First Post
This is my first post, although I have been reading conversations on this forum for months. You are all so knowledgeable and compassionate and I have gained more knowledge here than with all the doctors or well meaning friends and family combined.
Here's our story:
I've known my DH for 30 years. We have been incredible friends, and sometimes more for all of those years. The timing for us just never seemed right but always we were dear friends. In 2016 we reconnected. I had 11 year old twin boys at home and they'd had a very rocky situation at their father's house so I vowed to make no changes in their lives until they graduated high school. We finally married in April of 2022, two months before they graduated. In keeping with my vow, I remained at home with them until after graduation.
We had a blissful year, then in October 2023 he was diagnosed with MCI. In May of 2024 the diagnosis progressed to Alzheimer's. Almost immediately we began Leqembi infusions. We traveled 2 hours one way every two weeks for a year for the infusions, then in May of this year his neurologist decided that he had progressed to the point the Leqembi was no longer benefiting him. Last week he had a driving evaluation which he failed with flying colors so he is now for all intents and purposes, home bound.
I have to work as my twin boys still live in my house and attend a nearby college. I pay all the bills for them and have no choice but to continue to work full time. He was a successful insurance agent but now is retired and on social security.
DH's daughter helps a lot but she has a husband and two young children and also has MS. She has also taken over his business so there are times she is just unable to help. Immediately after his diagnosis his daughter contacted their attorney who is the best CELA in the area and got everything in order. Basically, for my part, in the event of his passing I am allowed to live in his house but also have to pay all the bills😟. Again… I have my own house that I pay for so I won't be able to afford to keep up two households. I failed to mention, my house is in the middle of my family's land so I would never just sell it to a stranger, I would have to move back.
Regrets… I have a few. I should have married him YEARS ago. He is truly the love of my life. He is still so very sweet, kind hearted and loving but I miss HIM so much. I suppose I saw the signs before we married but it seemed minor, unimportant. I feel like he has progressed very quickly. I have read "The 36 Hour Day". I have immersed myself in this forum and read many conversations. Using the DBAT he seems to be stage 5. I am devastated! I am devastated! I am devastated! We had such grand plans for our later years. Now they are gone and so is he.
Thanks for listening ❣️
Comments
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Welcome and so sorry you had to find “us”. Your future post raising kids has definitely been upended. Glad you were able to share your feelings here. None of this is fair and every journey is different . Keep reading here and sharing your feelings. Since your boys are still in the home, keep them aware of the disease progression. ((( HUGS)))
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welcome. I’m so sorry about your husband’s diagnosis. My heart breaks for both of you. This disease robs us of so much. Its good that his daughter can help some. Come here often for info and support. We understand what you’re going through. Hugs. 💜
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I agree with Victoria - enlist help from an elder care attorney. I am new to this but have learned in my short time here that YOU need to take care of yourself first so you can care for your loved ones.
Stick with us. We are on our own separate journeys, but are not alone. We have each other to lean on.
Take care.
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So, his daughter has taken care of HER best interests. Now you need to hire an attorney to look out for you.
Perhaps it's my PTSD talking, but the person you knew is quickly disappearing. Wouldn't your life be simpler if you left, divorced and moved back to your own home? None of this is benefiting you in any way, it's just presenting more stress and uncertainty.
I know, but you love him. And - you have 2 children that need your assistance, a home you should be living in, and don't need to use the income you make to augment the home you're currently in.
You can be upset that I'm saying this, but you have to be practical here - you don't have a time machine to go back and redo your life. This is the one you have, and you need to extricate yourself from this situation.
His daughter can worry about him and his care, since she seems to have covered her own bases.3 -
Thank you all for your kind words and concern. To answer your questions… my boys are definitely aware of his disease. They go to school full time and have both had part time jobs since high school. They are the best kids you could ever meet. They both have a full ride due to scholarships and grants. I am so proud of them I could burst. It is definitely cheaper for them to live in my house and besides, I wouldn't want to rent it to a stranger because it is in the middle of my family's land and I have several family members that live within a stones throw, yeah I know, it sounds kind of like a compound 😄.
DH has LTC insurance and we are looking into home healthcare, possibly a companion that could come two days a week. Not sure how he will react to that but perhaps they could take him for a drive or to the gym, just so he can get out of the house.
As for his business, his DD shares the profit with him. Proceeds are deposited into an account that they are both on however that is his money. I do not have access to it but it will be used for remodels to our house. The bathroom is completely unusable for someone who may become disabled or even if I have to help him in there as far as toileting or showering. It will also be used to cover what LTC insurance does not, although she has asked in the past if I could help with that by using his SS money. I don't think that will be possible.
