X2 now
On Monday, my mom was also diagnosed with Alzheimer’s. It completely threw me for a loop and I am completely devastated. I’m their only son (I am an only child) and feel completely alone and overwhelmed. They can live alone now together, but I know things will be changing.
I just want to see if there are others out there who are dealing with two parents with Alzheimer’s at the same time. I am 50 and they are both 76. Any advice would be greatly appreciated. Thank you.
Comments
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Welcome to the message board. I'm glad that you found us, but equally sad that you needed to find us. We are here to help you along this very bumpy journey. Ask questions, vent, rant whatever you need to do to help you help your parents.
I do think we've had others that both parents had this ugly disease. Hopefully they will show up. There are many of us 'only's' that have been on this journey. I will give you my two cent perspective. You get to make the decisions, you don't have to consult with siblings whom aren't talking, or whom don't agree just for the sake of not agreeing, or whom haven't seen their parents in x number of years but suddenly think they know exactly what's best for them. No, you don't have to mess with that. Instead you have the honor of taking care of both of your parents. Yes, its overwhelming at times, but we are here to help you. You know them best so its easy for you to make a decision, right?
For now the best and first thing to do is to get all of their financial information / paperwork in order and with your name on it. I'm meaning everything, bank accounts, investments, savings, etc. While doing that make certain your name is on their medical information so you can speak with their physicians.
That's enough information for now, I know your mind is going a mile a minute. Take a deep breath and do one thing at a time. Possibly get two notebooks - one for mom and one for dad. Keep notes of various things in them so you can keep them separate and help you keep things straight.
We are here to help you. I'm so sorry you have to be here.
eagle
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Hello 18Banners, I'm taking care of both parents with dementia. Dad has vascular dementia and Mom has Alzheimer's. My dad was just placed in assisted living due to multiple bone fractures on his right side. Mom made me POA, initially "springing" but just changed to immediate. I am 55 and dad is 89 and Mom is 83. The biggest worry of all is finances. Costs for dad's care is draining their bank accounts. Soon Mom needs to be placed too but how can she afford it? Planning for placement for my parents is what I wished I did before their diagnosis. I am learning so much from reading posts from this support group. Keep reading here. We are all dealing with someone with dementia. We are in it together. I wish you well.
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I would strongly recommend you see a lawyer and get all the legal matters under control. Don’t wait! The middle stage can be very tricky. You want to give them independence, but you want to keep them safe. Remember safety comes first (in my opinion). Too much independence and there is a car accident, financial scam, or someone falls down the steps. Anosognosia is common and is the inability of someone with dementia to recognize their symptoms. You can’t count on them to tell you they are not able to do things and need help. Stepping in and telling a parent they can’t do something or will need to do something they don’t want to is tough. They will not be able to stay safely alone in their home for too long. I recommend looking into what happens next. AL facilities can have a waiting list. This is a group for new caregivers on this site. There is a lot of great information. I would recommend the staging tool and understanding the dementia experience. I found them very helpful.
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Just chiming in to say that you're not alone. Mom, 81, with ALZ; Dad, 84, with mixed dementia, presumed ALZ+vascular. I tried to get them both to move at the same time into MC, but their denial was strong and I couldn't pull it off. While I was working on getting guardianship to force the issue for their own safety, Dad fell and broke his hip. Now Mom is in MC near me, while Dad is in a rehab back in their hometown, 700 miles away. Now they're separated and I don't know if they will ever see each other again.
I wish the overworked neurologist who diagnosed the first of them 2 years ago had had a social worker in the practice who would have INSISTED on getting a care plan in place long ago. Strength to you!
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This site and the r/dementia subreddit have been very helpful to me. I have just started a substack, Dementia Times Two, if you want to take a look:
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Also a X2 now (to the day just like you) and joined this forum for support and resources. Thinking about how to get a treatment option plan (given there are now 2 approved treatments), inquiring on clinical trial availability, and practically, what will housing support look like for two people who may be on parallel but different journeys. Good luck to you. It's not easy.
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In the same boat. Mom 84 and Dad 86 and an only child. Both with different kinds of dementia and different stages, however my mom is catching up quickly. I never know what to expect when I turn that corner into their room. Its tough. Take one day at a time. This board is excellent for information… everyone is so helpful.
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Thank you so much for your response and feedback. I really appreciate it and need it right now!
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hey there, I too am an only child and I know how overwhelmed you must be feeling, as I feel at the end of my rope a lot too! my dad has passed but my mom is a real handful and is constantly directing her delusional abuse my way. its so hard when you dont have a sibling to help or talk to. be sure to take care of yourself …that is what I am trying to focus on best I can…
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I can see how it must be awful trying to cope with all of this alone. But! I have a sibling that is more difficult to deal with than my mom. Mom still blames me for everything, my sibling can do no wrong and throws me under the bus all the time. He wants mom to be told everything. She has high blood pressure and is a big worrier. He complains to her about working so much overtime, his high blood pressure, refrigerator quit working etc. She is always telling me how worried she is about my sibling. I have no control over what he dumps on her. He did nothing to help find an Al, has done next to nothing to clean out her house and expects me to find a way for the government to pay for everything. With out question I think this would be easier on my own. I guess the grass is always greener.
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wow, I cant imagine…its hard enough having no one, but having someone actively working against you would be really awful as well! My mom has rampant anxiety so that doesn't help with her delusions either…she is constantly stressed and blames me/accuses me of everything 'bad' in her life, but I've done nothing short of awesome for her, even though she wasn't a great parent to me at all growing up. It has been hard to weed through 'guilt' (because she is good at guilting me) when I limit my interactions, but am working towards doing what I can while keeping my own mental and physical health intact. I am guessing your sibling isnt going to change, so you'll have to do what you can, to do what you can, and just go from there- you are only one person. It must be so hurtful to have a sibling like that…at our core we all want to be loved by our family members and its especially hurtful when we don't receive that from them. I will say it does feel good to find some support and others here going through similar. take good care of yourself!!
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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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