I wasn't sure how to express the topic but what I mean is did your spouse learn of the dx or not? My dh has seen the doctor's report that he has vascular dementia but I'm sure he doesn't believe it. We need to discuss financial matters but he is very resistant to admit he has problems. Just as an example we are now looking into buying a car and he has changed from the conservative spender to wanting more than I think we should spend. So how now to approach this when the people we are dealing with want to talk with him and I know he doesn't have the capacity to do financial dealing as before. I have told him that he has memory problems and of course he says he doesn't. Then there is the dealings with our daughter who is very manipulative. As with some father/daughter relations mom can be the "bad guy" when no is the only correct answer. Since we've only been in this nightmare for a short time, I'd be interested in how others have handled this when you and your lo first began this awful journey.
flo 39, I took my husband for his "annual physical" - my excuse to get him to the doctor's office - and after convincing the doctor to test him and to do an MRI and set up an appointment with a neurologist - and the neurologist did a PET scan and CT, and another test and told him that he had Alzheimer's. When we got home (after stopping at Verizon and purchasing chaperone phones so that I would be able to track him if he got lost), he sat at the computer and wrote the kids an e-mail telling them. I had already been telling them for a year that he had it, but now we had confirmation. He might remember, he might forget, he might go into denial....none of that matters as long as you control the purse strings. Others have been bankrupted by their spice before finding out they were spending the money. Make certain you have your legal documents lined up including a Durable Power of Attorney with medical access and decision making capabilities, along with only allowing him to carry outdated credit cards (if he insists on carrying credit cards) and hiding the checkbook. Let him have a few dollars so that he can pay for small things, but not enough so that he could cause financial trouble. You will learn that fiblets save your sanity. It is okay to stop telling the whole truth to him. And it doesn't do any good to tell him he has memory problems or that he has VD - you know it and have to deal with it. Don't argue with him. It will end up just upsetting both of you - and you have to be the strong one now. If you smile, he will too.
My husband wanted a convertible. For months I was able to postpone it by saying "next weekend" or "not today" - that was one thing he DIDN'T forget! <grin> Finally, I took him to the dealership and thank goodness they had no new ones, but had one that had been a dealer car that was like brand new - and he test drove it and wanted it, and we bought it....he loved that car! He drove it until I was concerned about the safety of others, and then I drove him in it as long as he could get in and out of it. He's gone now - but I still have it. I drive it on pretty days when I can put the top down! <grin>
You must budget on what you can afford, and figure out how to please him enough to keep him happy without his hurting your savings, because there is going to be a lot of expenses ahead - with day care, sitters, etc. in the years to come. I don't know how old your daughter is, but if she is grown and not living with you, there is one set of suggestions; if she is a teenager, there is another. Children cause a lot of problems for the caregivers from the beginning until the end. We'll try to help you through it as best we can!
My husband told his golf buddy that he knew he had major memory problems in 2004. He realized it was alz when the Dr gave him Aricept the next year. I saw the first signs in 2000. He has never had any personality changes. He has always been sweet natured. Thank God for that.
My dh was aware of his dx and acknowledged that he was losing skills and abilities, at first. Later, he would diminish the actual real loss as "I'm not that bad." Being aware of what was happening to him caused deep depression and suicidal ideation. He was treated for depression, anxiety and agitation throughout his journey. Poor decisionmaking early on led to expensive mistakes (read: buying a car) and changes in many plans such as work, housing and travel. I wish flo39 that there were some easy answers to your questions. It is helpful if the DOCTOR and other professionals tell your husband in front of you that he will need to make certain changes because his decisionmaking will be affected by this dementia----in particular, continuing to drive, taking prescribed meds and many other choices your loved one will want to make. I felt so disloyal to my dh the first time I had to call a contractor/vendor and tell them my spouse has dementia and we would not be doing what had been planned or had to modify it. It got easier, because each time I had to inform someone, they understood, having had some experience over the years with clients or customers with dementia.
