I might have said the same, before I was in this boat.

My DH was 60 when he died from EOAD, last year, and as this was a second marriage for us both, we were only together 19 years. I feel envious when I see people who've been together 40, 50 or more years, and sometimes I wonder if people think it wasn't as bad for us, because we weren't lucky enough to have as much time together. We were extremely happy for the time we were together, and the first 16 years, before illness set in, were really great.

Keep coming to the forum - there's an amazing amount of knowledge, tips & tricks, and moral support.