Feeling lonely and loosing hope.

kenL1966 · December 11

This is my first post here, as I just joined today.

My dear wife (DW) was diagnosed with early-onset Alzheimer’s back in February of 2022. I have been doing the best I can since the beginning, but I now realize I need some outside help. I’ve always been the type of person who thinks they can handle a lot and get things done by myself.

Early on, we did a clinical study at the Mayo Clinic, which seemed to help slow down the symptoms. I have always tried watching her diet, and we get a lot of exercise with walking when it’s not too cold.

However, I’ve noticed a big decline over the past six months or so. I’ve always stayed hopeful that we could get a hold of this disease and slow it down somehow, but now I’m starting to lose hope.

We’ve seen a neurologist a few times, but lately, they say she is too far along to receive any new treatments. Their message was basically to just keep doing what we’re doing and wait until the end.

I guess I’m looking to see if anyone knows of treatments available for early on patients who are moderate to severe.

Also need to look into getting some information on PCA for when I’m at work.

Thanks for reading and any feedback is welcomed

trottingalong · December 11

https://alzconnected.org/discussion/74809/feeling-lonely-and-loosing-hope

I am truly sorry for what you are going through. I think I can confidently say that the majority of us have been in your place where we remained hopeful the disease would not progress, and then it does. I personally don’t know of any treatments available but maybe some others have ideas.

Biggles · December 11

I am so sorry you are having to face this awful disease with your DW. It’s Christmas and like many on this forum I am feeling very flat and lost. I am lonely because I don’t have my DH anymore to share things with he is sadly lost in his own space in time. We have been to two special Christmas parties full of caring understanding people and I have a beautiful daughter and her family to spend Christmas with but I am so dreadfully sad. Usually I can jolt myself out of this dark space but at the moment I am having trouble.
To my knowledge Ken there is nothing much the medical field can do for our LO’s. Maybe in the future but too late for us. Apparently here in Australia they have developed a nasal spray that they are rigorously testing to fight dementia and alzheimers. Who knows.

Take care of yourself and your DW she has no one else who will care for her as much as you do.

JulietteBee · December 12

Sadly, treatment options are utilized with new-onset dementia. Once our LOs reach the moderate to severe stages, it becomes a countdown of the clock.

I am so sorry you are losing hope, but glad you found the group. We are all each other's lifeline.🫂

SDianeL · December 12

I’m so sorry about your wife. Sadly I’m not aware of any treatments to slow progression after someone with EO has reached the moderate stage. If there were treatments, the Mayo Clinic & the Neurologist should know about them. The current treatments for EO only seem to delay progression for a few months at best. Search online for agencies that provide home care for dementia for a PCA. Be specific what your needs are. PCAs are not able to dispense meds. If you need them to do that be sure to ask. Ask for a caregiver with dementia experience. To find agencies you could call the Alzheimer’s toll free number for resources in your area. 800-272-3900. Also check with your Agency on Aging and your county for senior day care. We understand what you are going through. Come here often for support. 💜

Metta · December 12

One of the most difficult moments of caring for my DH was the neurologist’s pathetic “I’m so sorry.” As he patted my arm. I know he meant well, but it made me angry. It was just a dismissal with no offer to help in any way. Not only were no treatments offered but no advice or guidance. As this disease progresses, caregivers need help, and the medical profession fails us. Welcome to this community. I wish you didn’t have to be here, but you will find a place for advice and support.

Timmyd · December 13

https://alzconnected.org/discussion/74809/feeling-lonely-and-loosing-hope

If your finances allow, I would begin to look into paid companion care now. Depending upon where you live there may be an overwhelming amount of options of very few options. In either case, it is best to not wait until you are desperate to begin the search process. My DW was diagnosed in Feb 2022 with EO. I made it all the way to April 2025 before I broke down and got some help with companion care. I waited too long. It pains me to tell you this, but if it has not happened yet, is only a matter of time where you will not be able to leave her alone.

In the first couple of years following diagnosis, it brought us closer together and we were traveling the path together. In the last couple of years it has been clear we are on separate paths.