My DH was diagnosed with Mild Cognitive Impairment in July of 2010. He has slowly progressed and I believe would be diagnosed with Alzheimer’s if he were willing to go back for testing – which he refuses to do. He very rarely acknowledges he has any cognitive impairment and is defensive when his deficits can’t be hidden.
He was having problems handling finances – wrote checks from the wrong account, threw away bills without opening them, filed away the new credit card which led to the current one expiring and charges being denied, kept insisting 5 twenties and 1 ten = $150 dollars, could no longer understand yields vs. dividends, etc. The worst was when his brother tried to con him into buying a Florida beach property for him (the day after I explained DH’s condition to him) and he was going to do it!
I followed the good advice of the veterans on this board. I just matter-of-factly took control in the area of financial matters. I’m glad I did, too because I found some things that were amiss. Here are some steps I took that you may find helpful:
#1. I cancelled all but our VISA and Discover cards. I miss the store card discounts, but it’s just not worth it when DH was throwing the bills away and then they went unpaid.
#2. I set all bills up to be automatically paid – either via a credit card or direct withdrawal from checking.
#3. DH is not allowed to throw mail out. I try to make it to the mailbox before him, but even if he gets there first, he knows not to throw anything out before I have seen it.
#4. I told DH it was too dangerous to use his out-dated software which ran on an old Mac computer. I purchased Quicken and a small laptop and track all our finances on there. We charge all our expenses (get 1% cash back) and Quicken makes it very easy to download the transactions from bank accounts and credit cards, and places them into their categories almost completely automatically. I did not tell DH “I am taking this over.” – that would have been met with severe opposition. When he asks about using the new system I just say it is too different and would be too hard for him to learn. He still tracks things on his old MAC - no automatic interface – he types it all in! When I suggest it’s not necessary he says he’s going to keep doing it because makes him happy – whatever…. The important point is I now have 100% visibility over cash flow.
#5. After hoping the brother-in-law con would go away through “reasoning” with my DH, I realized it wouldn’t – they are persistent –and DH can’t reason, or forgets! I wrote an e-mail to brother-in-law and his wife making it crystal clear – WE were NOT looking for any investment opportunities, that they are NOT to discuss this one or any others with DH, and that their suggestions were causing DH a great deal of stress and I expected it to STOP. I also asked them not to discuss the e-mail with DH as that would also cause him stress. Of course they ignored that and ran right to him.
It is not always easy or pleasant – but you have to do whatever is necessary, to protect yourself and your finances. Make it crystal clear to everyone else – salespeople, relatives, etc. - they are going to have to go through YOU.
Interestingly, when we met with a financial advisor early this year, DH said, “Well, you decide what to do. I’m better at making money – you decide what to do with it.” If DH had uttered those words a few years ago, I would have fainted dead away.
Oh! One other thing – we agreed NO charitable donations until the end of the year, when we sit together and decide on donations. This new policy came about when I discovered DH had donated over and over again to the same charities without realizing it.
Everyone's problems are different - you just have to adopt new family "policies" as needed, and use whatever excuse you can to make it easier for DH to swallow.
I agree that the financial areas are the most important and need to be taken care of immediately because of how expensive the mistakes your spouse can make when they have money. Like hiding money and never remembering where they hid the money.
The other really important matter I think that a new caregiver needs to face is getting your spouse on the medications that are available to help control and keep the condition from progressing at a more rapid pace. Discussing this early on with my dh made him almost want to hurry to a doctor that could get him on these type of meds. I was very firm with him regarding this. I just said something like...OK.... don't go to the doctor and get these meds and that will mean I don't have to be a caregiver so long because I will have to place you in a nursing home. Sounds cruel..right?? I didn't think so, I thought it was like "tough love" with a child.
Also, I think for women it is more difficult to take control in the early stages then it is for the men caregivers. The men spouses with AZ don't want to be told they have to do this and that, but you have to be firm. Now he thinks nothing of me being in complete control and he just follows what I tell him to do or not to do and seems very happy this way. He just can't make a decision any more and he seems to know that.
