Spouse newly diagnosed and I am overwhelmed

Marcee

Hi everyone,

My name is Marci.  My husband was diagnosed with Vascular Dementia two weeks ago and our lives have been thrown into complete chaos.  

Hoping to learn how best to care for him.  I don't even know what questions to ask yet. 

I would really love to be part of a support group.

Thanks for reading. 

Joe C.

Marcee, Welcome but I am sorry you needed to seek out our community. There are a lot of great people here with a wealth of experience. One of the things that you should put a the top of your to do list is seeing a Certified Elder Law Attorney (CELA) and get your legal and financial house in order. It may seam early for this but putting it off can have disastrous results down the road. I wish you the best on this journey.

Ed1937

Hi Marci. Welcome to the forum. Sorry you need to be here, but you found a good place for help and understanding. Post anything that concerns you. There are not limits on what you can post. I'm giving you a link to another thread that should give you an excellent start. https://www.alzconnected.org/discussion.aspx?g=posts&t=2147562300  Others might add to it, so keep an eye on it.

MaryG123

Hi Marcee,

Welcome to the forum.  The folks here are wonderful and have so much great advice.  You’ve come to a good place.  I’m sorry about your husband’s diagnosis.  I know it’s scary and sad but, if others can manage it, you can too.  Hugs. (())

sandwichone123

Welcome Marcee,

One thing with dementia is that support is essential. All the questions you have--your pressing concerns, fears, and frustrations are rarely answered by the professionals. This group, and hopefully a local support group are helpful in letting you know you're not alone, giving tips from others that have faced similar challenges, and suggesting solutions you may never have thought of.

One common thread is that the first priority as soon as you know there is an issue--get your legal house in order. See a CELA--certified elder law attorney as soon as possible, whether or not you or your spouse are elderly.

M1

Hi Marcee. This group can be a lifesaver. If you read a lot of threads, you will learn a ton and recognize concerns that you hadn't even verbalized yet. I echo everyone else's suggestions about an elder law attorney, you can find them listed by location at nelf.org.  they can not only help with wills and powers of attorney (very, very important) but also with financial planning for potential memory care needs in the future.  

good luck, we are all in this together.

RobertsBrown

Hi Marcee,

The hardest part for me was getting past the shock and realizing that this was really happening. As a result, I was busy reacting to things that were happening instead of planning for the next thing, and the next thing, and the next. It's emotional, and I did a lot better once I realized that everything was changing forever, and I started planning.

Seeing a CELA is a great start, as is this forum, and especially seeking out friends and family that might have similar experiences. If I could go back in time for a do-over, the single biggest mistake I made was trying to hold on to my old life while transitioning to life as a caregiver. I waited too long, let a lot of choices 'happen' instead of making them, etc.  I didn't fully commit fast enough, and the cost was/is extraordinary.

Hang in there.

You can do this.

Crushed

Hi Marcee  welcome to our bizarre world  My mother had vascular dementia from 1999 until 2010 and my wife has had Alzheimer's  since 2009.  As a lawyer i need to emphasize your need to get your legal house in order 

We can help you   It helps a lot if you fill in your profile.   we need your states ages and any dependents   they all affect any advice 

We are all here for one another  

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toolbeltexpert

Marcee welcome to the forum. Sorry for the reason you had to find us. I guess I will reinforce what others have said. I took the advice to get a dpoa when I first joined here and glad I did. 

The next thing I would recommend is learning as much as you can, vascular dementia progresses faster than Alzheimers. 

Teepa snow is a good person to watch as well are Care blazers.

Your life has already started to change, learning to care for you is another important thing to start doing. 

Keep posting, keep reading.

Stewart 

Rescue mom

Somebody here, I think Robert, said something I rarely mention, but I also believe is big. I tried to hang on to our old life too long, and it frustrated DH and me both. My DH has Alzheimer’s, I thought for way too long if I could explain things to him better, or put up more signs, or get a better computer, or have a designated place for things, etc etc.  he’d “get better” or “he could make it work.”  Or if I asked him about a matter we used to do together, like insurance, vacation, or car repair, that might ring his bell. No, it just frustrates him.

The sad fact is, he has a brain disease and was losing abilities fast. No matter how you explain, or how many times/ways you remind, it won’t help, or not for long. I had to learn to just “do”  things (that’s really hard)  and how to stop problems before they develop. Much like baby-proofing a house. You have to change (and take charge) because he cannot. Or more correctly, he WILL change, often dramatically, and nothing can be done about that. You have to change to deal with his situation.

My standard advice is to meet ASAP with your local Alzheimer’s Association (they cover all dementias) . They will meet private with you, for free, professional counselors,  and help you get your ducks in a row, help you see issues ahead and possible approaches/solutions..  They will also give you lists of local resources and experts—lawyers, accountants, medical pros, home health help, adult day care, etc. They were invaluable to me in early days, when I was trying to figure out what’s next.

The lawyer is super important, asap.

This board right here has the best, most helpful practical answers to problems. But sometimes we need a local service/expert, and the AA helps with that.

Gig Harbor

Welcome Marcee You don’t say if you have family close by or how incapacitated your husband is but one thing we often don’t plan for is what if we get sick. Would he be able to stay alone and fend for himself? Would he know to call 911 for an emergency? It is good to have a plan in place in case someone has to step in and help you. It is overwhelming at first but as you begin to make plans and organize things you will gain a sense of control. You can never plan too soon but you can definitely leave it too late. A good elder care attorney will help you set up wills, trusts and POA’s. Hopefully your husband is still able to help you with things but always check on him if he is handling the finances. Once they start to make mistakes you need to be aware of them. Good luck on this journey.

Paris20

Hi Marcee, you’ve come to the right place. You can ask any question, even rant freely, since we’ve all “been there.” You’ll find helpful information, advice, and support in this non-judgment zone. 

There are two terms you’ll read here that are important parts of daily existence for many of us. The first is anasognosia, which refers to the inability of our spouse to understand his illness. It isn’t denial. It’s part of having a broken brain. For example, my husband, diagnosed with Alzheimer’s Disease in 2015, thinks he is fine. Even after a paralyzing stroke in May, he continues to believe that nothing has changed in his life. He offers to drive me to doctor appointments, talks about taking a trip to Europe, and falls out of his wheelchair if no one is around because he doesn’t realize he had a stroke.

The second word is fiblet. You may find that your husband’s beliefs can be dangerous, impossible, or just plain nonsensical. You cannot try to convince him otherwise. It’s his dementia talking. Therefore, in order to wiggle out of potential  trouble it can be helpful to make up a story, a small lie, i.e., a fiblet, that can put a stop to the hassle. When my husband used to ask for his car keys I’d casually say I was in the mood to drive and we’d look for his keys upon our return. It worked and he forgot about those keys as soon as the garage door closed.

Sligo177

Hi Marcee,

You will find support, and solid advice on this forum, from people who have been through similar situations or are going through them.  I have gotten so much help here. I know what you mean, what questions to ask - new questions just seem to pop up all the time though, and when they do, there's something here for you.  Agree with having an elder law person's help, that was the first thing I did.