I need your empathy and suggestions.

gary105 · May 29

New to this. DW has cognitive issues and is being diagnosed over next 2 months. Most times I am able to deal with this and we still have many good times together. But there are many times when this is so frustrating for both of us and very depressing for me. Walking outside or into another room sometimes relieves the frustration but not the depression. Your suggestions and empathy are greatly appreciated.

blacksparky · May 29

I remember so well the position you are in. Here’s what I did after we got the devastating diagnoses. First thing was to contact our trust lawyer and made sure that I became the person on her DPOA for medical and financial decisions. I also changed from her being the person to make decisions if I were to become incapacitated. I also assigned me as the trustee of our trust only if she were to die first. We did all this while my DW could still sign herself. Once that was all complete, we put together our bucket list of things we wanted to do like travel and we completed most of it before she couldn’t do it or remember. I am so glad we did this. All I can say is to enjoy each day with your LO and don’t look any further than the day you’re in. So sorry that you had to join this club!!

Silas31485 · May 29

I feel your pain. It’s so hard and so sad! I am new to this site and I was hoping someone has suggestions for companies to use for in home care. My husband wandered yesterday and I got a call from the police. It was horrific, thankfully he took it better than me.
I had gone to the store and I had NO idea he was at the stage. I walk away as well sometimes and find the serenity prayer is applicable. Hang in there and focus on the happy times.

BPS · May 29

When my wife was diagnosed over 10 years ago we talked about it one time right after diagnoses and then we just lived life. We knew things were going to change. As they did I just slowly started doing more of the things she had usually done. For years it was never an issue. She was diagnosed early so I had time. We got all our legal papers in order and just kept going. Maybe I should have watched more videos and learned more sooner, but I think it would have caused more anxiety. The last 3 1/2 years has been much harder, but for over 6 years we just kept going and made the adjustments as needed. My wife has always been pretty easy going and didn't mind me doing more around the house and she gave up driving pretty easy. If your wife is in early stage don't spend to much time worrying about what is coming, because you can't change it and you should enjoy what you can. Come here and ask questions and learn when is the time to act on issues. For now make sure you legal stuff is done and try to enjoy being with the person she is, because later she will be different. Some people will say learn all you can and they may be right because you will need to learn but if she is in early stage I think you should focus your time on living with the person that she is if you like that person.

WIGO23 · May 30

Depression has been a big challenge for me since DH diagnosis with ALZ four years ago. I had episodes in the past but with treatment, I recovered. This time is different. Medication has not worked for me nor has therapy.

As of late, what has helped is acceptance that this is not going to get better. Realization came to me that I alone can stop feeling sad nearly all the time. I can choose to find better emotional balance and stop anticipatory grief.

So, I am eating better, moving my body more, using an APP to check in on how I am feeling and journaling (especially when I have negative emotions like anger, resentment, frustration and hopelessness).

I even bought an anti-anxiety pillow recommended to me by a fellow caregiver. I was surprised that, hugging Molly, my cow shaped, weighted, pillow does in fact help. Finally, I pause/focus multiple times a day for three deep breaths—in through the nose—-out through the mouth.

I think (and hope) you can find your way to feeling and coping better. It will take time and an openness to trying things (like Molly my cow pillow 🫢). I wish you the best on this journey none of us want to walk.

SDianeL · May 31

you are experiencing anticipatory grief of what you’ve lost and what will never be. It’s normal for caregivers to feel that way. It’s OK to get counseling and medication for depression. Talk to your doctor. Come here often. It’s helps to know you’re not alone. Learn all you can about dementia caregiving. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. All very helpful. Hugs. 💜

Michele P · May 31

https://alzconnected.org/discussion/comment/273580#Comment_273580

Ask your local police about Project Lifesaver. They supply gps tracking watches to Alzheimer’s patients. Your loved one is placed in a central data base with a picture and information about them. They can be tracked anywhere in the U, S. Get a gps tracker immediately.

