Helping my husband accept his diagnosis

Palmetto Peg

My husband has severe memory issues and is having an MRI on Thursday after failing the memory tests and at even forgetting the visit to the doctor for the tests..  He forgets most day to day appointments and agonizes over his phone calendar trying to get it right.  His doctor has said he has moderate cognitive impairment and likely Alzheimer's.  We will find out the MRI results on August 3.  He is very worried and stressed and I know he won't accept a diagnosis of Alzheimer's without becoming very depressed and angry.  How can I help him?

terei

Reassuring him that you are ‘there for him’ + love him.    Discussion of his condition is rarely helpful IME.    If he asks about his illness, I would refer to his ‘memory’ problems + not ‘Alzheimer’s’ per se.  At some point, his memory loop with be reduced to mere minutes.  It will do no good to give reminders, write notes, discuss alternatives, etc(he may not be at that point yet)  Asking his opinion or to make choices is placing him in a situation he can no longer handle.    His behavior about his written calendar/schedule is just the beginning.

You will learn to tell him about upcoming events just before they happen.  Telling him ‘you have a dr appointment next Tuesday’ will invite repeated questions for the following week that will increase his anxiety + drive you to the edge of insanity.

The less information he has about almost ANYTHING will make your life (+ his) much much easier.   

M1

Welcome to the forum Peg.  There is lots of helpful information to be had here.  I agree that it's generally not useful to discuss his diagnosis with him--it won't help, I also had to learn this the hard way.  Also, just for your sake rather than his, don't put too much stake in the MRI:  unlikely to be diagnostic.  The docs (and I am one, so I know) tend to underestimate/understate the degree of impairment, I think they don't want to upset the families.  If you google the seven stages of dementia (someone else may give you a link), you can get a handle on where he is on the spectrum.  From what you're describing, my guess is stage 3 or 4.  Read also about anosognosia--inability to recognize that there is a deficit.  A lot of PWD have it and insist they are fine.  There is no point in arguing with them.

If you read a lot of threads, you'll see some important early steps:  get your legal affairs in order (powers of attorney, wills, etc.) while he still can.  Also plan way ahead financially:  do you have long-term care insurance?  If he needs placement eventually, would he need Medicaid eligibility?  That requires careful asset management and most consult early with a certified elder care attorney (CELA).

Good luck...

Quilting brings calm

Resources - this forum. There’s also a solutions forum here too, 

The book - The 36 hour day - this is a must 

A PDF on the internet titled ‘Understanding the Dementia Experience’.

If you have not done so, get a health care power  of attorney, a durable power of attorney, and discuss your estate with a lawyer while your husband can still give consent. 

DougC

I was diagnosed  with Alzheimers a few months ago. 

It was hard, cried alot.  Still working thru what the disease means to me.  It takes time to accept.  

abc123

Attention Doug C.

I am sorry to hear about your diagnosis. I can only imagine what you are going through. We have a forum here called  "I have alzheimer's or another dementia: You can meet others who are also dealing with the same issues as you. You are certainly welcomed to post in any forum, There are some very knowledgeable people there, such as Iris L, and Michael Ellendogen. Doug, I'm glad you found us! There are many things to learn that will give you a better quality of life. Good luck to you Doug!

abc123

Hi Peg. Welcome to our little online family. You will find knowledge and compassion here. When my mom was first diagnosed the doctor told her she has alz. I feel certain that she already knew it because her mother died from alz. Mom had taken care of her.. She questioned dad about it and they talked about it. Going forward we never used the words alz or dementia in her presence. We never talked about her diagnosis with her again. When she would ask, we would tell her she has a memory problem. I do not discuss anything important with her because it only upsets her. Things go much smoother when her life is simplified. Less noise, less people, less outings. When your loved one ask, just tell him he has a slight memory problem and quickly change the subject. About the MRI, has he had one before? Do you know what to expect? Should you request an open MRI/ Will he stay still during the procedure? My dad had an MRI this past winter because he slipped on ice and hit his head twice. It turned out he's claustrophobic. I had to find a location that offered open MRI's AND he had to be sedated. It's hard. Everything about this disease is hard and it gets harder everyday, Keeping our loved ones calm, keeping their trust in us and making them feel safe is what I try to do. I don't share any serious information with her because it causes her grief  I'm sorry you have to be here. Please let us know how it goes. Can you speak to his doctor before the MRI and tell him not to tell your husband the results? Sending you good wishes.

Iris L.

Welcome DougC.  You have come to a place where you will find help and support for this new time of your life.  Please join us patients on the "I Have Alzheimer's " or the "Younger Onset" board.  You can begin your own thread by clicking on the green "Add Topic" tab at the top of the main page. 

