On these boards we often tell each other: "This too will pass" and it is really true. Although old behaviors are replaced by new ones which are not always an improvement. But for those in the early stages it may be an encouragement to hear that some things really do seem to get better. Part of this comes with acceptance and better coping skills on the part of the caregiver and perhaps (in my experience) some general mellowing of the the LO (although perhpas it's just improved medication).
- After a year of tiresome difficulty trying to get dh to shower or bathe, we have settled into an enjoyable routine of a bath (together) every second night. He even suggests it himself sometimes (not even always on scheduled bath nights). He will even allow his hair to be washed since I promise him to blow it dry afterwards.
- After a period in which he became increasingly shabby because he would refuse to shave or only do it very badly, he has now settled in with the new electric shaver that I bought him and is looking good again. I should have bought it a long time ago (but he has always hated electic shavers and might have refused earlier).
- The driving issue seems to have resolved itself since "his" car has "lost" keys and has a depleted battery that I have deliberately done nothing about. He asks me to drive him places and will cheerfully (well, usually) get into my car anytime I want to go somewhere.
- He no longer worries or complains about how much things cost, having lost all concept of prices and money.
- He is very accepting of anything I cook, but would be quite content to eat pizza or fried eggs continually -- or to exist on apple crisp and bananas.
- He used to insist that I do things his way: for instance, he didn't want me to throw coffee filters into the compost and would object if something in the kitchen wasn't clean. Stuff like this doesn't bother him anymore.
Such a great picture Jeanette, we don't have any of those issues yet, but I am learning so much from all of you. I wonder how long before I am dealing with these these new behaviours. Hope it a long time. At any rate I think I'll be able to cope because of all the good advice from so many here on this forum. The caregivers role has so many rules but important rules that has to make life easier. I can't imagine what I would be thinking if I hadn't read all of these posts. Joan again, thank you for starting this. I'm worried about the day that my Dh can't drive anymore, can't even imagine.
I understand, Jeanette. I'm feeling quite comfortable (falsely?!!) leaving L. in the care of Jeannette and Andrew because L. really won't understand that I've gone. He was used to me "going on trips" in the past, which he remembers, and is totally uninterested in why. Today, in the afternoon, he forgot we'd had sushi for lunch. He is almost totally passive and happy.
Forgot one of the most important things: He used to get up EARLY every morning, roaring to get on his bike and go, angry and glaring at me if I wanted to stay in bed till 7. Now, he's almost always content to stay in bed till around 8:30. I have to get HIM up on days when we have commitments.
My experience is much the same as Jeanettes. Here in the middle stages it is a lot easier, in our experience as well. We have a little dog that we co-own with a daughter, the dog is sick and the daughter is going to take him home with her. Wife takes care and fusses with and about the dog. Without him, it is liable to be about me! dave
i have to say having DH in fulltime depends now has become MUCH easier . the repercussions of having no idea where or how a bathroom works was so devastating for such a long time. i was constantly cleaning and scouring. now that he rarely is having mobility issues, i have to admit the trauma of those past times has faded. if its of any consequence there is a good thing to having them in diapers! you change them and then its done. no messing floors, bathrooms, beds, or no 'fly' zones! so yes as they progress into latter stages it becomes alot easier compared to alot of early-mid stage antics. divvi
Jeanette-- Good thread! My experience has mirrored yours. Early stage was awful. Not only was I trying to cope with personality change, taking over the finances and other major areas, stopping him from driving, but there was also playing catch-up with all the home repairs that he had let slide. In addition, there were the daily crises--things missing, broken, general chaos. I was always waiting for the other shoe to drop. Once my husband entered the middle stage, it is a much better, calmer life. He is more sweet tempered as in the past; I feel confident in my role, as George Bush would say, as "the decider" on everything; he has stopped breaking and misplacing things; life is just more normal. I know, more or less, what each day will bring. So even though I'm much more hands-on, helping him with the activities of daily living, the constant tension is gone. And we both have accepted the diagnosis, and that makes a tremendous difference.
Thank you, Marilynn, I agree that what makes it so difficult at first is the unexpectedness of everything, and as you say, the catching up. Dh had not filed income tax returns for three years, before I woke up and saw what was going on!
Now there is more acceptance by both of us, he seems to have settled more comfortably into his new role and it is easier to establish routines that work. Friends, family and neighbors know what is going on and are supportive, each in his own way, some of course much more helpful than others. I don't bother him more than absolutely necessary with Dr's appointments etc.