He tells me almost every day..."I don't think I am really that bad, do you??" and I always reply...."Of course not, you could be a lot worse". And, little does he know he will get a lot worse.
My DH knew from the very beginning. In fact he was telling others that he had dementia but...understanding the dx and knowing he has it are very different things. As time goes on and he continues to progress I try to expain it to him, somethings he can get and some things he can't. That is the same way with me for that matter! Still, everytime I ask him if any of the things are going on bothers him he says no because he doesn't remember what he suppose to feel like. Must be nice to be sheltered from what is going on like that.
My husband did not dispute the diagnosis since there is a family history. At the time his dad was still alive into the late stages and his younger sister had been diagnosed 3 years earlier at age 55. After 3 years of holding steady he has lost some ground. I know in the next year, if not six months, things will be changing more.
My oldest sister had a stroke almost 2 years ago. Physically she is fine but she shows signs of VaD but she is in denial and so are her kids. Her daughter just thinks she needs to 'get a life' and she will come out of it. My sister's comments when she is confronted is: don't you remember mom when she was alive? Our mother had what I call senile dementia - she never got to where AD takes one. Until her body gave out she was still able to function. Eventually age and her body giving out took her. In time - would her mind have gone completely? We will never know. It did not with her mom.
The advice given here is excellent! I've taken many of the steps regarding financial issues mentioned here and once in place, it all works out well. I have to admit though that it can be tough thinking not only for myself but for my hubby. I've tried very hard to make everything as much of a "non-issue" as possible. I ended up getting a PO box for certain special types of mail -- IRS and state tax issues, my husband's disability check (his private insurance won't do direct deposit) and credit card advertising. I set up all bills to come to me through email and pay them online.
My husband also has never directly admitted to me that he has any memory problems and he never will. He's never been very forthcoming about his innermost thoughts or feelings even before AD. He's only openly admitted to one person, our daughter, that he was having difficulty finding his way back when driving.
I always wanted to give my husband due respect and kept hoping it was just depression for a long time. I still have days when I find the whole situation unbelievable. I think I always will.
Elaine K - my husband has never been one to share his innermost thoughts too. I can only guess what is going on by interpreting little signs from what I learn here. If I ask him how he feels, sees things, what it is like etc, he just answer 'I don't know' which means he doesn't want to put it into words. I guess you can say it is a guessing game and hope we are right. I did blame it on depression - his mom's death in 2001, his sister's diagnosis of AD in 2005, a traumatic abusive treatment at a park we worked at in Florida in 2006 and our beloved dogs death in 2007. In 2008 I could not deny any longer and demanded he go find out what was the problem.
It makes it a lonely road and maybe easier to detach when there has not been that innermost connection in your marriage, even after 40 years.
The bill paying take over was easy here. I just told DH that he always paid the bills and if he were on a trip I would need to know what was going to come in and what to do with it...He was glad to turn it over and at first would ask to see the check book or what came in..guess once he felt I had a grip on it he just let it go.
I also saw an elder care attorney to go over our trusts and get the m updated. It took some doing and they are finally done. I just have to fill out some little items kept here. like who gets what...
I have yet to get the letters off to the banks to let them know how the titles to things in the trust should read now...there always seems to be so much to do.
The biggest thing to get ironed out is the financial areas and learn early what sorts of financial support you might need or if you even qualify for it. Do as much as you can while your DH is still able to make some decisions or grasp what is being said.
My husband accepted the diagnosis of Lewy Body Dementia initially--he had to stress his difficulties in order to get disability retirement. Since then he has slipped more into denial, but one part of the role he is trying to hold onto is being noble, so of course he wants me to do the financial planning things that will be best for our kids (who are only 18 and 21).
DH accepted the ALZ DX initially and would tell people he had it and may not remember things. Talked about it a lot. Eight years into it, he has stopped mentioning it, is always asking what is wrong with him that he keeps forgetting things. So....I guess he has forgotten what's wrong with him. I rarely use the the word ALZ now, I just refer to his "problems" as 'part of the disease'. But he doesn't ask what disease!
