My husband has dementia and we think that it's Alzheimer's

My husband has vascular dementia, the sudden declines, sometimes overnight, are a hallmark of that diagnosis. When he expresses worry and confusion, I say (brightly) "We're a team! Always have been, always will be!" I repeat that as needed, and it's true, no platitudes, no cliches. I think he is comforted by the words "We", "team", "always"

We have an update on Dave- Another one! His doctor now says that he has vascular dementia. This seems to fit more with what behaviors I see. They are more of step downs than a gradual decline. We finally have an appointment at Butler Hospital in Providence for his first full assessment and treatment suggestions. It's less than a month away. We have this incredible questionnaire to fill out with some very bizarre questions too. lol

Last Thursday my man turned 80. I took him out to lunch at a favorite local oceanfront restaurant. We had such a lovely time recounting a lot of crazy things that we have done and what an incredible life we've had together. We've been together 45 years and married 42 this year. I'm relishing this time with him and "milking" him for all that I can get (without tiring him out of course or making him more confused) The other afternoon he came up from his office and told me that he felt lost and was confused. It was a knife in my heart.

If any of you hear such statements what do you say?

Hi Merry. My partner has Alzheimer’s Disease. We’ve only been together 21 years, & I continue to struggle with what to say & not say in moments like the one you describe. Ron is a very bright, independent guy & hates any hint that I’m taking care of him. So I try to focus on conveying respect in his ability to work things out for himself. I say, I’m sorry to hear that. Do you want to talk about it? Or, Oh hon. That must be hard. Can I help?
That approach works better for us. You must know how your husband prefers a way that you two talk that is comfortable for him. It’s tricky for me to express compassion that doesn’t sound like I am mothering him, but I’m learning from the dementia community that it is important to affirm our partner’s dignity & ability to care for themselves.
I sense that you know how to do this & will use your experience & communication skills to know what to say in your case.

Great tip! I have started to do this too. I reassure him that I will keep him safe and that we'll work it out together. We have talked about how as a couple we have persevered through a lot and we'll do it again. Together! It's reassuring to me too.

Do you have any other tips?

Hello Bonnie- Thank you for saying this. I still sound like a commando sometimes when I need him to do something. I am not a patient person. I have to bite my lips to help me slow down so I don't put pressure on him too much. I am also complimenting him and I also apologize if I screw up.

Today was one of those days! Dave couldn't find his keys- I can't get him to settle down when I want to organize all of his important things long enough to make a decision as to where to put his "box" of things. I'm on prednisone right now so it's more difficult to hold my tongue. So, I got into "it" a bit with Dave. In the end, he answered me with a little boy's "no!"

Well, I lost it and began to laugh uncontrollably. Now mind you, I am usually a very loud laugher but it seems that when I laugh at something that Dave says or does (now)- at the ridiculousness, my laugh is a more mature type of laugh, not at all hysterical. But I couldn't stop laughing but I had to run into the bathroom. which I didn't make. Then one of my thighs cramped up and I couldn't sit down! And then I laughed even harder. And then I cleaned the bathroom! lol

He was upset, and I know he was and I would have been too but some things are just so ridiculous when they happen. If he hadn't had vascular Dementia he would have been howling. Laughter is such a great outlet that I don't want to lose it between us. I immediately explained what it was all about and he thanked me for that.

I hope that this doesn't upset anyone, this silly tale of mine about laughter. I take Vascular Dementia, any type of neurological disease very seriously. But right now, before things get too bad I can't help myself. I think that it is a tension valve.

Does any one else experience this?

We still have the capacity to laugh together and I love that. He'll joke too. I love those times.

Hello Bonnie- Thank you for saying this. I still sound like a commando sometimes when I need him to do something. I am not a patient person. I have to bite my lips to help me slow down so I don't put pressure on him too much. I am also complimenting him and I also apologize if I screw up.

Today was one of those days! Dave couldn't find his keys- I can't get him to settle down when I want to organize all of his important things long enough to make a decision as to where to put his "box" of things. I'm on prednisone right now so it's more difficult to hold my tongue. So, I got into "it" a bit with Dave. In the end, he answered me with a little boy's "no!"

Well, I lost it and began to laugh uncontrollably. Now mind you, I am usually a very loud laugher but it seems that when I laugh at something that Dave says or does (now)- at the ridiculousness, my laugh is a more mature type of laugh, not at all hysterical. But I couldn't stop laughing but I had to run into the bathroom. which I didn't make. Then one of my thighs cramped up and I couldn't sit down! And then I laughed even harder. And then I cleaned the bathroom! lol

He was upset, and I know he was and I would have been too but some things are just so ridiculous when they happen. If he hadn't had vascular Dementia he would have been howling. Laughter is such a great outlet that I don't want to lose it between us. I immediately explained what it was all about and he thanked me for that.

I hope that this doesn't upset anyone, this silly tale of mine about laughter. I take Vascular Dementia, any type of neurological disease very seriously. But right now, before things get too bad I can't help myself. I think that it is a tension valve.

Does any one else experience this?

We still have the capacity to laugh together and I love that. He'll joke too. I love those times.

Yes, Will and I learned years ago to laugh at things that before were so dramatic. He jokes more than I do and sometimes he is just plain silly, and I call him “my silly guy” - all in fun. Recently He seems to know when I need time to settle down, as we are moving and packing and my frustration level gets very low! He tells me to stop and start again tomorrow. He used to be a workaholic and made sure I was too, and stop was not in his vocabulary. He has slowed down considerably and is no longer driven to constantly work, and I benefit from this change. I can tell Dementia has played a big part in this change because it takes longer for him to figure out how to do something. What used to take 10 minutes now takes half an hour. I’m trying to be more patient with him and remind myself he is sick and doing the best that he can. Now I am becoming the workaholic! Now that’s funny!!

Well Merry, at least you got your bathroom cleaned. You’re ahead of me, & you got a good laugh too. We steal the little moments now. A helpful comment I read from many people on my two caregiver sites is, Don’t beat yourself up about it.” I really appreciate that advice & am learning to take it to heart. We are doing a very difficult job for which we had little to no training & it won’t end until the men we love leave us forever. So I say, “Let’s cut ourselves some slack,” at least today, to be our own valentines!

The neurologist emphasized that with vascular dementia, the person has much difficulty with going from step 1, to 2, to 3, to reach 4. So, I purposefully give direction in short sentences, in order. Structure and fewer choices are important. I pick the shirt, hand it to him so the armhole is lined up with the correct arm, he does the rest. I do the top button, he does the rest. I put out the right shoes, he puts them on, etc. He is no longer able to tie laces, so I just bought slip-ons, keeping positive- "These are so comfy." He is no longer able to make sense of a menu, I cheerily say, "I know your favorites!" and say that to the server too- we all laugh.
I think it's very important to be calm and cheerful, as hard as it may be. I believe the person with vascular dementia observes and picks up the caregiver's emotions very quickly and mirrors them and may start to spiral if the emotions are those of upset or worry.