Looking to connect first time . New
Hi names Tom , caregiver for wife , she has Alzheimer little over 3 years , middle stage and struggling . We both are . Finally reaching out . I am turning 80 in May , this is the hardest thing I have ever done in my life . And saddest . Married 63 years , who would have guessed . Don't know what else say right now , but have any of you found that people we have known , life friends , church friends , even some family . Have pulled away ?? Thanks ,Tom
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Hi Tom and welcome, you have come to a good place for advice and support.
Yes, it is a very lonely road, and many of us have had that experience of people pulling away, including family members. I think people are frightened of dementia and unsure how to behave. I do hope you have a support system though-the ones who don't pull away can make all the difference in the world. This forum has helped me tremendously though-especially during the pandemic-and i hope you'll find it helpful too.
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Hello and welcome. Yes, we have had some people fade away and others who think “ he seems fine to me”. Keep reading the posts here and know that all are here to help and support. This is a hard , expensive and exhausting disease.
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Tom,
In our case (DW with AD since 2019, married 48 years), I feel like I have sort of cultivated those friends and family who have loved her, and they are my support system, or part of it. I have been open about her disease, asked for help, and tried to help them understand and engage however they feel able to. I don’t resent the distancing; and I buy care part-time to help me cope.
Still, it is way hard, and I admire you for taking it on. It’s an act of heroism, at our age.
Tyrone
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So true. I think either people afraid to be with them or just don’t want to deal with it.
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Hi and welcome. I am sorry for your reason to be here but happy you found this place.
Alas, what you are describing is a nearly universal experience.
HB
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Thank you
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My therapist says a lot of people just scatter. I try not to judge. The ones who stick around are wonderful.
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Welcome to the place no one wants to be. This is a blessing, even if you only read posts, they help you not feel alone.
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This forum is a respite for me, I feel heard and accepted. My DH is still in denial and I don't know if or when we can openly discuss what is happening. Thankfully within the last couple of weeks we've updated and completed financial issues to prepare for the future. This step is monumental that involved many conversations, all while skirting the obvious. It has been emotionally exhausting but I persevered due to the info I've received here, family and even my own Dr. ( who disclosed her own family loved one with the disease). Thanks for listening and for being here. I hope this will help others facing similar challenges.
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@brs your DH has anosognosia as do many (most?) PWDs including my husband. It is not denial. They genuinely have no insight that they are impaired. It is a brain condition that they cannot help or even be aware of. Thus we have to learn workarounds.
Good for you, for getting durable POAs and advance directives in place. That is huge as financial mismanagement skills loss and often distrust or paranoia can cause terrible consequences even in the earlier stages. I speak from experience.
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Tom, I am so sorry you have to be here but welcome. You really are among friends here and they will not scatter. I have learned that people (myself included) often fail to grasp the depth of people's struggles and pain still they have experienced it. People are not comfortable with the disease; they don't know how to act or what to say. I remember being like that when an acquaintance's husband developed Alzheimer's. I just had no grasp of the difficulty, pain and hardship. Try not to be angry because it will only tear you up inside. It is so hard watching others live their normal lives and our loved ones and ourselves are just struggling to get through every day. If I hadn't found this forum, I would be lost. These are your people now and you will find the best of the best here. Stay strong and keep us informed.
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Thank you
Thank you, I think this is were i am suppose to be . Just reading the post has helped . It is a lonely job . only people that have been there understand I guess .
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Hi Tom,
You will receive a lot of good advice and support here. Have you connected with Elder Services?
Do you get Meals On Wheels? I found this to be a God send, and its also great to have someone checking in every day to say hello and check on things. Your local Council On Aging has a lot of resources that you might be able to tap into. Please reach out to them. I was able to get a lot of things for free, as my local senior center stockpiles incontinence supplies, walkers, etc. We also have a day program here for people with dementia. They provide transportation to and from if you don't drive.
If you can afford to hire someone even for a few hours a week to sit with your wife, I recommend that you
do that. Even if you just take a nap or go for a walk, you need some respite time , and help with some personal care for her to give you a break.
This is hard, lonely, and exhausting. Please stay on the forum we are here for you.
Maureen
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Thank you
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Nothing but respect!
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Hi Tom. Welcome. I'm sure by now you realize this is the place to be. I hope you've already seen a CELA to make sure everything that is needed is already in place, like POAs and protecting a lot of your assets. If not, don't waste any time. You'll feel better after you do that, and it needs to be done without putting it on the back burner.
63 years of marriage is a long time. We almost made it to 65, but my wife passed 6 months before we made it. Yes, I'm sure this is the hardest job you've had. I'm sorry.
Stick around and you won't be sorry. People here are your friends, and they'll help in any way they can.
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Tom,
We experienced the disappearing act from some very close friends and family and, at first, I was saddened and deeply disappointed. In time, I came to accept that for many people this is too hard a journey, and to focus on those friends and family members who could tough it out with us. Dealing with my DW’s AD was the hardest thing I’ve ever done. Saddest and loneliest too. This wonderful generous caring community makes it less so. I’m glad you found it.
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> @Tlf44 said:
> Hi names Tom , caregiver for wife , she has Alzheimer little over 3 years , middle stage and struggling . We both are . Finally reaching out . I am turning 80 in May , this is the hardest thing I have ever done in my life . And saddest . Married 63 years , who would have guessed . Don't know what else say right now , but have any of you found that people we have known , life friends , church friends , even some family . Have pulled away ?? Thanks ,Tom
Hey Tom ! Im caring for my wife also . Indeed this is the hardest thing ever. Watching my wife struggle with Alz. Married for 49 years she still remembers me but mentally she can be all over the place . Shes 69 and her family has a long history of Alz , Grandmother , Mother , Uncles , Aunts so many loved ones. Caring for her with the help of a close friend but it is a lonely journey .2 -
Thank you for reply . Pat family has long history of Alz too . we always knew but hope it would skip us . She remembers me but some times mistakes me for her gpa or one of our boys . We have 4 childern they help on weekend live hour away . But its fulltime job with lot planing . Can't leave her alone. Very hard . Best to you .
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Thank you have heard from very nice people already . What is CELA ?
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Thank you Maureen , I think thats what i am realizing now , reaching out . Trying to see what help is out there . Been doing everything myself and learning I can't .
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Thank you I am finding that out
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Here is the national website to search for a CELA - certified elder law attorney, per Ed.
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Thank you Ed
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HI, Tom. You came to the right place. And you're right, there is such a stigma to this disease. We had dinner with our daughter and son-in-law last night and our daughter is still in denial that her father is getting worse.
It is the hardest thing I've ever done and we're just in stage 4. The good news is that the progression is typically very slow, the bad news is that the progression is typically very slow.
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Thank you , yes we have 4 children 2 girls are very aware , 2 boys in denial . She in middle stage now 3 1/2 years . can't do much for herself without help . But what is the # mean 4, 5 ,6 , ?
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I used the Tam Cummings staging - the link is:
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Thank you that was very helpful site .
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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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