Iris

Palmetto Peg

Thank you all for your suggestions.  Good ideas about not talking about appointments too soon - it does make him anxious and then he keeps checking his calendar like he knows he has something to do but doesn't know what it is or when it is.  I am definitely going to read The 36-Hour Day.  I will spend time reading posts here, too.  Fortunately, not too long ago we met with an Estate Attorney and got our affairs in good shape.  I am going to call and meet with her as soon as we have some sort of diagnosis so I can find out what I need to do because of our change in circumstances.  I hope a diagnosis will also help me be more patient......it's hard right now because I am not sure if he just isn't listening sometimes or can't remember something we talked about yesterday.  Thanks again!!!!

Cynbar

You will have to accept that his brain already isn't working right, and he likely won't be able to fully process the news. Already, you need to approach things with his comfort as the goal. Provide a lot of reassurance, say "We'll get through this together" or similar. Try to give him some hope, especially if one of the Alzheimers drugs like Aricept is prescribed. Don't try to reason or explain the disease progression, by your description he won't be able to go there with you. Let him vent, and redirect as much as you can. Ask him questions about his wishes for care in a low key way, more working them into a conversation, but don't be surprised if he has lost the insight to do this. You will have to be the decision maker going forward, but that's another discussion entirely. I thought my DH would want to talk about his diagnosis but he really didn't, he was always very verbal but that had deserted him by the time of diagnosis. But in general, try to gently guide him through the shock and upset, without forcing him to examine what lies ahead since he can't fully comprehend it.

Palmetto Peg

I am so glad I found this forum.  My husband was an attorney and always wanted all the facts but I can see it will be better to provide fewer facts and more reassurance.  I know the road ahead will be hard, and for me it will be best to get as much information as I can about the stages and what might help during a particular time.  We haven't shared anything with the kids yet - he has two and I have two.  Is there a good time when they should know?  None of them live near us, and I have a rather rocky relationship with my step children, so I don't want to tell them too late and have them feel I withheld information from them.  Should I be asking my husband what he wants to share with the kids?

Emily 123

It’s helpful to let the doctor know how much your loved one can handle ahead of time. My Mom knows her memory is not what it used to be, I told her caregivers a diagnosis was going to be stressful,  so there was just talk about her memory being somewhat worse when she got tested, nothing else- the AD diagnosis was shared with me as HCPOA.  She had all her ducks in a row for POA, living will, etc, so we just tell her we’re doing things for her as planned & not to worry about that ‘stuff’.  All bills, emails, etc that might be cues are intercepted. 

Hopefully you will see good  results by not telling him about appointments until it’s time to get ready to go.  With my mom it would just throw her off and she’d spend all morning trying to remember about it. Any of those things, like appointments, bills, etc, can cause stress. Try to remove cues for them. As they say, routine, routine, routine, and keeping things simple, steady, and calm is key.   Multi-step tasks become beyond them as they can’t hold onto what they just did + what’s the next step at the same time. Scale things down for success…mom could slice potatoes for a stew to help me, but couldn’t put it together, so she would do that to help make dinner. 

Still, it’s very hard to just jump in there and take over when your loved one seems just fine outwardly. So very difficult to realise that it isn’t always best  to explain and reason with them, or that you don’t have to have them involved with day to day decisions that need to be made. There’s definitely a learning curve about that, and how to just agree with them and let things go.

Quilting brings calm

Are you your  husbands’ POA and medical POA?  I’d get  that locked down before you tell the kids.  Others besides me are more  qualified to discuss kids/step kids, but I know several posters have reported issues between step kids and the spouse.  It’s like each thinks they are the only  ones that should be managing the PWDs care, finances and treatment. For other families, the step children disappear,  leaving  the spouse to do it all,   Your elder law attorney might have some suggestions for you. 

If you think the step kids care, I would encourage them to visit their Dad and see if they approach you with concerns. 

abc123

Hi Peg,

I want to apologize for asking questions about MRI procedure, I misunderstood your post. I realize that your husband has already had the MRI. 

I agree with the others about getting legal things locked down ASAP. DPOA is a must. Bringing in help sooner than later. You may already have a housekeeper coming in. 

Teepa Snow videos on youtube are a huge blessing. Teepa has devoted her life to helping people help their LO's with dementia. 

Does your DH have a close relationship with his and your children? It would be nice if he does. A lot of friends and relatives will fall from your life now, that could include the children. You will find help and support from people you didn't even know existed. My dads neighbors have become family to us. Three years ago we didn't know their names.

Please keep us in the loop. You have us now. Some of us are believers and praying folks. Some of us are not. Some of us are tall, some of us are short. But when we come to this forum we are all family and we support each other. I don't know what I would do without the people here. Not one day goes by when someone here is not on my heart and in my prayers. I'm sorry you have to be here Peg, but please know that we have your back. You have us now.

