This is my first post on your message board. I am 63 years and married to George who is 68 and has AZ - he is a retired financial analyst. He was only diagnosed in May primarily because he has steadfastly refused to see a neurologist and says his only problem is remembering people's names. He is so far past that it's not funny.
Here's my dilemma - how do you deal with issues that arise when a major decision needs to be made in your home (buying a mattress) and your spouse has always been the head of the house as a finance person? I have always respected and appreciated his being involved in the decisions we make and his skill has helped us in retirement - but now he insists on deciding which mattress we buy but his attention span is so short and he says he doesn't like anything I have chosen. I spent a lot of time researching and checking out what would be a good choice and narrowed it down to 3 - took him today to look at them and he will only say that he doesn't like how they "look" and that he knows that I took him to a place two years ago to look at one and he liked it. I have no clue what he's talking about.
I have so much resentment over the fact that he can no longer see my needs and can't have any compassion for me - and yet as I write this I feel like I am coming across as selfish. No doubt you all feel the same way - you cook and clean and meet every whim they want, beg them to eat something, answer the same questions over and over and the one time you need something that will help you physically you just can't get it accomplished. You ask why don't I just go ahead and buy a mattress and bring it home - he would be so irate and angry I'm not sure how I would deal with him.
Welcome to my website. You have so much to learn about being an Alzheimer Spouse, and we will help you through the journey. First, let me say that as hard as it is, and believe me, I know how hard it is, YOU are going to have to change your attitude towards your husband. I fought against this tooth and nail. I screamed and cried, and yes, was full of resentment, but the sad fact is that you are going to be changing more and more from spouse to caregiver. You will not be able to ask for his help and advice. He will not be capable of fulfilling that role. I would buy the mattress myself. If he is prone to rages and tantrums, I would definitely consult with a neurologist who specializes in memory disorders and get him on calming meds.
You are not selfish, by the way. You're an Alzheimer Spouse Caregiver, which means you do it all, take it all, without any breaks or benefits.
One of the first things I ask new members to do is go to the home page - www.thealzheimerspouse.com - and look on the left side for all of the resources. Click on Newly Diagnosed/New Member to get you started, and then click on "Understanding the Dementia Experience" by Jennifer Ghent Fuller. It is the square that has the picture of the woman in the life jacket holding up the sign that says, "NEED HELP".
I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side.
If it appplies to you and your spouse - there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section also on the left side of the home page. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
George's Caregiver--Welcome to the website. I can relate to your post because my husband was a CPA. In our case, the sore spot was doing the taxes, and that was quite difficult around here. However, now you are the head of the household and the name of the game is filling that role without your husband realizing it.
Suppose you picked the mattress you want (without him there) and when it is delivered, told him that he picked it out and it's the one he liked 2 years ago? It seems clear that it is futile to involve him in decisions anymore, you won't get anywhere except frustrate yourself. We call this "therapeutic fibbing" and it's basically white lies to keep the peace.
Seven years ago, I could have written your third paragraph. What I came to learn is that this apparent lack of compassion on the person with dementia's part is due to a symptom called anosagnosia. Part of the disease is that some (or most) patients can't recognize what is happening to them because the part of the brain that causes self-awareness has already been damaged. Thus, if he doesn't know how impaired he is, he can't recognize how much you've taken on. Sadly, you are not dealing with the same person you've known all these years, the disease changes so much. But if you educate yourself on how to handle these things, the whole process can become easier to bear.
I really can't say it any better. It's time to simply start making the decisions yourself. Will it upset him if a mattress is delivered and he doesn't believe he played a part in choosing it? If so, maybe he could be having lunch with a friend or something when the mattress comes. I know that could be tricky to arrange, but you just have to take steps as they need to be taken and not ask him to participate in a way that he is no longer capable.
Well, to be realistic, you don't want to spend too much on a mattress and you should IMMEDIATELY cover it with a waterproof cover. You yourself may not sleep on it too many years. Other than that do what Marilyn and emily say.
I also have a husband who was a CPA and used to handling all the finances in the house. Since he is retired and I work full time - and I'm not a numbers person - I was more than happy to let him do all the bookkeeping.
