I haven’t been here for months. My husband was and is behaving so strangely, that at first I wondered if I belonged here. Sadly, the responses to my lament and description of my husband’s behavior confirmed that indeed I did belong here. But, summer came around and he wasn’t too bad and my daughter thought that he was/is exhibiting signs of “senior” ADD. I read about it and perhaps he is. But even my daughter saw him and his strange behaviors and questions if he has dementia of some sort. Tonight we were playing around with the cat. She lies on the mattress cover the instant I begin to make up the bed. My husband and I put the fitted sheet over her (she refused to move and I promise we weren’t hurting her). Then we put the flat sheet over the fitted one. Still no movement. Then the blanket over the sheets. She became squirmy so I said we should let her out. He pulled back the blanket and I said No. Then he pulled back the top sheet still spooking for the cat. I became exasperated and said pull up the fitted sheet! He looked puzzled and said, “the fitted one?” He couldn’t figure out in the normal time frame (1 second) how to get her out. He denied it was a big deal at all claiming it was a silly cat thing and I was totally overreacting. I know I wasn’t but sometimes he almost convinces me. I was taking pictures of it all to show our kids and even videoed when he was to pull up the fitted sheet so it was all “on tape.” I sent it to to of my kids and they both could see immediately what the problem with him was, so I don’t feel crazy. I know this is a trivial event but it seems as if his problem solving ability is terrible. Amazingly, he still substitute teaches at our local high school. He was a physics teacher until 2/12 years ago. He’s been going to a NP who specializes in anxiety depression and add. She’s prescribed prosac, which hasn’t done a thing, and Zanex which seems to help when he gets anxious. I feel like I need medications to deal with all this. He’s just not right and now at least two of my kids really believe me.i feel very alone. We had a great marriage and I don’t know what to do. I get so impatient with him (in spite of my vows to not be). He’s still very nice and sweet and I feel like a total bitch. He hasn’t gotten a lot worse since last spring but I can’t talk with him anymore and he never initiates a conversation or has ideas of where to go on a trip or anything. Is this slow slow progression typical? Should I join a support group? He stoutly denies that he’s any different except for his word retrieval problem which he says is normal for his age (70).
I laughed when you wrote about the cat. I have had cats that do that - refuse to move so I make the bed over them!
It could be dementia but only time will tell. The CT might show some brain shrinkage but an MRI would show more, PET scan is the best. But, when my husband had his at age 60 it just showed shrinkage normal for age. That was 3/2008 and he is still going, has progressed very slowly although this year has progressed more. I am not sure where you live, but to get the best diagnosis it has to be someone experienced with the disease. Best is if you have a place like Mayo Clinic where they have special dementia clinics. If you go looking for a neurologist make sure they are specialized in dementia because all neurologist are not.
I think maybe the hardest part for us is learning to accept the change in them, that they can't reason with us, can't understand things or takes a while, etc. I can't believe he is still teaching though. Learning to be patient with them especially when it was something they use to do all the time with no problems. Remember their brains process slower now so it can take time to figure it out if at all.
If you have a support group in your area, I would join them. If there are more than one you might try them all. Many cities now have 'Memory Cafes' that can meet weekly, bi-weekly or monthly. Here they meet for breakfast served by Meals on Wheels. The caregivers meet and talk while those with the memory problems meet together.
As for drugs, the AD drugs like aricept, Namenda, galantamine, exelon, etc., if they work which is about 30% of the time, they work by allowing the person to stay cognitive functioning longer while the disease continues destroying the brain. Eventually the disease wins. It does not slow the disease down which is often a lie doctors tell patients. More and more are choosing to not take them for that fact and side effects.
Your husband is still young. The 'normal' aging memory problems he is referring to is defined as you forget but remember later. With dementia you forget and never remember - or in the early and middle stage they might remember days or even weeks later but quickly forget.
I would make sure all your legal paperwork is in order including financial, DPOA, end of life wishes.
Hi Swampskater. I know exactly what you're going through, one day you're sure he's OK, the next you think maybe you're the one who's crazy. Your words are the same as I've spoken many times and I'm sure everyone here has gone through a similar time. I said today on my post that he looks and sounds so normal that people who just see and talk to him for a short time wouldn't believe me if I told them what goes on at home. Still have one son who refuses to believe there is anything wrong with him. My husband will tell people he has a little memory problem. I truly understand and there really isn't an answer. But this is one place where everyone can empathize with what YOU YOURSELF are going through. For years my husbands geriatric doctor kept saying it was just normal aging whenever I tried to talk to him. Had to get another doctor to really listen to me, then a neuropsychologist for diagnosis and help. You just have to hang in there and put one foot in front of the other day after day. There are people on this forum that have heard it all and know how to advise you as well as know many resources. For me, one of the first things that made me know it was more than just normal aging was his inability to process in his mind. Today still, if he gets nervous or confused his brain simply closes down and he can't think through what's going on. Charlotte has been through this for many years, I often wonder how she is still sane.