Palmetto Peg

I am so grateful for all of the helpful responses.  To answer a few of the questions - yes I am his medical and legal POA.  We have had great advice in setting up our estate.  I will be asking our estate attorney what I should do as he is also MY medical and legal POA.  He is probably okay right now, but soon I will need to change it to my oldest son.  My children - both boys - like and respect my husband a lot and will do whatever they can to help.  

The MRI is not until Thursday.  My husband is not claustrophobic and I am pretty sure he will do okay as far as staying still.  Our doctor predicts Alzheimer's based on the loss of memory,  inability to answer questions or do the clock on the memory test, and also the fact that my husband just had a complete cardiac workup with no findings of any vascular problems.  His mother had Lewy Body Dementia, but there are no symptoms of that, either.  I guess it is partly a process of ruling things out right now, but it is clear something is very wrong.  I want the diagnosis and some predictions of how fast it may move so I can make some decisions about my husband driving, paying bills, etc.  He has made quite a few mistakes on the bills, but so far they have been fairly easy to sort out.  His driving makes me crazy - he is on edge and does a lot of fast braking and swerving at cars merging into traffic that are in no way any kind of threat to us.  

I will keep reading all of the good information here, and will update you kind people as we get some additional medical information.  We are going away next week into the NC mountains, and I am hoping a week with no commitments will do us both good!  Thanks again!!!

Laurie1282

Hello, Palmetto Peg!  It sounds like you and I are in about the same place in this process.  My husband was diagnosed with ALZ stage 3-4 in January.  He never wants to talk about it and just goes on with life as usual.  Her was very sad and quiet for a few weeks but now doesn't even mention it.  He did ask on his own if I would take over our joint finances since he was making mistakes in bill paying, etc. I am thankful for that.  One of his big issues is forgetting words and a couple of times he apologized for not being able to articulate his thoughts.  This is really hard for him as a former counselor.  I just try to listen with patience, try not to correct him and move on.  When he can't figure out the remote control or the oven or his phone, I just help him as though it's the first time I had to help instead of the millionth!  It's hard...

I had a big a-hah moment from suggestions from this forum last week.  I have been stressing about how to convince him to move from our large old home with a huge yard to a smaller place.  He does not want to leave. Several comments helped me realize that even though he acts "normal" most of the time, he has probably lost much of his ability to reason even at these earlier stages.  I was getting really frustrated with trying to help him understand all the reasons we should downsize.  Now I understand that he probably just doesn't get it and I'll have to make the decision myself eventually.  I think this is probably why he doesn't feel the need to talk about his diagnosis and you may discover this is true with your husband as well.

I wish you well!

Sjodry

Peg, welcome! 

This site is so helpful. You have gotten great responses here.

I will add one thing that was helpful with my mom. While I didn’t spend a great deal of time talking about the illness with my mom, she still had many very high-functioning cognitive moments and always expressed huge frustration at searching and not finding words. It is difficult to watch them search for words, recognize that they can’t (and in my mom’s case..usually throw out a frustrated expletive instead). I simply explained that some days the words come and sometimes they don’t. Or it’s okay mom, you can tell me in a few minutes when you think of it. In my mom’s case, often that was enough in the moment to help her frustration.

It is definitely a challenging journey, but you have lots of support here!

Take care.

Sandy

Cynbar

Peg, I just want to mention that the driving is a huge liability issue. Your husband as an attorney would realize this, but has probably lost the ability to make reasonable decisions and that includes about driving. Executive function goes early in this process. Once a person has a dementia diagnosis ---- or even a probable diagnosis with testing going on ------they would be at huge risk of financial devastation in the event of an accident, even if not at fault. Anyone involved could and probably would sue you, and likely win. This of course is in addition to the moral dilemma of causing harm to someone else. My DH thankfully stopped driving fairly easily, but many posters have a much harder time. There is an ongoing thread now over on the Spouse and Caregivers Forum, you may want to check it out. But stopping the driving should be at the top of your agenda.

jfkoc

Hi Peg...

I would add a couple of things;

make certain POA is durable

read all you can about "non-medical care" and care giving in general....I suggest Teepa Snow, Naomi Feil and John Zeisel are good to google

two words to keep in mind...approach and attitude

Palmetto Peg

More good information.  The driving issue had not occurred to me - about the liability if he has an accident even if the diagnosis isn't complete.  I'm going to have to wait until after we see the doctor and get a diagnosis, and then I will try to reason with the lawyer part of him.  In the meantime, I will just continue to offer (insist) on driving.  Fortunately, he really doesn't like to drive and it isn't hard to persuade him to let me do it.  Where we live, he only needs to drive a mile to the clubhouse to play golf, and we go to the gym together so I will just get behind the wheel.  So many big changes ahead for us....sigh.....