Hello
Just signed up today. My DH has ALZ, FTD and VD. I’m too overwhelmed to talk about it, but just wanted to say hello and thanks for being here. I’ll be lurking and absorbing your advice until I’m ready to talk. 😆
God bless you all.
Comments
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Welcome to the place no one wants to be at, but are sure glad it exists.
The start of the journey is daunting and scary, but know that here folks will step up to help you...all you have to do is talk and ask questions. It is also a good place to "vent" as only those who have been there can understand and sympathize.
Wishing you and your DH easiest days possible.
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Hang in there and as time goes by there will be days you don't think you will make it but you will.
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I can imagine it’s simply overwhelming to hear those diagnoses. You will get through this. Wishing you understanding and peace
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It sounds as if the diagnosis is fairly new. Is that right? When you feel ready to be more active, just start a new discussion with any concerns you might have. There is always somebody here who has been in the shoes you are wearing at any given time, and they can help. In the meantime, if you read a lot of the posts, you will quickly understand that this is a good forum. Welcome aboard, although I wish you didn't need it.
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Dear Lola V,
I am so sorry. Sending you hugs for peace and comfort.
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Thanks so much, everyone. He was diagnosed a year ago and it has taken me this long to realize I need as much support as he does. Again, I’m glad you’re here! 💜
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Let us know when you're ready to talk. There is much wisdom here, you are right that you can learn a lot just by reading. It will make you think of things you hadn't thought of before, and helps to be prepared emotionally and practically.
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I’m new too and reading the tender responses from folks. I’m just starting to want to share3
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I’m sorry you’re going through this, but know that we’re in it together. 💕
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Just wanted to say that this online support group has been a tremendous resource for me. I don't post very often, but I read the posts every day. There are some very experienced and knowledgeable people here, who are generous with their wisdom. I have learned so much from the other members on how to handle issues and solve problems. It has also given me a sense of perspective. It has shown me that I am not alone, that all of us as caregivers have challenges to face. When I read about other caregivers' patience, devotion, humor, creativity and courage in their journeys, it gives me a boost to keep on keeping on.
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Kibbee - I am also new to this platform. My DH has mild cognitive impairment. I am here with you. Learning and absorbing the wisdom and support of others.
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It’s nice to know that I’m not alone in this, since my DH’s entire family is 5 hours away. I don’t think they really believe he has dementia, because they rarely talk to him. 😔
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if it helps: my partner's family (two sisters) were also completely dismissive when i told them--now nine years ago--that their dearest older sister was developing dementia. It took them a long, long time to be able to admit that i was right. Neither one lived close enough to be of any practical assistance, so it was kind of a moot point, but....it adds to the isolation.
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It definitely adds to it!
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Welcome, Lola. None of chose to be here, but when we found this forum we found experience, strength and hope, and even humor to help us on this journey.
Love, Elaine
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Thank you. I’ve only been on here for four days and already feel comfortable enough to start talking about things. 💜
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Lola V: welcome to the place for support and answers. My DH was diagnosed with possible VD 2 years ago. He can't have an MRI so they're not sure. He has declined more rapidly the last 6 months. While you are waiting to post, make sure you have a DPOA if you don't already and read the book "The 36 Hour Day" -- those 2 suggestions helped me the most. At first I didn't even know what to ask or where to go for help. Now I come here to vent, get help & support. Nobody understands unless they have been through it. It's terrifying and heartbreaking.
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I'm new, too and about 9 months out from my DH diagnosis. He is happily unaware of his diagnosis, thanks to Anosognosia, but I'm very aware! Still wrapping my brain around becoming a caregiver, and the creeping realization that it's all - everything! - on me now, and I have no idea what to expect. I haven't posted yet, but read everything here - so helpful! I will post soon as I try to figure out so many things - Can he stay home alone while I go to a doctor's appointment? How do I continue to be a gramma and a caregiver? - and continue to be puzzled by how little help/support I've received from our doctors! You, as a caregiver, really are on your own!
Blessings to all of you here - so glad we have each other who understand!
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Thank you. It took 9 months to get DH’s mri, due to the process they go through when a pacemaker is involved. I got the POA and will taken care of with an attorney last month. Funny, I just ordered that book yesterday. 💜
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Mine was aware, until last week when he told me to cancel his doctor appointments because he doesn’t have anything wrong. I learned about anosognosia by reading this forum and immediately felt less alone.