I will not be contacting a CELA on my account. His DD and I have had somewhat of a bumpy road. She didn't trust me when we first married even though we had been the dearest of friends for 30 years! We have finally come to grips with each other. I know it has been difficult for her as she has always been deeply imbedded in his life in terms of health, finances, housing, diet, relationships, you name it. I try to put myself in her position, like if it was my mother marrying a man late in life. I think she is finally accepting the fact that I do love him with all of my heart and only want the best for him. We now text almost daily to keep up with his progression. I am absolutely not interest in any money he may have, though I would love to stay in the house that we made a home. The way I look at it, I would have been doing life alone and taking care of myself alone anyway had I not married him. It's not his job to "take care of me".
Sorry this is so lengthy. I just have so much on my heart right now. I sit here at my desk at work typing and crying. I KNOW that you ALL know exactly how I feel. It sure is good to get it out. There is no one else for me to "dump" this on. Thank you again for listening. I feel like I have some new friends 💕
~Heartbroken
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I cannot emphasize how important it is for you to see an attorney to look out for you. I don't care how much you love him - you say that the daughter didn't trust you at first. Well, she STILL doesn't trust you - that's why she locked everything up like the house you'll "be allowed to live in and pay all the bills" and the account where all his money goes that you have no access to.
Don't be the free caregiver here (which is what she is hoping), you do all the hard work and when you bail she'll invoke his LTC policy and reap those benefits. You said it's not HIS job to take care of you, but it's also not YOUR job to be his unpaid nurse/warden.
You have no idea how ugly and terrible this disease is unless you have cared for someone through to the bitter end. Look out for yourself. Nobody else will. As the kids say "you don't want this smoke"! You cannot see how bad this could turn out for you if you aren't told.
Don't let your pride or "love" get in the way of making wise decisions. Undo what has been done and you can continue being a friend without being the nurse.4 -
First of all, I'm not going to "bail". And yes it is out of love that I'm doing this, not pride. My mother cared for my father with cancer until he died. She did not get paid for doing that, nor would she have ever wanted to. She did it out of love and compassion for her life partner. It's not his job to take care of me FINANCIALLY. It is both of our jobs to take care of one another in hard times. I will love him, feed him, clothe him, bathe him, whatever I have to do. I will not like it but it's what you do when you are married to the love of your life. I'm not trying to be a martyr. I will not be doing this alone. As I said, he has LTC that will cover the biggest part of home care or AL or MC. When we get to the point of needing constant care, it will be there.
I will not prove that his DD was right in the beginning by trying to take something that isn't mine. He earned whatever money he has now before we were married. Just as I have worked hard all my life to have what's mine. I am not well off by anyone's definition but I am not penniless either.
Thank you so much for your concern. I know you only mean to give good advice. And that it is. It's just not what I want to do in my situation. Each of us will do this journey in our own way. Some have a financial need to enable them care for their LO and that's okay. I don't blame anyone for fulfilling that need.
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I can completely understand where you are emotionally and you being comfortable with your current arrangement. That’s what counts the most. The hardest part is loving a person that’s slowly disappearing before our eyes and we can’t stop it. I think you have an amazing love story and I’m sorry this disease reared its ugly head. You raised two amazing young men that appear to be additional emotional support. It’s also good you have established a relationship with his daughter. Continue to do what works best for you and take one day at a time. Treasure those moments of laughter and keep coming back.
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I reread your story. I am very concerned. You appear to have rose-colored glasses on regarding your love story with a man who by your own admission had signs of dementia before you married him that you dismissed as minor and unimportant. Caregiving for a LO with dementia is hard enough for an empty nest long married spouse. In your case you are still working full time, have twin young men living at home, have a family home elsewhere, are paying all the expenses of your current home and have no control over your husband's money or business.
It is admirable to want to care for him yourself, but you don't seem to be thinking in terms of the known difficulties that the members are warning you about, because we have read these step-family stories before. For example, you are planning to remodel the bathroom but you don't have access to the funds nor apparently the authority to make substantial changes in the home. Members are already complaining about dealing with incontinence in bathrooms that they can access and about loss of sleep limiting their ability to go to work the next day. You trust step-daughter to allow you to remain in the home and pay expenses. But if she needs reimbursement for caregiving expenses, it will be very tempting for her to sell the house. Do you have anything in writing?
What you would like to do could be doable, but only with careful planning after being AWARE of the known challenges and difficulties. Many spouses have to retire in order to provide sufficient caregiving. How would you access the LTC policy? My suggestion is to reread your responses, make a list to bring to an elder attorney and address each concern to your satisfaction. You don't have to make an enemy of stepdaughter but you do need to consider your own life and needs. This is my opinion after reading your stoy and many others like yours.
