Hello. For the first time in two years I’m weeping because I believe my formerly smart, funny, creative and insightful husband is showing more and more signs that he has some kind of dementia. He went through a battery of neurological tests last August and had “moderate memory loss.” His word retrieval has gotten worse and his ability to solve simple problems has become more and more noticeable. He says there is nothing wrong with him but every day there are more signs that he’s just not the same. Am I crazy or looking for problems? Sometimes I feel like he must know that there is something wrong but he never sees it. He just turned 70 last week. He is just as sweet and kind as ever, but he is very tentative about so many things. He was a high school physics teacher and retired 2 years ago. I think that was the beginning of his decline but I’m not sure. I need help in being patient with him. I keep trying to be understanding but often end up angry because of the things he forgets or can’t figure out. What is wrong with me?!
Unfortunately it sounds like you do belong here. Sorry. Not seeing they have a problem is common.
I would try to get more testing done. If you live near a major city where they have specialized memory clinics, then try to go. There are many other illnesses that have dementia as a symptom that is treatable that need to be ruled out. Has he had a CT, MRI or PET scan? If not try to get them.
In the meantime make sure all your financials and legal papers are in order - DPOA, trust to protect assets if you have them, etc. Meeting with an eldercare attorney is wise.
Feel free to share more or just vent. We all understand.
Welcome, Swampskater. I would just say ditto to everything Charlotte said. I went through that period with my husband, too--where he thought he was fine (well--he always thought he was fine)--and everybody else thought he was fine--but I knew he wasn't. It's a scary and frustrating period. There is nothing wrong with you.
It is very common for someone with dementia to insist that they don't have a problem. The part of the brain that would allow them to see there is a problem is often damaged. They don't see a problem. Thus we try to distract people with dementia or say "Yes, we have no bananas" rather than contradict them.
Does he have a diagnosis. You might want to see a dementia expert at a university hospital.
Forgive yourself when you aren't as patient as you'd like to be. It is so frustrating (and scary) when we realize that we cannot rely on the strengths that used to be there. You are not crazy and you are not looking for problems. You know him best, and if you think he is having difficulty, then he is. If you come to the point of filling out a questionaire, remember to answer as he is on his worst day, because there will be many days when he seems 'just fine'. Not knowing there is a problem is called anosognosia if you want to look up more about it. I'm so glad you said "some kind of dementia" because there are many types, not just what we know as Alzheimer's. Best wishes to you.
Thank you all for responding. It is already helpful to know that there is a place to talk and ask questions. Dennis, my husband, is such a lovely man. I simply cannot believe that this is happening to him (us). The ironic thing is that I’m a psychotherapist and am very used to hearing about everyone else’s problems and trying to help them. So, here I am, lost and sad and not being a very good wife to my poor Dennis. Thankfully, we have lots of children and most of them are quite helpful and sympathetic, although several of them live very far away (California, Singapore and Maine). We’re meeting for the second time with an estate attorney next month. Do I need to meet with an elder care attorney as well? I hesitate to talk about this with the estate attorney because he’ll be there as well. I will be back with more questions and sad stories (sorry). Thank God I found this site.
Our estate attorney had known us for 20 or more years, so when my husband was first diagnosed I contacted him. He suggested that we put everything in my name while my husband was still congnizant and could sign the papers. That is what we did, as well as sign POAs (I changed my POA to a child), and Medical POAs. The estate attorney handled everything. Eldercare attorneys are especially helpful in cases involving Medicaid and preserving assets. When my husband died, his estate was very neat and clean because all of the assets had been transferred except for IRA and RRA. Doing this was also helpful for me to manage the assets without having to provide a POA everytime I transacted something, especially property.
Hello Marche - my problem is that Dennis doesn’t believe he has any issue with dementia. I know he would object to doing that (putting everything in my name). He will be tested again in the summer and if (when) the examiner tells him that he’s lost more of his memory,etc, he might be receptive. We shall see. I am praying for patience.
We always managed our finances together. He gradually stepped away from things. He began have no trouble answering questions to confirm his identity when we’d call to take his Required Minimum Distributions. Swampskater, you’ll have to figure that out this year if he has IRAs. You said he just turned 70. You actually have til April 2020 to take his first distribution, but I recommend you get it done by December. If you wait til April, you will have to take his second distribution by Dec 2020, meaning you could end up with two distributions in that calendar year which could be disastrous tax wise.
But I digress.. Back to legal thoughts. So when he couldn’t identify himself or tell our address, Vanguard suggested making me his Agent. Then I could call and do his distributions for him. I really didn’t want to declare him incompetent. I mean what an irrevocable and awful thing to think about. For quite some time I was able to do things online logging on as him. Then he started having difficulty signing his name and he would jump up and answer the phone and not understand what they were talking about. Once I received a letter saying he’d pledged to contribute to some charity. So I decided I better get control of the accounts. At some point you need to make sure no one can convince your husband to call or go to the bank and give them control of your accounts. Also had to figure out who could step in if something happened to me.