I thought it was ok to leave him by himself, until I came home one day and the smell of propane about knocked me down. DH had turned the knob on the stove, but it didn’t ignite…was just pumping gas into the house! He was on the couch and didn’t even smell it! I wonder if dementia affects their ability to smell?
DH still cuts hair a couple of days a week and his work neighbors keep an eye on him. I’ve also got a few of his customers keeping me updated. Recent reports suggest that I’ll be closing the barber shop soon. It’s progressing so quickly that I feel like I need to buckle my seatbelt and pray!
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I am also new here. My DH of 38 years was diagnosed in Dec 2022 with moderate to severe early onset AZ. It took us 18 months to get a diagnosis. He had to retire earlier in the year as he could no longer work as an attorney. The decline in the 12 months up to diagnosis was pretty steep. In January I left my beloved job of teaching precious three year olds as DH can not be home alone safely. I do have a Stephen Minister from church that comes weekly and our children are helpful but it is still a lot and I am finding it feels very isolating as I have had to step away from activities or convert to zoom in order to participate. We still go to church on Sundays and he ushers when they need him. (He can usher in his sleep due to muscle memory as he has been an usher since he was in high school🙂). We walk our dogs, go to doctors appointments and out to dinner with friends occasionally. I try to interest him in other outside activities but he just says “You go” which I obviously can not do without him. He does not understand that I can not leave him home alone. Thankfully he did not fight it when he was told he could not drive anymore! He is a rule follower and when I said his insurance was no longer valid due to the AZ he stopped arguing with me about it. He watches TV most of the day. He was a workaholic and did not have any hobbies and now he can’t follow directions to learn a possible hobby. This is not what I thought retirement would be. It stinks.
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Welcome, new members!
Regarding having no hobbies: there are lists of activities for PWDs. Search for failure-free activities. For example, folding socks, sorting coins, raking leaves.
Regarding propane in the house: yes, two things. Dementia does reduce the senses, so the sense of smell diminishes or may vanish totally. The other thing is, PWDs lose the capability of knowing if, then. If there is the smell of gas, then what do I do? They may not recognize the gas smell, and may not have any idea what to do even if they do recognize the smell. They may not even recognize that this is a danger! This is true for all situations, they have no idea how to react. For this reason, at a certain point, PWDs are not safe alone.
Also, remove cleaning chemicals and the like. PWDs may think that the drain cleaner is a beverage.
Iris
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I hope you realize how blessed you are to have a rule follower. DH is the complete opposite of that and always has been. 🤣
Muscle memory is why he’s still barbering a couple of days a week. He literally cuts hair in his sleep. It’s so bad that I had to move to another room. His customers have reported personality changes, but still love his haircuts. I know it’s going to be devastating, to DH and the community, when I have to close the shop.
I’m so sorry you’re going through this. We’re watching someone that we love die each day and the feelings of hopelessness and despair are so heavy. I’m asking God to help me understand where DH is at, mentally, so I can get a grip on my anger. He has dreams about me being unfaithful and wakes up believing it really happened. It’s just so hard. I’m glad I found this forum. Hugs 🤗
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I just want to welcome to all the new folks as others have, I want to say this is the place to find help with anything. Someone is almost always on here and we all get it.
Stewart
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Thank you so much 😊
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We're here.
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I appreciate knowing there are others with the same challenges or to know others have a DH that was challenging before his MCI diagnosis. It's because of this previous behavior that I don't feel I can share with family.
I have already helpful perspectives and advice. The results is I'm more relaxed which in turn has DH more relaxed.
At this time, DH is safe to leave alone, able to drive and working on house projects.
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I believe, in looking back at the extremely difficult times that almost destroyed our marriage, that DH had EOAD at least 10 years before diagnosis. VD added to the mix is what made it evident to take him to the Geri Psych. Family relationships were broken back then and I don’t believe they will ever be repaired. I’m mostly alone in this.
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I have started to get back out doing this I was once doing (i.e. attending church, monthly 5k walk event, etc.). I have joined a support group for caregivers of someone with memory loss. Primarily, these activities get me away from the house and on my own. Fortunately, I am able to leave DH alone. I don't anyone I would identify as a close friend. I have people who care, but I don't want to over burden them.
Remember closeness & support doesn't have to come from blood relation. There has been different times in my life where I felt closer to my church family than my family. Reach out any time.
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It is amazing how much this site helps me. I seldom engage in interesting daily conversations with others, and it has been very isolating to me. Even when I do, I feel like I live in an entirely different world then them.
The people on this forum have become my friends. I so appreciate knowing I am not alone in my struggles.
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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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