I managed due to a combo of the antidepressant and the ability I learned as a child to detach my emotions. It worked for the first 10 years then I started wearing down. When I first placed him Sept 2018 I was more than ready for the break. It was only 6 weeks when I pulled him out but it was enough for me to regroup until I placed him in Feb. But, as all here know there were so many problems -seemed like each visit there were fires to put out, always something not being done. I had him home 5 days between placements - by day 2 I was more than ready for him to be placed again.
Wow. I just wrote a long comment and I was notified that I hadn’t signed in. I had or how else could I have gotten here? I’ll try adding this to see if it works.
I can’t retype it all. But just lamenting (again) how lonely and sad this is and how long until he becomes really unable to take care of himself, drive etc. He doesn’t understand complicated concepts anymore and using the computer and iPhone is so difficult for him. How he subs in school is a mystery. I guess not much is required in that job. He had a brain MRI last week and will have his 2nd neuropsych in January. Maybe we’ll get some answers then. Mostly I’m afraid, lonely and worried about the future. We did our wills and I’m pretty protected but don’t know how I’d ever afford to put him somewhere he’d be treated well. He has given up his wood working (even though he says he hasn’t), he makes a lot of excuses as to why he doesn’t do things that are complicated and does so many inexplicable things. He said he was going to rake the leaves today and spent quite a bit of time cutting down plants that weren’t ready to be pruned. We’d agreed that he was going to rake out the beds out front. He covered the fishpond but it looks crazy with styrofoam and plywood and slate over the top. Sometimes I just don’t have the energy to argue or try to get him to change what he’s done. I fear for the future and how long will I have him even at this level. I don’t even know what to do to really help him. Is there really any useful help out there? I just want my husband back. Plus I hate HATE being responsible for virtually anything. He never worries about anything anymore. Lucky him (ha ha). Sorry to just complain again. I wish I knew what the future holds.
Technicalities of this website: You can get on this page without signing in, but you have to sign in in order to post. If you have posted something without signing in, you can sometimes retrieve it by hitting that little left hand arrow at the top of your page and then copy it. You can then paste it anew after you've signed in. Sounds like I've got experience, huh?
You said you have your wills. I want to suggest that you might see an elder law attorney anyway. You are right to fear that you may be unable to fund the cost of his care in the future. It is usually a good thing to get everything put in your name. This protects you from financial decisions he might make as he declines and after a five year look back would make him eligible for Mass Health. It is good to become knowledgeable about these things so you are not flying blind in an emergency situation. It can be much harder to redo finances if he becomes fully incapacitated.
One other thing I am aware of in Massachusetts is the PACE program. Most counties in Massachusetts are covered. It is a a federally funded. all inclusive care program for people who want their loved ones to remain at home for as long as possible. It sounds like your husband would not be eligible at the current time, but I enrolled both my mother (first) and then, several years later, my spouse. It was a program that worked for us.
This website has been a blessing to many many people through the years, a place to vent, a place to gain information, a place to feel supported. You may find it helpful to read through the message boards and resources available here. I know that through this page I never felt completely isolated.Everyone here understood. It played a large part in saving my sanity.
By the way, until a few months ago I lived an hour west of Boston. I am now located in Maryland near my son. My spouse died two years ago.
I agree with LindyLoo, wills are a small part of the legal stuff, an eldercare attorney can better prepare you for the future. Among the documents you need are:
- Power of Attorney (POA). This allows you to act as his agent as long as he is legally competent. He can withdraw POA at any time and can counter any decision you make. But it allows you to do a lot.
- DURABLE Power of Attorney (POA). This puts you in control when he is declared legally incompetent or incapacitated. Rules vary by state. The DPOA has no power until it is triggered, once triggered he cannot counter your decisions. However, while competent he can withdraw the DPOA.
The two above can be done without lawyers, there are forms you can download on the Internet. I recommend using a lawyer. It made a difference when dealing with one of my wife's retirement funds. If the POA or DPOA is challenged in court a lawyer is in much better position to defend it if they wrote it.
- Medical Power of Attorney (MPOA). Power to let you make medical decisions. The legal field has handed this over to the medical field, you can pick up forms at a hospital. I recommend getting Five Wishes if it is legal in your state because it covers MPOA and other medical legal stuff.
Review all life insurance, etc. Sometimes people find out that a divorced spouse is getting all of the benefits because it was never updated after remarriage. Not saying it is your case but it is good to review. Make sure secondary beneficiaries is accurate.
Consider Long Term Care insurance, you will not be able to get this after diagnosis. An eldercare attorney can guide you whether or not a LTC insurance company might refuse to pay since his current symptoms might be too severe.
You need to discuss with and eldercare attorney how to best protect your assets if he needs to go into a nursing home and go on Medicaid.
I have DPOA and it covers everything. The attorney included financial, medical, personal belongings, etc - about everything one needs covered. Because we did it early in the diagnosis it became active the day he signed but I never pushed it for years when he could no longer sign his name. Plus, it helps he never fought me on making decisions for him.