When I realized he was having memory issues, I started looking over his shoulder. When he was hospitalized for atrial fibrillation in Jan. 2011, I took over the books. It was a struggle. He would argue, demand to see the checkbooks, etc. But little by little he gave in. It was a combination of things. He was hospitalized a total of 5 times last year for various reasons, plus spent almost 3 weeks in rehab for physical therapy, so that kept him busy. His neuro put him on Zoloft, so that mellowed him out. I convinced him I needed to do the books, as I wanted to learn how. Slowly he gave over the reins ... and now he never asks about finances or checkbooks. We haven't had any major purchases, but if I consider one, I will talk to him about it ... but make the decision myself. I would follow Marilynn's advice and tell him a "white lie" is I had to. Convince him that he already approved of the decision, that I didn't act on my own, but it was mutual.
I've done things like change our lawyer and our financial adviser. He's been good with that too. I've also changed a couple of his doctors, with no issues.
As far as the lack of compassion -- boy, do I feel it. There's no changing it, so I try to deal with it as best I can. But when he gets angry about something, and I think of all I do for him ... well, it hurts. Hard to have that lack of appreciation, you know?
welcome to the site. it is a wonderful place for knowledge. when i was doing remodeling last year bobby was still sleeping very late so i would have things brought in while he was still in the bed. the living room suite came in during that time when he woke up and was dressed to come out. i said surprise and happy birthday a new rocker for you!! it was the day before his bday so that worked out good. but somethings i have friends take him out and i have the work done or pieces brought in and in most cases now he does not notice. i would thing a mattress would be something easy to cover up but as mentioned do protect it a time will come with you least expect it and it could be too late. i was lucky and ours had a removal pillow top that was able to be washed!
I went through the same thing only with a riding mower. For years I begged for a riding mower but my DH said we were fine with the push mower. He can't mow anymore leaving the job to me. Mower broke and I couldn't fix it. The next day I had a riding mower delivered. I worried he would have a royal fit but he hardly acknowledged it. I say get your mattress but save the old one. You may need to take your mattress to another room one day.
George's caregiver----welcome to the world of AZ, where everyone here has given you great advice, and while you don't believe it now, you will (slowly) get used to taking over these things. Sad, but true. I totally agree with Mag's advice, and donna's comments reminded me of when I had to buy myself a new car. We were about two years into the disease, and I had told my husband about me needing a new car, which didn't get much of a reaction, and so when I finally brought it home, he was first excited, looked at it, etc. but then got very upset and said "How are you going to pay for it? You don't have any money, the money is all mine!" (which was a common theme at that time, even though by that time, I was paying all the bills, but telling him about it.) My reply was "Sweetie, you bought it for me for my birthday" (which was the following week). He thought about it, smiled, and said something like, "I did? I am such a good husband and you are so lucky" and that was the end of that.
Reminds me of last year, when I bought anniversary cards for DH and couldn't find them. I'd left them somewhere and he'd found them, signed them and gave them to me! He really believed he'd bought them!
Lack of judgement regarding finances in general was one of H's first symptoms but I didn't recognize that so early on. So we had some fights, but these were "normal people's" fights, long before any raging. Anyway, because I was always more into the computer I devised a long range plan to take things over by saying that it was "more economical" for finances to be done on the internet. I also would say that he was certainly too busy with important matters to bother with minor bills, etc.
With the mattress I would arrange to have it delivered, cover it and leave it at that. If questioned I would do much the same as some suggested above- "oh, I managed to find the same one as the one you liked."
I don't mean to sound flippant. None of this is the way I had hoped it would be and unfortunately it is now second nature. Sometimes I feel like such a fake but learned, mostly from here, that an argument with someone who has dementia can never be won. I very much miss being appreciated. I tell myself that it is not a matter of he "won't" but that he "can't". However, I have a "can't" too, and that is turning off my feelings 24/7.
Thanks everyone for your welcome and comments. I am thrilled to find this website and have already learned so much in two days! Have ready thru "The 36 Hour Day" and "The AZ Caregiver's Handbook". Both are good, but being the caregiver of your spouse is totally different. I look forward to keeping in touch and learning from all of you. By the way I printed out the article by Jennifer Ghent Fuller and took it to a friend tonight at church who is also dealing with her husband's AZ.