Just now we were sitting at the kitchen table and I had just taken our little sugar-free apple crisp ( his favorite, and he helps by peeling the apple and cutting it into pieces ) out of the crisper oven, and had served us each one-fourth, as always. I was reading the paper and looking forward to my second piece, when I looked up and saw that he had finished the whole dish. Very calmly, not a thought in his head that half of it was for me. Six months ago I would have caused a ruckus, but now I quickly adjusted and didn't say a word -- it's done, I don't need the extra calories, he feels good. Lesson: put the rest out of sight, or dish it all up at once. Every day a new lesson but things like this don't bother me anymore.
MarylyninMD, your early stages of this disease is what I am facing now. You mentioned all the little things that need a fix like painting the door or fixing a little crack in a step..things he used to take on and will focus on but do nothing about. Add to this the medication issues of taking insulin. He also likes to sleep until sometime past 8 . I am not sure what stage this really is but it is the time for frustrations and confusion for caregivers. Right now I am having to figure out the tax situation, the trust issues to make sure we are ok money wise and that I won't end up in the poor house or under a bridge dining on road kill. There is so much I tell others including his doctors that my brain housing group is full to overflowing..so much to remember to do all alone.
jeanette good for you for making the apple crisp episode a learning curve instead of the rukus:) out of sight is a good plan. this is what it takes to survive all that comes our way. divvi
Ladies, I wish that I had not been in such a state of denial when Sharon began to fade. The earliest behavior that broke my heart and strained my patience was her packing random articles of clothing into a canvas bag and demanding to be taken home every single day when I walked through the door at 5 PM. I would go through the ritual of putting everything back where it belonged every day. What I should have done was leave the darned thing packed... it wouldn't have stopped the behavior but it would have saved me a chore every day.
Jeanette...sounds like our husbands are twins! He peels the apples for apple pie..and is currently on a tomato kick will drink all tomato juice in sight, and taco sauce! Never thought I would be hiding the tomato juice instead of the vodka. I enjoy this stage of his journey and my stage of acceptance. He is in a happy place and seems to enjoy his life from his perspective. What more can we ask for....I am going to enjoy it as long as I can, every day a gift!
As for me...no longer chasing "cures"...will not put him through any more exhausting, and frustrating tests. I make sure that his hygiene, nutrition and stimulation address where he is right now. Will treat symptoms as they occur.
He is still the most handsome man I ever met. Even if he does not always remember my name and that we will have been married for 49 years in October.
Mimi--let me give you some advice about the early stage. In retrospect, I should have considered taking an anti anxiety medication myself. I don't like taking meds and didn't want to start one when I anticipated that my caregiving role will last for many years (my husband was dx at age 60). I thought I'd hold off and use something later on, when he was more advanced. Now that he has reached the middle stage, I see that perhaps if I had done that for the first 3 years, it would have been easier on me. I could have discontinued it when things improved. You may already be taking something, as many here have said they are. I wish I had pursued it, as I really struggled on my own.
It's good to know some things get easier and scs, your statement about no longer "chasing cures" hits home. Thinking that there just must be something that will stop this progression, I've tried everything that has been mentioned. I'm trying now to adjust to the fact that nothing...no pill, no oil, not anything can stop this decline, and we must enjoy what we still have now. I can't imagine a decline being easier but acceptance must be the key.
Dazed-my daughter just sent me this -I have already shared it with good friends and now would like to share it with you: There are moments when gratitude overtakes you . . completely by surprise . . and you realize, just how lucky you really are and how ridiculous you are for forgetting that even for a brief moment. Life is too short to dwell on what I don't have and I am too blessed to not be grateful for all I do have. Praying the same for you!
Thanks,MarilyninMD, for your insight and concern. I will take that under advisement. One of my biggest problems is that it is hard to get a good night sleep. I get up early..as soon as it is light....but it is the dreams all night..I can't recall them in detail but they all have to do with solving some kind of crisis. So I wake up tired some days. The last 3 days were pretty good...today was a little harder since I was tired after trying go clear up after overnight guests had departed. I was having to repeat things more today than yesterday..but it ended on a good note as Hubby took me to a belated valentine's day dinner since we decided to avoid the crowds yesterday. That was nice ; ).
Since the house guest issue, i KNOW I need to be more assertive in saying Not now...not a good time to visit..or fine, come visit we will go out to dinner but stay elsewhere if you would..I think this might make a good discussion for those of us who are just starting this journey..there is so much to learn.
Mimi, I was reassured to read that I'm not the only one having dreams that seem to be solving some kind of crisis. And yes, you wake up tired. At least we're in the same boat, and it doesn't feel so lonely.
Glad to hear that there's hope my hubby might eventually start sleeping in one day! He gets up early every day and if some activity or appointment is scheduled before 10 am, then he gets up even earlier than normal. It's on those mornings that he tends to sleep restlessly the hour or two before finally getting up. I never thought I'd want separate beds, but when my sleep is disturbed by his tossing and turning (fueled by anxiety??), the idea of separate beds does cross my mind!