SvetlanaConstant · December 13

https://alzconnected.org/discussion/74809/feeling-lonely-and-loosing-hope

my husband is 66. We noticed that he became very forgetful and was diagnosed with Dementia. I am at loss on how to reorient him to reality. Any suggestions?

SDianeL · December 13

https://alzconnected.org/discussion/comment/260599#Comment_260599

welcome. Sorry about your husband’s diagnosis. You are replying to a post. You will get more replies if you create a new post. Click on the plus sign at the bottom of the page to create a new discussion. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Search online for dementia caregiving videos by Tam Cummings or Teepa Snow. Learn all you can to help your husband. Search online for a chart that shows the 7 Stages of Dementia with behaviors listed in each stage. It will give you a general idea of where he is now and what to expect next. Unfortunately you can’t reorient him to reality. He has a new reality. Things I learned here: 1) Never argue with someone with dementia and 2) You can’t reason with someone whose reasoner is broken. Get into his reality. Fib if you must. Dementia is so much more than memory loss. You are at the right place for info and support. Come here often. 💜

Michele P · December 13

I am sorry you are here. Look into Dr. Dean Ornish’s Lifestyle Program. He started with clinical trials that reversed heart disease and applied those successful results to start clinical trials with early stage Alzheimer’s patients. In the trials, he slowed the progression and in some cases saw restored cognitive function. The program for heart patients is approved by Medicare and other insurance companies with qualifying heart disease. The program is not yet approved for Alzheimer’s. You can get an idea of the components of the program on his website.

Maru · December 13

https://alzconnected.org/discussion/74809/feeling-lonely-and-loosing-hope

Treatments for middle to late stages of ALZ are non-existent…so far. There is always hope that there will be in the future. As for me, I have turned from hope to acceptance. Everyone is different. It is just easier to accept and deal with reality than to pin my hopes on something that may not happen in time. I have grieved for the slow loss of my husband of 66 years. I grieve for him as he is still aware of what he has lost and is losing and I know how sad that that makes him. Sorry that you are going through this.

tboard · December 13

https://alzconnected.org/discussion/74809/feeling-lonely-and-loosing-hope

One of the hardest things we all have to deal with is the fact that there is no cure and the people we are caring for are terminally ill. For spouses this is a super long goodbye. I am sorry that you have to go through this.

tonyac2 · December 13

https://alzconnected.org/discussion/comment/260599#Comment_260599

As SDanieL suggested, start a new discussion with your question. My experience with my DH has taught me I will never be able to reorient him to reality. I must join him in his as that’s the only reality he can embrace. Less anxiety and frustration for him that way.

terei · December 13

I’m sorry, but if you hold onto the idea that there is a way to ‘reorient him to reality’ that you can learn, you are in for a world of frustration. In early stages, before there is much brain damage, he may still have some periods off and on mental clearness, but it will have little to do with what you say or do.

You can, however, learn to manage your reactions and responses to him and learn what approach(s) help to keep him calm and less anxious. He will be enmeshed in his own reality that will not be swayed by ‘facts’ or rational thinking. Read the 36 Hour Day and start reading the posts here so educate yourself about what to expect and how to manage his behaviors.

sandwichone123 · 1:17AM

Years ago, when my grandmother had dementia, we were told we had to orient our loved ones to reality all the time. Unfortunately, that did not help them understand the world better; it just made them feel like their caregivers were telling them they were wrong all the time. This damaged the relationship with the caregiver and increased everyone's stress, but it did not help the person with dementia understand reality better, and it did not help their brain regain function.

The current thinking is that it works better to find workarounds when our loved one does not understand reality. That helps both them and the caregiver remain calmer, and preserves the trust that makes caregiving easier. So if the person with dementia (pwd) wants to go "home" even though they're home, we don't tell them they're already home because they won't believe that. We ask them about their home, or try to get them talking about other memories that may distract them. Or we tell them we'll take them home "tomorrow," or that their home flooded so we're here "for now." These excuses allow them to be where they are without telling the pwd that they're wrong, and allow everyone to remain much calmer.

Feeling lonely and loosing hope.

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