First Post- Introducing Myself
Hi Everyone- I'm posting for the first time. Thanks all for being here! My wife has had a long and slow onset of AD symptoms over the past 8 to 10 years or so. It's hard to know if some of the odd behaviours 10 years ago were due to the AD, but I sort of think so. Over these years I've discussed my concern over her memory loss with her and she has, each time, become enraged. I never discussed any of my fears with anyone but my sister and my doctor, so I've felt quite alone! But last year I had a life threatening car accident when someone slid across three wet lanes on the freeway and plowed into me sending my car spinning and flipping over. My two dogs survived miraculously, but I broke several vertebrae in my neck and mid back. Through all of this it became apparent to our friends, who had increased interaction with my wife, that "something" was going on with her. So for the first time I was finally able to say out loud what had otherwise been a haunting, heavy, angsty dread about what was happening. So I'm very fortunate now to have great support from my friends. But I notice they can not provide the same comfort I find from reading some of the posts here, talking about experiences you are actually living with! As her condition has progressed she has gotten slightly less aggressive at the suggestion of "something going on" with her memory, and she was finally willing to go get tested. We went to a memory specialty practice and the neurologists conclusion was AD somewhere along the lines of late early to early mid stage. When the doctor left the room we both cried together briefly but she is not one for many tears. But in that brief moment it was though it had sunk in. But quickly, in her mind, this had all turned into BS and the doctors were all the enemy, etc. At least we have a diagnosis, which makes her relatives happy - but for now, the diagnosis has not really changed our lives- other than I have begun to have access to more support and confirmation that what I'm seeing is very real and I'm not crazy. I have struggles and questions about things I'm sure you all could help me with, but for now I just wanted to introduce myself and say hello to the group and thank you for being here. A special thank you to CindyBum for encouraging me to make my first post. I wish you all a good day!!! Thanks, Karen
Comments
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Welcome to the forum Karen. How sobering and scary to have that accident. Unfortunately a huge percentage of caregivers predecease their afftected loved one. I hope you have made contingency plans for her care. Many of us here (including me) have experience with life-threatening illness impairing our own ability to remain a caregiver.
Not only should you hold power of attorney for her for healthcare and finances, but backups need to be in place, and there should be clear criteria for what would happen if you can no longer take care of her. I am the sole support for my partner (in memory care now), but i am in regular touch with her backup medical POA (a doctor friend) and financial POA (our long time accountant) so that they both are fully apprised of what's going on with her.
GGlad you posted, you will find lots of support here. If you read a lot of threads you will learn a lot about what to anticipate also.
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There is really no reason for you to mention the diagnosis or any of the trigger words to her again ( dementia, early, mid, stages, what the future holds, etc). As you’ve discovered, she can’t remember it and she will get upset every time it’s mentioned. We normally use the words ‘ memory issues, that a lot of people have as they get older’.
Do get the documents that M1 suggested. Do start planning for the next time you have health issues and can’t take care of her. Start researching memory care facilities.
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What an accident! So sorry you went through that on top of everything else you are dealing with. My DW was very similar and she never accepted what was happening. She's in memory care now, can't walk or stand on her own and she can't feed herself any longer but will be infuriated with me if I mention any health or memory concerns. That's pretty much par for the course with this disease.
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Many people with dementia have Anosognosia. This is not denial, but is due to the diseased brain's inability to recognize it's own limitations. As others above said, it is best not to mention any of her trigger words. As time goes on, you will need to do more and more of the thinking and planning without involving her in the decision-making process.
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Thanks for your responses.I’m familiar with anosognosia and of course compassion is called for in terms of what we talk with our LOs about. I had not brought it with her for years, until this past year when her family began putting pressure on me to try to get her tested. Also our pcp recommended trying to test her in case there was some other issue going on that could be treated. I was hesitant to pursue this and tormented knowing that asking her to get tested would cause her emotional pain- but I also hoped of course that it might reveal that something could be done. As caring partners I know we find ourselves standing, at times, between the ideas of compassion and medical responsibility; or caring for a loved one versus self care, it is not always crystal clear and I think we all make the best decisions we can.
All our financials are in order, updated DPOA, plans in place if I die before her, etc. I have been through this before, as I was my father’s “person” and accompanied him through his journey with AD until he died in 2015.
My challenge now is to figure out how I might get my wife to accept having some help to come to the house without getting upset about it.
Thanks All
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As far as getting help, tell DW the person is there to help YOU or that they are having ‘rough times’ + you are helping them out by employing them so you can help them financially. The person can gently insinuate themselves into your household + if you are lucky, DW will look forward to their visits
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Karen, welcome to the forum. I'm sorry you need to be here but glad you found us. What a horrible car accident! You are dealing with a lot right now and, like you said, things aren't always crystal clear. I'm glad you have your financial affairs in order. That is so important. As to having someone come in to help, terei was right, tell her it is you who needs the help. Sending a virtual hug.
