new to this as me and my family found out my grandmother is recently been diagnosed
I'm new to this discussion board and just joined this as a way for support. My family just recently told me that my grandmother has been recently diagnosed with Early on set Alzheimers and this weekend me and my mom are going to tell her the news that its becoming a reality that she will be starting to live with us most of the time if not all the time. Not including the montly or so trip back to Dublin GA where my grandmother lives to visit and go to her doctor appts and see her friends etc. I dont personally dont know how to feel about this move and trying to process it all at once because I always thought there would be a solution i just never thought about this one and just kept holding out hope and kept thinking postively for a solution just not the one my mom had in mind. Now I'm feeling scared, anxious, overwhelmed about all of this because this is the time first time it has happened to any of my family members. i know it will defintely be hard on all of us, and right now its giving me so much anxiety, stress and I'm trying to cope with all of this so suddenly and its really hard, and mentally I'm emotionally scared, overwhelmed with all of it. Any prayers and support my family and I would appreciate if anyone would.
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Welcome. I’m so sorry your family has to go through this. Many with dementia have anosognosia. This is an inability to recognize their symptoms or limitations. With that in mind, don’t be surprised if she is not able to recognize the need for this move. Some can even be angry and argumentative. I hope this is not the case for you. Because of the anosognosia it’s possible she may put herself in a dangerous situation. Your mom is doing the right thing. I will attach a few resources that might be helpful. In my opinion educating yourself about common symptoms can take some of the shock away when you experience them with your loved one. I hope something here helps.
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I agree with H1235. Educate yourself. There are a lot of YouTube videos that will help, Tam cummings, tepa snow, and careblazers are helpful ones. That way you will not be totally caught off guard when behaviors start. You and your mother are doing the right thing.
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First of all there is no way that you are "supposed to feel" about this situation and how it will affect you, because it certainly will affect you. The good news here (if any) is that AlZ is usually a slow progression. Having said that, you have time to read up on how to respond to grandmother without demeaning her. If you continue to live with your mom, eventually everyone will be making sacrifices for grandmother. You asked for prayers, so I see that you have a faith. Honestly, I don't know how I could get through this (DH is in Stage 4 ALZ) without Someone to lean on. I have my favorite psalm earmarked for when I need that Rock to lean on. I try to remember what Christ said, "what you do for the least of these, you do for me." It makes sacrifice easier. I think of this trial as my proving ground.
On the practical side, make sure that you mother has taken care of the critical legal stuff…Power of Attorney and Medical Power of Attorney. These need to be done while your grandmother is still mentally competent so sign…wills and trusts, well.
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Have your parent's indicated that they expect you to be providing the caregiving oversight for your Grandmother while they go to work etc.? Are you working or in school? That's a pretty big burden to assign to someone else.
Change of locations isn't easy for a PWD , depending on her stage you may see an uptick of symptoms after each trip back and forth so your parents need to decide on a long range placement at some point.
Kids learn from repetition - don't touch the hot stove , knives are sharp- a PWD is losing that ability to learn and recall. Not coming back. Plus there can be visual distortions- distance between items, center focus blurry —it varies. So at some point you can't just turn on the TV and assume they are safe by themselves. Your parents need to plan for this . After you've read up on the disease process talking to your folks would be helpful- what are their plans, what do they expect from you, what is the cost to you ?
Also, the Alz Assoc has a no cost help line- you can talk to a social worker there about everything, facts, resources or get understanding and support. And keep reading and asking here.Get Help and Support, Day or Night 800.272.3900
The Alzheimer’s Association is here all day, every day for people facing Alzheimer’s and other dementia through our free 24/7 Helpline (800.272.3900). Talk to a dementia expert now and get confidential emotional support, local resources, crisis assistance and information in over 200 languages. It's ok if you don't know where to start. Just give us a call and we'll guide you from there.
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hey just wanted to thanks for all support and I really appreciate and I know my family will too. As far the legal things my mom has already and the POA since 2022 because my grandmother had her do the POA because in 2022 my grandmother needed emergency surgery and my mom handled the legal paperwork that came with it, and also taking care of her bills, etc while she was recovering in the hospital. My mom and me will help take care of her while my dad is working. As far as the long term placement for right now she will be living with us doing the in home care, right now apparently I guess the facility that is near my grandmother is more expensive that I thought of and slightly more expensive than what she's paying for in her single apartment townhouse. Maybe eventually my family will look up more facilities either here or in Dublin GA that has a better price range and can compare and make a decision if we have to do that, it’s just apparently the one that my grandmother talked about or my mom looked up for the price right now it is not an option. There wasn’t really an option at first I saw to put not the primary caregiver but just someone who will also be living with them along side my parents if that make sense.