Iris
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I assure you that my rose colored glasses fell of and were obliterated by a bus in 1990. I am FULLY aware of what it takes to care for a dementia patient. My grandmother died of Alzheimer's a few years ago and I was a co-caregiver along with my mom. My mother kept her at home until death. That will not be the case with my DH. First we will have home health care. Then AL when needed, and MC and hospice in the end. It is taken care of. I will continue to work, for the income but also for my own sanity.
DH makes enough in SS for us to live comfortably. I am the co-owner of that account and it pays our household bills and also allows us to take a few nice vacations, until he can no longer trave, we're definitely not getting rich from it but it covers everything. That account is mine to use as I need. I have my own account that my paycheck goes into and that pays the bills for my home that my boys live in. All is cut and dried. The account that his business proceeds go into will pay for the remodel. This has been discussed with DD, in fact, she was the one who initially brought it up, though I had thought about it as well. The remodel is at MY discretion, and I will consult a contractor that has experience with wheelchair accessibility.
I know quite a bit about finances as I have been a VP of a large bank for years. I am not some silly girl that lives her life in a romance novel and expects love to conquer all, the Dolphins to win the super bowl and the democrats and republicans to all just get along. I know the reality of all of this. The LTC has been in place for years and is paid through his business account. It is all taken care of. I have reviewed it all including all documentation that the CELA prepared. I didn't include all of the details about the LTC, Family Trust, will, etc. because it is a non issue. Though I appreciate your concern I do not need advice about my finances. That was not the intention of my first post. I simply wanted to introduce myself and give you an idea about my story and my sweet DH. I do absolutely welcome advice regarding this disease, its progression, medications, tricks and techniques. And I look forward to sharing my experiences, of which I have already had many.
At this point DD and I need each other. We are on the same page regarding his care, the house, etc. She needs to know how he handles life when he is with me and I need to know the same when she is with him. If my boys decide to live in my house after graduation that will be great. They will get good jobs and pay the bills. At some point I may move back there and give up my life estate. As I said, much of my family is there including my mom who I will probably end up caring for in years to come, though she's in better health than me at this point! Again, thank you so much for your concern but I will not be destitute. Tired and heart broken and sick of the things I will have to deal with, but I will be okay. Please no more financial suggestions.
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Thank you for posting your story. I appreciate the opportunity to read about other people's journey. I think we all need to travel our own path on this journey, make our own decisions when faced with these difficult circumstances. Not all of us will make the same decisions in the same circumstances. The value I find in this group is that it helps me make informed decisions. It sounds like you have a pretty clear understanding of what you are in for and how you are determined to proceed. I wish you good fortune. Please keep us informed on how things are going.
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So sorry that you are having to walk this path with us but you are welcomed and this is a safe place to be open. Lots of advice offered and, while some may not fit your situation, having the input is always helpful. For me, the bottom line is that you have to do what is right for you in your heart and mind, no one else. You have to be able to live with yourself today, tomorrow and the rest of your life. Take the input, pick what you feel are the pieces to apply to your situation and move ahead. No one need defend themself here for their decisions. As so many have said over and over, the path we take is unique to each of us and our loved one. Everyone I have experienced on here wants the best for you and your loved one and we all will offer our two cents trying to be helpful. But, the final decision about how you go forward must be yours, and yours alone. There will be plenty of opportunities on this path as we look back to find regrets about what we did, how we behaved, what we should have done differently but at least those regrets are ours because we did the best we felt was right for our loved one.
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I am so sorry you are here with us. I have read your posts. A couple of thoughts: You need to consult an attorney immediately! Do you have Power of Attorney for your husband? Are medical directives in place? Your husband did not protect you. You are allowed to live in the house and pay the bills knowing you can’t afford to support two homes. If you stay in the home and pay the bills, what else are you responsible for? You don’t own the home. You are a lifetime tenant. Are they covering major home repairs? New roof, HVAC? If you do not have this agreement in writing for you to stay as a lifetime tenant, it is not legally binding. It is common for lifetime tenants to be responsible for the bills to run the home. It is also common for children to try and remove the spouse and sell the house. As far as I know, you can not divorce someone with diminished capacity or leave them. There could be serious legal ramifications doing this. Could you sell the house you are living in with your husband now and move both of you into your home? This would give you money for his care without liquidating your assets. How do they expect you to properly care for your husband without access to all accounts? You need access. If at some point you need to place him in a facility, the out of pocket cost could cost up to $10,000 a month. Long term care policies do not always cover the full cost or limit the time period of coverage. Have an attorney review the policy. Protect yourself. His children are not your friend. I would not trust them. They showed you who they are early on in your relationship with their father. This is who they are. Believe it!