We all know that 'I am tired of being responsible for everything' feeling so vent away. For women we had to learn all the things our husband did which was hard if he was our Mr Fix-it. For men they had to learn the wife's job. It amazes me how many men will learn to do makeup and other things for their wife to keep her feeling good. My husband and I always worked in teamwork - I would do the yard work but he would clean up after me (weeds and such). We have lived in a motorhome since 2004 so I have had to learn all the outside and maintenance jobs he did. I get tired and have my bouts of crying over it although they are getting fewer. It is not has painful now that he is placed and not home. When he was home I would get angry cause he would just sit there while I did his jobs.
When my kids were young I was one whose thinking was "it was easier to do myself then clean up their messes'. I carried that along with my husband because it was less stressful and often cheaper to do it myself than let him. If I did let him I would do it with him but that often ended up with me being very frustrated and angry. Often in the frustration, like happened to me, we get so upset that we do things where we get injured and they could care less.
My husband grew up in Wilmington, born in Lowell so you must be near one of them. Last time we were back there was in 2010 for his dad's funeral who died of Alzheimer's Disease. That was hard enough on him so when his sister died 4 years later from AD I never considered going back (live in Washington state).
You were probably signed in otherwise the comment box would not have been available. When we take to long to post you will get a 'red' message after trying to post. Often you just have to hit the 'add your comments' again. If it is a long post, highlight and copy so if you do get signed out you still have the message to paste in the comment box.
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Oh boy Swampskater, I really had to laugh, just put my name up there and ditto the rest, LOL. I think you are going through that first stage of trying to accept the unacceptable. I'm not sure I'm through it yet. I think so then something happens and I want to scream and just climb in a hole. I say all the time, I want my husband back!! I tell him that. I hate being responsible for every single thing that has to be done, inside or out, regardless if I know how or not. My herbs I grow by the front door are there no longer. I told him, I showed him, I even put some rocks and pots around them.....but they all went to the weed pile. We took some pictures recently when my sister was here, then happened to come across some taken about a year ago. I look like I aged 10 years. Hard to believe, it's definitely hard on caregivers - I just didn't realize how hard till I did it a few years. I will add, when it's your spouse there are so many different things to consider than when it's a parent.
We saw an Elder Attorney not long ago to update our info and add in everything that needed to be added at this point in our life. We chose not to do a trust - handled things differently. She even put a few things in "just in case" like needing Medicaid at some point. It's all filed with the Dr and Hospital and a copy to those who need it. My husband is afraid I'll die first and leave him not knowing where things are or what to do, but even if it happens he isn't able to do it anyway. Computers? Phones? I do insist he always have his phone handy if I'm away - make sure it's turned on, ringer up high but he doesn't really know how to use it. Fortunately I do have a fairly close neighbor I can always call - and if we are together - her husband is younger and has medical training. That means I can get out occasionally - but just occasionally. This disease takes over your entire life.
I won't repeat the good info others have given you in regards to your End of Life papers....as they were referred to. We live in a rural area and got the full works for $800 plus filing fees for our RE, and a few other little extras. It's a woman owned firm and I believe that's all they do. They looked fairly young - but then everyone looks young to me :) Very diligent, asked questions, and tried to do the best job they could to cover all possibilities. The future? I don't even plan for it anymore, just try and get through each day. But - what really burns me is ....if you just meet him in the store, or stop by for a minute, he looks normal, sounds normal etc. He may not know who you are or what you're talking about but he sounds good. Which makes me wonder if people think I'm lying when I say he has problems. But what's hardest, is when he's cognizant of what he's lost. Those brief times just break my heart.
Going off topic for a brief commercial:) You know I love to go get mani/pedis, but that's become part of my past. Yet once I stopped I realized that I felt less.... what? put together? Like myself? Like a woman? Not really a wife but don't want to give up being a woman. My sister was here visiting and had such pretty nails - and she has never ever had her nails done. She was wearing Color Street Nails. Happens her granddaughter sells them. They are just layers of nail polish so easy to put on, just choose the one that fits, stick it on, and it lasts till you take it off. Avon came out with the same thing years ago but were terrible. These are really great. Not too expensive, you can order them from home, and keep your nails looking good. I wore a sample for a couple of weeks, washed my hair, did housework even repaired some grout in the shower and they still looked great. Just removed them because I had gotten my order of other colors. I ordered a special set for Thanksgiving - my birthday :) and then a set for Christmas. There are lots of youtube videos on how to wear them, and a ton of people selling them, but you can also just order them from the website. Nothing it it for me, but if you like the idea of pretty nails without having to go to a salon these work great and I got all my fingers plus toes from one set of 16, with a couple left over, even with a few mistakes. $13 and I was giving $40-$60 every three weeks depending on which salon I went to.
Just google Color Street Nails. I think most places will send you a free sample.