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Thanks for all the support it just seemed to me when I first heard my mom told me that I didn’t really want to believe it at first and wanted so badly a different outcome for my grandmother. And at first I just felt so alone and scared and kept stressing myself about this, because didn’t have to courage to tell my mom about how I feel about this. Finding this support group makes me less alone, and it’s stressful and scary for me but I’m glad I can lean on everyone’s support because it makes me feel less alone in going through this for me personally. because it’s first time in our family this has happened to one of our family members.
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thanks for all helpful resources I will definitely check them all out. And apparently this may have been caused by the stress from in the 2022 where she was recovering in the Hospital after she had surgery my mom thinks. And thanks again for all the support and the help in trying to process this whole thing that is new to me and my family I know me and my family really appreciate it.
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Dementia care can be very expensive. Now that she has a diagnosis it might be worthwhile to revisit a lawyer to discuss finances. Things like- how long before she will qualify for Medicaid, what does Medicaid cover in your state, if Medicaid seems likely is there anything that might be done to protect her some of her assets (we did a prepaid funeral). Your mom might be able to charge her rent. I know it sounds crazy, but there is definitely a cost to having her live there and if the money has to be spent down anyway, it might be worth talking to a lawyer about. Your mom should also keep in mind that facilities can have a waiting list to get in. If you wait til things just can’t be managed from home any longer you might find there is a 6 months wait to get in. It would be good to tour a few places and get her on a list. While it would be nice to get her to choose an assisted living and be happy with it (she does have dementia), your mom really needs to make the choice. It should be in a convenient location for your mom!
https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/0 -
just want to say to everyone who has commented on this post sorry if I haven’t replied to all the people or already have, thank you for all the support I really appreciate it helps me realize that I’m not alone in me and my family dealing with this terrible disease. That this support page is here to help me and my family. And that Even though it’s still just so stressful, sad and and overwhelming in still trying to process this that I can go to this support page when I need it for help and support 💪🙏
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thanks for the suggestion yeah I’m not sure if my mom had looked into that one facility near where my grandmother lives as far having the support for Alzheimer’s and the facility there can take care of her in that way if that make sense. I’m sure if we need to go down that route later down the road, that my mom will do more research on that. its just for right now I’m assuming the facility my mom mentioned the price was higher than what my grandmother can pay for right now and that my mom has made the decision for now not to do the facility because of the financial situation with it being more than what my grandmother can pay for right now.
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I wanted to also say I’m sure my family will probably look in those facilities and go into more detail about it once we can figure out the rest after her getting moved and settled etc. And will go into more detail/ specifics about the facilities later down the road when we need to do that if necessary, but I’m sure at least maybe start to look into those facilities as a start.
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Hi @Arkhamknight , I just wanted to let you know you don't have to respond to each person that posts a response. You're welcome to do so, of course, but it's sometimes easier just to join in the discussion—read them all and then respond to common themes or ask additional questions that come to mind.
We're a supportive community here, and I'm happy you found us.
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Hi Arkhamknight,
Send your mom this way too if she needs some support!
One of the things about the disease is that older memories may still be intact, while newer ones disappear. Now may be a good time to sit with your grandmother and video her talking about family history and find out her own stories. Just be aware that sometimes stories might get jumbled together.
You will probably find that one of the more difficult things is that the person asks very repetitive things, because their brain can't retain a memory of what they were just doing or talking about. So they will have a few 'go-to' questions to start a conversation with you or make a comment about, over and over. It will definitely hone your patience—just be as sweet as you can, and walk away when you can't. You don't have to make her understand that she's struggling with a scary disease, because the disease won't let her hold on to any of that information now. Sometimes it's easier to just tell the person they've come for a visit. 🙂
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sorry my bad, I’m not sure if when I do reply if it’s tagging the person automatically instead of me mentioning the username, so I might have responded to the same person. @sandwichone123
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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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