Your description of the apple crisp disappearance was very nicely described. My dh loves anything sweet (always has) but lately he's sometimes been forgetting that there's a container of cookies or squares in the cupboard. Another indication that his remembering system isn't what it used to be . . .
I forgot to say above: Recently, I spoke to an early stage support group on this exact topic. It went over well. Any of you who are attending support groups may want to suggest that you do the same if there are also early stage groups in your area. Why not give people hope that the misery of the early stage may actually get better?
I don't use a recipe, just peel an apple or two in a glass dish (usually two apples of which about one half gets eaten by dh during the peeling and cutting process). While dh is doing that I stir up the crumble consisting of oatmeal or muesli, flour, sugar-subsitute (most people use sugar but dh is diabetic), grated coconut if I have it, cinnamon. I pour some melted coconut oil over this mixture and mix with a spoon until it forms a lumpy crumble to pour over the apple. I have a wonderful crisper function in my microwave which toasts this little treat crisp in 10 minutes flat. DH sits at the kitchen table waiting for it to get done and we eat it immediately. I started doing this as a way to use the coconut oil although I have never been able to see that it helped dh at all. But we like it and have got used to using it. And I still have some but will probably go back to using other oils when it is gone.
I also began to realize that some things got easier as my husband got sicker. I didn't need to have the daily fight over what I was making for lunch and supper. I just made what I planed to make. Then we started going out for our big meal at lunchtime every day. At first I'd suggest one or two things to him. Now, I just order what I think he will like. Most of the time he does like it.
It no longer matters how he wants the house cleaned. I've hired someone to do it once every two weeks because I no longer can. After years of having a cleaning crew come into the house every two or three weeks, HE decided that post retirement that we wouldn't to that anymore. These days if something needs to be cleaned or fixed, I can just get it cleaned or fixed without a fight. That is easier.
As far as other symptoms as he gets sicker, it will begin with things being harder, but after a while, it will get easier again. I'm sure he will fight the diapers in the beginning as divvi's husband did, but after a while he won't. And so it goes.
In my case some things are easier, however, the agitation & combativeness are worse. If he never needed a shower, clothing change, pull up changed, shower or brush his teeth, he would be a lamb, instead of the devil with the strength of 2 men.
bluedaze, I just read your gratitude quote. It's so true. DH and I talk about how thankful we are for what we still have and I sometimes really am overcome with gratitude. If you can have that attitude with the circumstances you're in right now, surely I can too. Thanks for sharing.
On the gratitude--we saw a play on Saturday about a man held hostage and Beruit and what he, and his wife in D. C., were going through. It occurred to me this morning that although perhaps she was more fortunate than I was in the beginning (there was hope he would not be killed and would be released), as the play progressed, every day was torture for her as well as him. Not knowing what was happening to him, but knowing that he was suffering. At least (on the outside) it looks as if my husband isn't suffering, isn't in pain, and that is a huge consolation.
I have really enjoyed this thread today. The last time I wrote my DH was raging out of control. He is now on Trileptal 300 mg twice daily and it is like day and night difference. I think we are a good example of the beginning stages where there is personality change, anger, rage and you name it ~ we have been through it. I'm wondering what the "middle stage" will be like.
We don't have bathroom issues yet. Just the confusion and 20 questions all the time. I have to remind him that he needs a shower and to brush his teeth. He doesn't like that. He will be taking a behind the wheel driving test next week, and if he passes, his neurologist will have to sign off every 6 months. I like having that security.
Thanks for all your encouraging words. So much information here to glean from!
Loretta, I find it interesting that your DH was put on Trileptal. Don't believe I've heard of any other dementia patients using that drug. My DH has taken it for many years to treat trigeminal neuralgia. His neuro has him on Zyprexa and Lexapro for the dementia, in addition to Namenda.
Early before his dementia diagnoses, my husband was prescribed Trileptal for his Absence Seizures...it didn't help. I too have never heard of it for dementia, however, if it works great.
I so agree with everything that has been stated in this thread. It occured to me that as our LOs lose something (cognition, function, ability) we gain something. (less stress, work, worry) Such a cruel disease. cs
You're so right, cs. DH is diabetic and used to raid the refrigerator mercilessly, but I can now hide something from him by simply putting it behind something he never uses, like a big ketchup bottle. Sad, but it does make life easier. He used to stuff himself in the evenings and drink too much wine but now he never thinks of eating or drinking after supper, and I wait to have my wine till after he's gone to bed. So life is easier -- small comfort.