Hopefully you’ve been managing the finances. If he’s been doing it, it can be hard to find a way to get involved. If that’s the case, get involved quickly.
Could you get him to sign a durable power of attorney--the one that says if he should become unable to handle his affairs, you would take over? You could tell him it is "just in case." And then, of course, you would be able to handle the finances, taking the DPOA with you to the bank or whatever. It is hard in the earlier stages, when the deficits aren't so obvious to outsiders--but you need to get started. And as others have said upthread--get a definitive diagnosis, so you know what you are dealing with, and also so attorneys, bankers, etc. will know you are not just trying to "grab" the assets and control.
Do meet with an eldercare attorney. They are the experts of Medicaid law (in case your husband eventually needs a nursing home) and are familiar with other issues involving dementia. Sometimes they provide special POAs that are 20 pages long to cover every possibility.
When you meet with your estate attorney next month, perhaps you can have a conversation about how arrange things so that EITHER of you could easily handle things if one of you were to become incapacitated for a period of time. You needn't describe what you are seeing with Dennis. It makes sense just for couples in general to have plans in hand. Your attorney may pick up on problems and be tactful enough to steer the conversation in ways helpful to you both.
You can always make the attorney aware beforehand making sure he doesn't mention it in the meeting. You definitely need the DPOAs done - doing it for both of you at the same time seems to make more sense to them. When we did ours, my husband was early on but the attorney worded it so that when he signed it, it became active. I never pushed it then letting him still sign and do what he could knowing at any time I could take over. As time went by he let me do more and more just signing his name until I took it all over.
As for retirement accounts, even social security, make sure you are aware what you will need when he is unable. There are some here who found out they don't accept DPOA but have their own paperwork that needs to be signed. I tried to change our address for SS, but for some reason I could not do it online so phoned. He was unable to answer their questions so had to go in person where he had to authorize me to be his 'representative payee'. With the bank, they needed their own paperwork done. In fact, my sister is my DPOA, so she had to fill out paperwork with the bank so if something happens to me she can access my checking/savings accounts.
Also, the attorney hopefully will suggest this, but make sure you have your own account. Some here have had no problems with joint accounts, others have. His SS goes into our joint account, mine goes into my own in a different bank.
Medical - his doctors (VA doctor) has the DPOA and POLST agreement scanned into his medical records as does the local civilian hospital where I had to take him one time last fall. Now if he has to they have the info plus know he is DNR.
We have no assets but you do including the retirement accounts. Hopefully your attorney will do a great job in protecting it all so as this disease progresses you won't be left destitute or in limbo when medical or financial issues arise.
Eventually you will have to deal with the driving issue (if he still drives). Plenty in here regarding that.
Watch your finances carefully. That is one area they loose the ability to realize what they are doing. More than one couple has been left deep in debt due to their dementia spouse spending and charging. I always controlled the money so it was no problem for us - he never wanted to deal with it.
Where he was a physics teacher he is intelligent so can probably hide his problems from those outside but not from you. It eventually becomes hard for them to 'act' normal in the outside world.
I got a card from the Office on Aging (took a caregiving class there) the asks for patience for the person you are with due to dementia. But I hardly ever had to use it. Like Elizabeth said, a surprising number of people are tactful enough to realize what’s happening. I was always amazed how often men in hardware stores and workmen hired to help at home were able to answer our questions and make him feel like he was still involved and didn’t make him feel stupid.
That reminds me about the Office on Aging. It could be called something different in your county. You don’t have to be poor to get help there. It is very worthwhile contacting them.
Thank you all for your detailed and kind responses. We’re meeting with the estate attorney in two weeks and I will ask her about the DPOA. Life goes on and I have made a vow to be patient and kind. Because he always has been ADD I’m used to his forgetfulness and lack of organization. The biggest problem he has now is his executive functioning and not being able to figure things out. His inability to use his cell phone has driven me crazy but being patient with him has helped. Going away to a new place is hard. He is worse wherever we go. Can’t find his stuff, gets lost super easily. I have started to drive almost everywhere because of his scary driving and confusion about directions. It’s pretty tiring but the alternative is not good. I thInk the saddest part of this is the loneliness. I’ve taken to looking at old photos and remembering what he was like not that long ago. About 7 years ago he suffered from a pulmonary embolism and had another attack a couple of years later. I wonder if that was the beginning. I’ve read about vascular dementia and wonder if this is the kind that he’s beginning to show signs of. I suppose it doesn’t matter what kind it is. They’re all awful.