Brenda
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I sympathize with you about your vertrabrae injuries. I had a compressed vertebrae fracture (T1) in Dec 2021 due to a car accident and then another (L3) in late Feb 2022 due to a fall. I’m now on generic Boniva. It was a good thing my parents were already in assisted living as I was out of commission in terms of helping my parents for about 3-4 months. And took a while to recover after that. That’s when I told my mom she had to use her Rollator walker to go anywhere with me - as I couldn’t help her walk with a cane any more
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welcome. So sorry about your wife’s diagnosis and your accident. I was caring for my husband at home until 6 months ago I was diagnosed with cancer and had to place him in memory care. I never talked about dementia, I just said the medication was for his brain. When I had respite caregiver come 4 hours per week, I told him it was for me so I could go to the doctor. After the 2nd visit, he looked forward to “my lady” coming. Read the book “The 36 Hour Day” it really helped me. Recommended by a nurse. Have other family and friends read it too. I gave a copy to the caregiver from the agency for her to read it. You will find much info and support here.
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I’m so moved by all of your comments, advice, and personal stories regarding the “even bigger picture” of your lives! You have all truly made me feel welcome. So much energy is expended moment to moment tending to our LOs needs, but there is this other side- the “what about me” side we fight to honor and tend to as well. I’m still working my way through 36 Hours- lots of good information there but I admit it’s hard to read about this sometimes when I feel like I’m living it day in day out. Good idea to share with friends.
xox Karen1 -
Welcome, I'm glad to read that you're well along in your recovery from your car accident. That brought back memories, and thoughts of what could have been. About 5 years ago I was traveling on the freeway, in the rain, with my MIL as passenger. It was one of those things where I saw in my peripherial vision a car in the right outside lane kick up a bunch of water. I had the thought that these are hydroplaning conditions and dropped my speed from about 60 to 40. Within a few seconds this white brand new BMW went speeding by a couple of lanes over to the left of me…and then it happened…he started spinning and before I knew it he was coming head on towards me. I could have been you. But I believe that change in speed made just enough difference that he struck the front right hand corner of the car and not a direct hit. The passenger and I were not injured, but the car was totaled. I'm glad you're on the mend and you're around to provide the care your wife needs.
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Glad you survived your horrific accident! I am new to this game as well and am learning so much from this site. DH was diagnosed with AZ about 6 months ago by a neuropsych. He is on donepezil 5mg, but can't really tell if it is helping. I am in the process of trying to figure out what to do financially…no children or close family…basically no backup at all. I don't want to lose all of my assets, but it seems so complicated that I'm close to just giving up and just taking what comes. He is at the angry, nasty stage and has anosognosia. Trying to make a plan B for the event that I should become incapacitated or die…never imagined that life would end up this way. You seem to be handling it much better than I am!
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Phew, quite a story. So glad you escaped it. Thank you!!
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Thanks Bailey’s Mom- We have friends my wife doesn’t embrace as her friends anymore which is sad. So they can only help so much. The anosognosia is like the devil causing a daunting feeling of aloneness. I have nearby friends who support me, and a therapist. Also a PCP who I can really talk to. I hope you can reach out to a local chapter of the AD org in your area for connection to people in your area who can give you practical support to sort through this. I never discussed this with anyone but my sister and doc until my accident. Though my accident was life threatening, it actually turned out to be lifesaving because it was the beginning of my sharing this unbearable heartbreak with others, lots of OTHERS! We all need help, please dont try to figure this out by yourself. Among those who’ve helped me: therapist, doctor, friends, distant family, Alz org, local caregiver resources, trust attorney. And now this group! Make a call to Alzheimer’s Assoc tomorrow to start connecting! Stay with this group- lots of great people here to listen and support!
Xo Karen
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Thank you, Karen. So far I've only told one of my sister's & 2 of my closest friends. DH has not told anyone because he doesn't believe that he has a problem. He wants to move near Jacksonville, FL to be near his brother…the only family member he has a relationship with. He hasn't told him about the ALZ, and, I guess just assumes that he will be of support. It's not the place that I want to spend my final years (I'm 75) and I would have to leave the few friends and one family member that I have behind. I would do it if I thought it would remotely bring him any happiness and that he wouldn't change his mind in a few months. Not to mention that he is a hoarder and moving is almost impossible…I would have to do it all since he falls apart under any stress and won't allow hiring any help. I don't think that there are many resources available in my area but am going to take your suggestion and see what I can find. Every day is a new crisis…as all of you know! I really am not cut out for this…but, who is?
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I’ve realized there’s definitely a learning curve to this, and also that “this” is an ever changing dynamic situation. I just went through considering a move to a senior living community that has just opened up an hour and a half from where we are now. It has continuum of care and is a very nice place with lots of activities that I think we both would enjoy. I thought it help me have more freedom as my DW would not be dependent on me for connection with other people. But, there is no guarantee she would want to use those opportunities (she has little initiative to reach out to others, new for her due to AD), and it is far away from my best friends who give me support. Also, I really like where we are now! I support you in making the decision based on what’s best for you- that gives your DH a chance for best care from you, and gives you a chance to survive this! On a different note- I go on walks or drives alone in order to make phone calls to connect with support people (via phone or zoom). Maybe this could be a way for you to find support. Also, I relate that you don’t feel cut out for this. I often feel I “can’t do this”, even whisper it to myself when things are difficult. That’s what makes the support so critical!
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Hi Karen welcome. My husband was diagnosed with vascular dementia. Two years ago and I would say he is approaching middle stage of the disease. He can do his daily living things. But he sleeps more and is searching for words. I agree with the other comments if there are trigger words that bother her. I tell my husband that he is just getting older. That forgetting happens. It will make things easier for you.
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Thanks Mimi!
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Thank you all for your welcome and welcome advice. I really appreciate it and am glad you are all here!
Karen
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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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