How did you get through the diagnosis?

Trish M

My partner has been diagnosed with Alzheimer’s disease, he is 72 and I’m 64. Three years ago last August I lost my 91 year old mother to Alzheimer’s after a 6 year battle and I have no illusions about where this disease is going. I don’t have any friends or family that has lost their beloved this way, apart from my father, but he is also gone. There is not an in person support group within 25 miles, but I will investigate further. My partner can still do a great deal, he is still able to drive and manage his day to day activities but the deficits are jarring and taking up speed. He knows what is happening to him at this point. I remember my mother telling me, so early on, that there was “a black hole” in her brain. That window when they are suffering. It kills me. I am overwhelmed with grief at the prospect of losing him. I just feel like the world stopped in September when i had the “come to Jesus moment” when his friends and family approached me with concerns that echoed my own. Anyway, just sharing

Ed1937

Trish, I'm so sorry. The diagnosis is always very hard.

There may not be any support groups near you, but you might be able to find some virtual groups you could join. And this forum is really a great place, where everybody gets along and cares for one another. When someone is down, others will come to offer support and/or suggestions to help pull them back up. I'm glad you found us. Welcome to the best forum on the 'net.

M1

I have found this forum to be more support than any in person group i have attended (the scope is far larger, for one thing).

And yes, the grief is terrible.

Look on the general caregivers page for a link to a threead or group for new members-jeanne C has tried to pull together a lot of things that are frequently referenced early on. Getting your legal affairs in order tops the list, along with addressing your bucket list while you can and thinking ahead about financing long-term care.

The decision about how long to drive is always problematic and difficult, but such a huge safety issue. If his deficits are increasing, please do this earlier rather than later.

Read a lot of threads and you will learn tons. Having it affect your spouse is very different from your parent i suspect.

Jeanne C.

Hi Trish. Sorry you're going through this. The time around getting a diagnosis for my husband was rough. A lot of anger, tears, exhaustion, and fear. For both of us. You definitely grieve and it comes in waves. I think the hardest thing is that your person can't really help you carry the load anymore. That's what makes caring for your spouse so hard.

Be kind to yourself. Ask for and accept help (that was the first bit of advice Ed gave me when I joined). You're going to have a lot to deal with as you are starting this journey. I suggest taking it in small chunks.

M1 mentioned the group where I've been trying to collect helpful information that comes up a lot.

new caregiver group: https://alzconnected.org/group/32-new-caregiver-help

This forum has been a lifeline for me. Don't hesitate to ask questions, vent, etc.

CindyBum

Hello, Trish. I’m so sorry. I could have written your post, particularly about your grief and your heartbreak at your DH still knowing he has this disease. I have shed so many tears these last few years about both. It’s overwhelming and excruciating.

A friend connected me with a therapist about 3 months ago. We zoom. Having her has helped me immensely, as has this wonderful group here. Lean on us. We’re here for you.

tryingtodurvive

https://alzconnected.org/discussion/68107/how-did-you-get-through-the-diagnosis

Me and my DH were in the same position. I’m 62 and he is 73. He was diagnosed about 4 years ago and it crushed my soul. One thing that has totally changed everything was for the first time joining a small church. It has made such a difference in our lives in a multitude of ways. We have made so many special friends who are so loving and accepting of him. They are always kind and inclusive. We have a thriving social life now with people that love us just as we are. It improves his mood. God is good and I’ve gained so much acceptance and patience. I have an indescribable joy and peace where there was nothing but despair and anger before. It has totally changed our journey. Good luck!

Nowhere

My husband was sixty-two and I fifty-two when we began this journey sixteen years ago. I certainly identify with your post. It’s scary projecting into the future, but doing so is necessary for your partner to share his care choices and to make certain all his legal paperwork moving forward is in order, so that his wishes can be honored and his finances be protected (Advanced Directive, Will, Trust). He also will need to designate a Power of Attorney to speak to those choices when he is no longer able to do so. There are ways to research and slow down the disease to consider, as well.

It’s good you found this group. There is a collective wealth of experience and knowledge here, as well as compassion. So sorry you are both going through this!