You are right in that it sounds like vascular dementia. It can take a different route but the end is the same. My sister had it after a stroke. Her first symptom was from a sweet person to an angry, nasty person.
Routine is very important to them. Changes are hard on them. Keep in mind, especially in public, the can exhaust themselves trying to act 'normal'. I know about the driving. I got tired of driving him around. It doesn't seem to bother me when it is just me, but when he is in the car, even after all these years - he should be driving. He stopped 6 years ago thankfully without a fight.
Routine! I switched the heater to cool when it got hot and he is still baffled by it....asked if I had the defroster on :) He is cold all the time now - opposite of what he always was. Argues about it all the time.
Hi Swampskater, love that name :) When I encounter a new problem with my husband I often look back over old posts to see whats been posted. Came across the one from you in May, which I believe was your first one, although it sounds like you had already been dealing with it for awhile. So maybe around two years now? You sound like a very organized person, and have taken the obvious steps in protecting your assets, as well as doing what's necessary to care for your husband.
I can tell you my experience....my husband will one day say he's lost his mind, and the next get furious if you mention it. But it isn't a straight line disease - no matter what the final diagnosis. You have read here it's like a roller coaster which is a very apt description. We will go along for a month or two and he seems so good that even I begin to believe maybe it's not so bad. Then one day we wake up and he's a different person. Every day he is worse, losing more and more abilities...this might continue for a couple weeks or more. But when he comes to a certain point, he seems to stabilize for awhile. One thing I learned the hard way is to be very observant of your husbands urine. A strong odor may be indicative of a bladder infection, very common with dementia patients, and will always cause more noticeable problems. The nurse told me in the nursing homes if a patient begins to show more symptoms the first thing they do is check for bladder infection.
We are about 10 years along the road of someone other than me, being able to tell something is wrong. After the fact, doesn't it always happen that way? We now know there were signs for maybe 20 years that had just been attributed to age. It sneaks up on you. Like yours, my husband was a brilliant, successful man - which makes it harder for me - to know how far he's come and breaks my heart in the times he is cognitive of his condition. When he was testing with the neuropsychologist we were told highly intelligent people scored high on certain tests and low on others - I've no idea of how that helps them diagnose but maybe gives them insight into which areas of the brain are damaged.
I recognize in your voice the panic you must sometimes feel - knowing it's happening and yet finding it impossible to accept. I'm not a joiner, and there are no support groups close to us, so this forum has been a sounding board for me when I could no longer handle what was happening, on my own. I had to get out my frustration with dealing with an impossible situation - and not having a single person who could understand. I learned trying to deal with it all myself, keep it inside, was only hurting me.
Others here have more experience and know more about the legal aspects and are always willing to share. For myself, I have finally accepted this is my life, and it's not going to get better. My husband is 82, and the men in his family live long lives, in fact he may outlive me. This isn't what we planned, and definitely not what I want - but it's the life I've got. I find prayer and studying the Bible help calm my thoughts, we no longer attend church and I don't mean any formal worship - just praying my fears and asking for peace. My other coping mechanism is taking care of myself. I was a professional woman, and raised a family, so always dressed nice, kept my hair stylish and my nails manicured. As we got deeper into AZ I found I was letting myself go, who cared if I gained a few lbs, or let my hair get out of shape. I didn't see anyone anyway. We live in the country so I don't see people on a daily basis - so I just concentrated on taking care of my husband. I can't give you a specific date or happening that changed my thoughts, just that one day I looked at myself - and it wasn't me any longer. I can't change what's happening to dh, but I do have the ability to change myself - but it's not change - it's more of finding myself again. Coming out of the fog and really thinking of myself first for a change. Maybe it's vanity - nothing is going to change my age, I still can't really believe the old woman in the mirror is me :) But, it works for us. Dh was always very proud of me, and when I look nice he often comments on it. When I found a way to keep my nails done without having to go to a salon, I loved it. It makes me feel good, and when I feel good about myself, I find I have more patience with my husband. Maybe it a way of controlling a piece of my life that is essentially out of control. I hate this disease! I hate having to be the one who has to do all the driving! I hate being 110% responsible for everything that gets done, from our finances, the house, the farm etc. I often cry in the shower, I don't want this life! I want my husband back!! We said in good times and bad, in sickness and in health, in laughter and in tears. We've had more good times than bad and lots of laughter and love. I find looking at old pictures helps me, even though he has no memory of the trips, the vacations, even our marriage. He asked me this morning if he had a best man at our wedding - he was watching an old movie :) This may be just another long rant, I could write pages of all the things he does or says and our day to day life. I did recognize in you some of the things I went through earlier....hoping for answers when there are none...so thought I would share how I've found something that makes my life easier. It isn't going to change - but I feel I can handle it better. Best of luck to you!