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I am so sorry about your lost plans and regrets about the past. This disease generates so much mourning!
I agree with those who say that you will find your own path, and while comments here can help you learn more about possibilities, you know your own situation best.
Wishing you well. People here do understand your feelings of devastation.
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I don't think you fully read my posts. Understandable because they are lengthy. In a nut shell, I have all legal documents in place to my satisfaction. I did not give all of the details here because… why would I? I would NEVER divorce my husband! Especially in this state!!!! Why would you even say that???? I also specifically requested, No. More. Financial. Advice. I know you think you are helping but all of the things you mentioned are TAKEN CARE OF! I am and educated woman. I have dealt with wills and POAs and Family Trusts, and yes, even broken families, angry children, step children, and disappointed spouses in my job. I KNOW WHAT TO EXPECT. I'm good, thanks.
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Beautifully said.
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As far as alz. ,read the book 36 hour day. Watch as many videos by Tam Cummings as possible. Come to this site for questions on care or just to vent. There probably is not anything that someone on this site has not went through,from sundowning to trying to get them to take medication or eat.
There might be personality changes you don't understand or some action you don't understand. There's people here that can help you work through or explain to some degree why they are doing it. Make geriphy. Dr your best friend. Try to keep your self healthy and give yourself time away from the stress. Sounds like you have a great bunch of boys for support.
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3'sacharm,
Thank you for joining this group and sharing your story. I'm glad your husband is still able to participate in your and his plans for the future. You've also experienced Alz before in other family members which gives you an informed eye and an understanding of what is coming.
My husband of 50 years has now been in Memory Care for a bit over 3 months. The first weeks were dreadful with confusion and confabulations, then he adjusted and had a couple of months of stability and joining in activities and being the kind, charming man that he is. Now he has moved into another bit of instability…he's pushing furniture over, fighting with caregivers (completely unlike anything he has done before ever) so we've decided to change his medication and reduce outside stimulation because we had a week with out of town visits and new activities that may have destabilized his adjustment. He still is lovely to me and when I am there and although I can tell he's losing more of our history it still makes me feel good when he says "I like you" even though that may be an indication that he isn't sure who I am. I am still very lonely at home.
That was a bit about me to introduce myself and my journey so far, and welcome you to the group.
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3’sacharm, I’m so sorry you have to be here. You’ve come to a good place. I can always count on the fact that someone here has already gone through something I’m struggling with and can offer their insight on what got them through. You ended your post with, “I am devastated!” I totally get that, I’m still angry at what this disease has stolen from us. I love my DH and hate seeing him suffer daily with the losses in his life. That’s what this place has been good for, to lay it all down, spell it out, hear yourself say it and know people here get it. I don’t know what I’d do without this place, no one else in my life gets it like these folks do. I hope you find help for the journey. I know I have. Take care and thanks for sharing your story.
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Thank you to those of you who have kind words to say, and for giving me your stories. This disease is so devastating whether you've been married 3 years or 30. It is just heart wrenching. I have seen this disease first hand with my grandmother but it is so different when it's your husband. He was always so confident, take charge and smart, some of the things I always found so attractive about him. Now I have to lay out his clothes for him, including the Depends. He can't drive or cook or even choose something from a menu. I know this is just the beginning and I hate what our future looks like now.💔
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I am so sorry that you or anyone has to walk this path. It is one that is devastating for the loved one and the caregiver/spouse. Everyone in a family is affected by this disease but the spouse caregiver lives and breathes it every second of every hour of every day. It takes its' toll over time. Having lost my dear wife just two months ago I have a perspective now that I wish I had learned much sooner. My lesson is that all those moments when we are stressed, scared, angry, exhausted and feel as f we cannot continue become our regrets, disappointments in ourselves, memories, and nightmares when it is over. Today I long for another day of that stress, frustration, exhaustion because it would mean that she is still here. As bad as the worst day ever was, it would be way better than any day without her here. My lesson is that I should have looked at every precious moment with her as a gift, not a curse. I should have pulled myself up out of wallowing in my own self pity and recognized that her misery was not of her choice. If you are walking this path, know that every moment that passes is one you cannot reclaim and try to take it as a blessing not a curse. Relish each chance to help your loved one, regardless of how difficult it may be for. We have the ability and freedom to choose how we react, our loved one does not. Failing to do so may leave you with a remaining lifetime of regret and guilt as it has for me.
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Thank you for that reminder. I would be at a loss without my husband, even though it’s like having a child.
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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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