My DH was told of his DX but then and now he thinks he is in perfect health..just can't get over that nothing is wrong with him..." I feel pretty good..never feel bad...I am in really good health" that is what he always says and I would rather he think he is feeling well than not since I don't know if he would ruminate about every little ache then. And he continues to be cheerful and his wit and humor comes out..guess that is because he does not realize what is the matter other than he seems to forget things but he always adds " but we all do"...
They say ignorance is bliss and I have to believe that. My dh was never told he had Alz. He knows he has a tough time coming up with the proper words and forgets but then he says, "I am 85 and can do anything I want so I can't complain." He never complains but I do.
DH has rarely admitted he has memory problems or dementia. When I told him he has a degenerative brain disease that he will be die from he then says "I have some memory problems". Finances were a problem in the beginning but I got control over most credit cards and bills after he spent alot of money on porn. I have access to his IRA but it proves difficult to actually take money out of for expenses (houshold and for his aide) since he closely monitors his statement. "NOTHING'S WRONG WITH ME" is the mantra most days.
My DH will not accept he has Dem, let alone Alz...which is worse? we just recieved a letter from the traffic dept, for him to have a OTherapy assestment driving test, he has three weeks to have it done, if he doesn't he will lose his license ...I don't know what's best let it slide or let hin have the test and perhaps be able to drive a bit longer. He is so friendly with everyone...no one believes he is as bad as he is at home. I'm hoping to buy a new car next week before we get assesed for getting on the list of a NH...the more you have the more you pay, our car is 16 years old. I thought while he's still driving he might accept a new car easier, and it won't be just MY car..
Despite the fact that Gord heard several doctors say that they felt he had Alzheimer's, he never acknowledged the diagnosis. It was like the elephant in the room. I never used that word in front of him either. If I mentioned that he had a problem with memory, he would give me this blistering look which said that I was the one with the problem. Only once did he say that he was not the man he used to be. I really miss him. I wish he hadn't gone.
Thanks so much to everyone for your input. I want to put in more later but it has been a long and tiring weekend. Just know I appreciate your taking time to read and answer - I am once again frustrated and worn out with daughter. This is not the forum for that. Thanks again.
I have tried to put myself in DH's place and how would I accept a dx of dementia. Probably not well. I expect I'd be sure it was a mistake. So I'm not surprised that dh doesn't admit he has problems. Others tell me they can't see any difference but of course they aren't with him 24/7 or they would. Again thanks for your input.
He knows he has Alzheimer's. He remembers the blunt delivery of the neurologist who gave us the Dx. He does NOT remember that we've since had extensive testing via clinical studies at NIH which determined his specific variant is posterior cortical atrophy.
Now, 5 years post-Dx, he still knows he has the Dx, but he does not believe there's anything wrong with him, or anything he cannot do. (despite the fact that he can, in fact, do very little.)
Just today he revived the notion that he should "do something to make money, maybe study accounting." Here's where I have to practice my therapeutic responses: Listen, acknowledge, talk ABOUT it, but distract from any actual plans to take action.
One of my hospice patients is doing better for reasons unknown. I can't help wondering if I am doing his wife a disservice when I mention how well he is doing. She surely knows how this will end. For the moment we are enjoying his lucidity and that's as good as it can be. Might as well live until you die.
My dh continues to talk about how he should never have retired and now he should look for another job. He is 78 and of course could not begin to do any sort of work. Our retirement years until about two years ago were just what we had hoped for. I just remind him that if he hadn't retired we couldn't have done all those things. But then the next day/minute he is again regretting retiring and talks about what a good job he left. That job was over long ago and the company is laying off folks now because of lack of work.
Flo: Just a suggestion, but when my dh starts on one of those "I should have, I could have, etc." it seems to get him off the subject if I agree with him instead of trying to explain why he can't. I just say something like "yea, you can go and do that tomorrow or yea, sounds like a good idea to me, etc., when do you want to try that, etc.
We all have to keep remembering there is no "reasoning" button left, so trying to explain why they can't do something usually does not work.