New here and scared

Ronda 156

Hello, I am new to support groups and to being a caregiver. My husband of 38 years started having memory issues in 2019 but we thought it was just stress and aging until last year he also starting having speech issues and even worse memory issues. After several doctor visits and test, we were told he had PPA (primary progressive aphasia) a form of dementia. It was a very scary thing for us. We had watched his mom and sister both suffer with and die from this type of dieses. He was forced to retire 6 months early. Due to the issues he is unable to even work part time. He has now started thinking there are other people in the house when its just us and he is seeing 2 of me, one nice and happy and one mean. We have no family in the are and no kids. I feel so scared and alone. We meet with the neurologist again on Friday. He is only 60 yrs. old.

CindyBum

Hello. Welcome to the group and I'm so sorry you had to join us. I am relatively new here and have found a bit of comfort in knowing there are other people out there who are ahead of me on this terrible path, as well as those like you who are new here like me too. I feel scared and alone all the time too. Someone pointed me to a thread called "The Calvary isn't Coming", which described that aloneness and the reality of hoping family will step in to help, when they probably won't. Facing that reality is helpful, I've found. When I hang out in the wishing this all weren't true, I sob like a damn baby. Of course, when I see the moments when it's clear my SO has dementia and isn't just overly anxious and stressed from decades of caring for her two parents, I also sob like a damn baby. I literally cried my contacts out of my eyes last weekend. That's a new one.

This is a difficult path and there's no getting around that reality. But, the folks here listen, they offer incredible advice quite often, and reading stories of others is super, super helpful.

All I can say is keep reaching out and remember to breathe, and to cry, when you need to.

Vitruvius

My DW has the Semantic Variant of PPA, which in turn is a variant of FTD. DW was mid 60s when she started showing symptoms. There are three identified variants of PPA, in decending degree of occurrence, Logopenic Variant PPA (lvPPA), Nonfluent variant PPA (nfvPPA), Semantic Variant PPA (svPPA). I would suggest becoming familiar with these variants to help you understand symptoms as they develop.

From my experience, DW's form of dementia has not involved any serious behavioral issues as can happen with other types of dementia. But there is confusion and anxiety associated with progressive dementia and medication can help mitigate this. The symptoms you describe were common for my DW who eventually stop recognizing me as her husband fairly early in her progression. Be ready for these potentials but don't overly stress about things that "might" develop until they actually do.

The number one recommendation at this stage is to make sure you get all your legal affairs in order, first of all a DPOA, HIPPA release, and trusts, etc. as appropriate. If you haven't already done so see a CELA asap.

My DW is in early Stage 7 and my heart goes out to you. Stay strong, seek out community resources such as adult day care programs geared for PWD, I had my DW in such a program for a while and it was an enormous relief from 24/7 caregiving.

White Crane

Dear Ronda, welcome to the forum. I’m sorry you need to be here but it’s a good place to find help and support. While I’m not familiar with PPA, there are others here who are, and they will comment. My husband has Alzheimer’s. Regardless of the type of dementia, we are all caregivers and all need each others support. One of the first things you need to do if you haven’t done it already is to contact an elder care attorney. They will be able to help you get your financial affairs in order and your DPOAs. This is extremely important should not be put off. Post frequently on this form and ask all the questions you need to ask. You will find a very supportive network of people here. We’re always willing to help you in anyway we can. Sending hugs.

Brenda

SDianeL

Ronda 156. When I read your post about being scared, I cried. I know exactly how you feel. Sadly, many of us here do know. These terrible diseases are terrifying and heartbreaking. My DH was diagnosed with Dementia. They think FTD. He's 78 and I'm 75. We've also been married 38 years. Learn all you can about the disease and reach out for support here and other places. As others have said first priority is to meet with an Elder Care Attorney and get a DPOA right away. Don't wait. I'm so glad I did. Within a few months my DH could no longer read & understand documents or sign his name. I've used it several times in the last 6 months. Also look into filing for SSDI so you will get Medicare. If you financially qualify in many states you can also get Medicaid which has many other benefits that Medicare doesn't. Make sure you write down his behaviors when you see the Neurologist and other doctors. I've found that the stress of going makes me forget things I wanted to tell them. So I keep a running list of his behaviors. There are medications that can help the delusions and hallucinations. My DH has problems with words too. I've found that if I look at him and speak more slowly he can comprehend more. I also ask him to look at me when I speak to him because he usually wants to look away. I also ask him to point to whatever he's trying to tell me and I can usually figure it out. Keep coming here when you can to vent, for support and advice. This forum is a life saver for me. It has a search feature (top right) and you can search for PPA and look for virtual support groups or in person groups in your area. Sending a virtual hug.

Caro_Lynne

Hang in there Ronda, It is a scary and lonely road. This forum has provided me with much insight and support when I needed it. We're here for you.

My LO still asks me "where is Caro?" I gave up telling him it was me since he didn't believe me. Now I just tell him she'll be back soon. Sometimes I go out to the patio and come back in and he says, Oh there you are! I often look at him and wander what he is thinking in his broken brain; so sad.

M1

Welcome Ronda. As said above, be sure and tell the neurologist that he is having delusions (the two of you, etc). There are definitely medications that can tamp that down. Take a written list if you have to, or call ahead of time, so that you don't have to have this discussion in front of him, which may make him defensive and resistant.

There are many very kind and supportive and wise people here. It's a very isolating disease, but this helps. A local support group for you is another possibility--ask the neurologist (or better yet the nurse).

Jeanne C.

Welcome Ronda - you've found a good place.

My husband (64, FTD) used to think there were 2 of me. "Regular Jeannie" and "the mean lady with the medicine." I'm not sure if it's his meds that stopped that or if it's that I'm calmer. Probably some of each. He still has delusions but they're mostly manageable.

Yes, this is scary. I suggest taking it one step at a time. Get your legal stuff in order (CELA). And take care of yourself, too. The group on this forum will offer advice (they saved me!) and a sympathetic ear. I feel like I have friends who get it now. We're here for you.