Should I have “the talk” or not?

LorettaP

In a previous post, many of you gave me ideas to get my DH not to drive anymore, as this is what was mandated by his neurologist. This morning, we were getting ready to go to the lumberyard when my DH said, “If you’d let me drive I could just go by myself and you wouldn’t have to go, but you don’t want me to drive!!” (Going to the lumber yard is not really something I enjoy.) I said, “It’s not me that doesn’t want you to drive, it’s the doctor, and it’s for your safety and the safety of others! I did not want this!” He proceeded to argue and I just ignored him. About 15mins later, he comes to me and says “I owe you an apology for how I acted. I know that you were looking out for my safety, as well as the safety of others. And the doctor is probably right that I shouldn’t drive!” WHAT?? I was speechless!! Does he get it? That being said, should I have the conversation regarding his diagnosis of Alzheimer’s (as others have suggested), asking for his input on care in the future, since I won’t be able to care for him due to a pre-existing health condition? And, yes, he once said he’d blow his brain out if he were ever a burden on anyone years ago...  Irregardless, the question is, do I have the “Honey do you have any preferences or ideas for your care in the future when your Alzheimer’s progresses and I’m unable to take care of you?”  (BTW, I drove to the lumberyard and he was fine with it!)

M1

Loretta I think you go with your gut on this one. We have had these talks-both about cancer, and more rarely about dementia. My partner has occasional moments of insight, less as time goes on.  We haven't talked about placement, but she knows she would be lost if something happened to me.  But I would put the guns up before you have a go at it, regardless.  I did. Finally hid the last .22 pistol she kept by her bed, and she hasn't missed it.

1962ART

Hi LorettaP:  You are doing great, in my opinion.  Sometimes (rarely) my DH will yell at me for "trying to control" him and then later meekly excuse himself for his outburst.  I feel sorry for both of us.  I feel so sad, because the last thing I want is for him to feel controlled.  And yet, that is exactly what has happened in our relationship.  It's part of the disease path, I have learned from this message board.  

Many people have posted about getting legal help to advise you in terms of wills, trusts, power of attorney, etc.  Different levels of help are available in locations across the country.  Maybe this planning could include that future care planning discussion with him.  I have not had that conversation with my DH.  He has a special mix of Vascular Dementia, Alzheimers and Frontotemporal stroke.  So, things are progressing slowly and will, hopefully, continue that way.    Maybe I am avoiding the eventual, but we just are not close to those decisions yet.

I have had the hard discussions with him about alcohol consumption and Internet pornography use.  With the help of his doctors, we got some medication that is used in FTD treatment.  This seems to help some with his impulse control, surly temperament, etc.  Not a cure-all, but I feel like he less nasty to me.  I am saying this about the nicest guy in the world that I married 45 years ago.

Whew, lots to say.  Hang in there. Every LO is different.  Every relationship is different also. 

Iris L.

Loretta, you might say, since we're both getting older, let's talk about some ideas about what to do.  That sounds natural.  Don't make it all about him.  

Iris

Cynbar

I think it's a good idea to have some idea what the realistic options will be before having "the talk." That will be your framework. Is there any family that could care for him or take him in? Is he a veteran, could he go to a veteran's home? What will your finances allow, assisted living and memory care are private pay only in many states ? Are there small, private care homes in your area and could you afford that? Are there extended care communities with different levels --- independent, assisted living and memory care --- near you ? Will you need to apply for Medicaid soon? What will be the criteria for saying that you can no longer care for him? Will it need to be a nursing home, remembering that he'll have to require a certain level of care before admission? All of these questions will need to be answered before you come up with a plan, or know what his options will be..

LadyTexan

Yes, have the important conversations. You have received many good suggestions on how to do this with a greater chance of success. I love Iris's suggestion for the conversation starter. 

Over the years, my husband stated that he wanted to die, under certain conditions. For example, contracting Amyotrophic lateral sclerosis (ALS), a disease that killed his sister. When he had his last painful flare up of hemorrhoids, he asked me to kill him. For the record, I will not kill him. 

DH also states (to me and his healthcare team) that he has lived a full life. In his words, he "hasn't missed a lick". Those statements give me comfort.

You are doing very well on a very difficult journey. 

Ed1937

LorettaP wrote:

Irregardless, the question is, do I have the “Honey do you have any preferences or ideas for your care in the future when your Alzheimer’s progresses and I’m unable to take care of you?”  

I'd suggest that you don't use those words if you have the "talk". You know him best, but consider this. "I think you should know what I'd want if I became bedridden from a car accident or something. I'd want to be (fill in the blank) . What would you like if that happened to me?" That way he won't think that you're wanting to get rid of him. Just a thought.