Michele P · May 31

If there is an Oasis Senior Services in your area, they offer free assistance finding in home care and out of home placement. They are connected to senior service agencies that offer the assistance you need.

gary105 · June 1

thanks to all for helpful comments, empathy and hugs. Still trying to digest the situation. Prayer, your comments going outside, exercise and hot tub are helping, Frustrated at the concept of it will only get worse - a failure of the medical community. We cant accept that. If they spoke that way about heart disease or cancer years ago, most of us would be dead by now. As a scientist I think there is hope.

Maru · June 1

I suspect that all of us have felt that way when we first really noticed changes and were in the process of getting a diagnosis…even in the early months after a diagnosis. So many feelings…worry, sadness, feeling lost or hopeless. It took me about a year to just accept that this is who DH is today and I don't have to worry about who or how he will be tomorrow or next month or next year. Yesterday, his dementia was on display during our weekly phone call with one of our long distance children, but even so, he kept his sense of humor. I look for those bits of sunshine from him.

My suggestions: first get all the necessary legal stuff taken care of, read everything you can about dementia so that you have a rough idea of what all you might have to deal with, then, and more to your situation, enjoy the days and moments that your DW is mostly still herself. Store up the good memories.

Michele P · June 4

https://alzconnected.org/discussion/76169/i-need-your-empathy-and-suggestions

if you are near a Mayo Clinic, get a referral to The Habit Program. You will need a diagnosis to get the referral. The program is excellent and helps the patient and caregiver. They train you both in Brain HQ, an online Brain games program that helps build neurons in the undamaged part of the brain. Look into Dr. Dean Ornish’s Lifestyle Program and The Pointer Study. Both slowed the progression.

cavenson · June 4

You may want to check to see if there is a GUIDE Program in your area. It is run by Medicare. In order to be eligible, beneficiaries must have Traditional Medicare (Part A and Part B). They also must have a confirmed dementia diagnosis and be living at home or in the community, but not in a long-term care facility. The program is free of any charge or copays. The government website gives additional information. GUIDE (Guiding an Improved Dementia Experience) Model | CMS

My husband’s neurologist referred us to the program, and a Care Navigator came to our home to complete the paperwork. I can’t speak to how beneficial the program is because we’re waiting for Medicare approval. However, it is supposed to provide support for both the person with AD and the caregiver. This support includes $ 2,600 a year for a home health aide to provide respite for the caregiver in 4-hour blocks.

gary105 · June 9

https://alzconnected.org/discussion/comment/274033#Comment_274033

thanks so much. we started free version of BrainHQ. did you get paid subscription?

persevere · June 9

https://alzconnected.org/discussion/comment/273581#Comment_273581

This is very good advice. Identical to our journey.

MsLadybug · June 10

https://alzconnected.org/discussion/comment/273806#Comment_273806

I think it is always OK to hold onto hope. My DH, who has lived with cognitive impairment from adolescent-onset hydrocephalus for his entire adult life, has been declining gradually for the last ~10 years. Last fall, he experienced multiple serious side effects from systemic spread of Botox from treatment for neurogenic bladder, which landed him in the hospital. His cognitive decline has worsened since then - maybe because he was hospitalized, or maybe because that's just the course of his unique dementia disease process. I know it is irrational, but there is a part of me that keeps hoping that just as his generalized weakness from the botulism has improved, maybe his cognitive function will improve too if the brain fog it caused might get better. I reserve the right to hope! But also at the same time, I am realistic, and I know the truth is that he now has moderately severe dementia, and that there is no current medical treatment that will reverse that, and nothing much except healthy living to prevent progression - only time will tell. I go from depression to anxiety to anger sometimes, and right now today with support and information I am in a period of relative calm. Take good care of yourself, know that you are not alone, hang out and connect deeply with people who truly care about you and your DW, and let yourself feel what you need to feel. A therapist once told me "your feelings have a shelf life - once you allow yourself to feel them fully, they will naturally transform into something else".

Michele P · June 10

https://alzconnected.org/discussion/comment/274432#Comment_274432

My husband and I were in The Habit Program at Mayo Clinic. It is an excellent program for patients and their caregivers. We were trained in Brain HQ and given free subscriptions. It’s worth every penny. My husband’ has regained cognitive function.

I need your empathy and suggestions.

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