I am going to agree with Marilyn. You need respite and you need to learn not to feel guilty. You can also look for Jan's Story on CBS site, 60 Minutes did a story on it.
Thank you for your comments. I will look into locating a copy of "Jan's Story". It would have to be a very desperate situation for me to even think of moving her to a facility. The for better or worse vow rings in my mind anytime I feel sorry for myself so I am not sure how bad things would be for me to even think of such a thing. I don't mind the caregiving, I just feel frustrated at times. I have read several stories here and it is nice to know others have been through the same and are still sane.
Keep in mind that caregivers can develop serious health issues as a result of caregiving. I have known enough friends to end up in the hospital from the stress. Keep in mind what will happen to your wife if something happens to you.
mustang trainer - we have talked before here about our husband's loosing their ability to have sex years before any other symptoms. My husband developed ED at least 10 years before so sex and intimacy has not been in our marriage for years. Even though he is still high functioning, he has no idea about sexual intercourse anymore. It is a loss I accept.
You must remember that often it is better to place - they can get better care, you feel more love for them, and you still have the important job of being their advocate. it is not breaking our wedding vows to place them.
mustang trainerr--Our wedding vows promise our caring and providing, but they do not say we have to do it all hands on ourselves. To make an absurd example--if your DW were to fall and break her arm, would you treat it yourself? No. You'd call 911, get her to he hospital and have her treated , probably by an Orthopedic Dr. You wouylkd b tkng care of her, as her sadvocate. Some of are fortunate to have LOPswho are edsily cared for sand we can keep them home. Others hasve Spouses whose Dementia makes the eventually behave in detrimental ways--even to being a danger to themselves orothers. Someof usCaregivers have our own health issues, or lack sufficient support in our efforts and must enlidst support efforts--Day Care, Respite time-outs, or Placement, because we cannot do it all.
When we marry, we ech take on a share of the work to make the marriage work. We support each otherin doing thast. When ALZ comes to the table, we (the Cregiver) end up with all our own plate of the work, our LO 's plate, andALZ hands us as third plate--everything re;lated to our L's care--medical, legal, insuran ce,social etc. Someof those chores can be done by abyone, some only we can do. We need to be smat and ofgfg losad whatr we can;p get help in, etc. Getting help in will aclimate your DW to accepting help from someone besides you. That can be vital in an emergency. These diseases change all the rules. WE lose everything that is part of a loving relationship, but as long as we honor our promses realistically and see our LOs through with dignity and love; and we survive to live fully the rest of our days we will have thre only win availableto us now. We do our best and it id good enough.
Welcome mustang trainer. I hope you don't have to reach a desperate place, but many of us eventually do. I am 45 and I had to place my husband 3 years and 7 months ago. The transition was harder on me than him and in truth, though it was the hardest thing I have ever done, it was also the best thing I could have done for us as well. I see him nearly every single day and I still love him deeply. I am able to make his happiness my only priority, something I was not able to do while bogged down with 24/7 caregiving. Such a gift it is to be "only" his wife and best friend again. Desperate times lead to desperate measures, thankfully, they don't always turn out to be a bad thing.
Ahhhh the sex thing…….. Just recently I have been having very vivid dreams of days long gone. I am not yet sure if this is a blessing or brutal torture. Sure do miss “us”…….
Hi Mustang Trainer, I am 47 and my husband is 59 and was diagnosed 6 years ago. So I was about your age when he was diagnosed. So hard and so unfair to have to deal with at a young age. I have many male friends, but just don't have the strength or energy to develop a relationship beyond friendship. But if I wanted to, I would. I think you need to look out for yourself as long as you are honest with the other person about the situation. Jan's Story is a very good book to read...
The most dramatic distinction in DW is the difference between her "professional skills" which have completely disappeared, and her personal behavior, which is almost unchanged. Her best line was "i'm bad at math but good at sex, Does that make mean I'm now a blonde? Our doctors have told us to reinforce her "strong suits" in every possible way. She is almost a test case for cognitive reserve in at least some areas. Sex seems to be part of that. Her memory for special sexual times over the past 40 years is far better than her memory for almost anything else.
My problem is that I find it very difficult to shake my fear of the future. I can't seem to put it down and "enjoy the moment"
Your wife's situation sounds similar to where my husband was before and after dx. His deficiencies were noticed by friends during card games, as well as on the job (he was a CPA). I think this was because those activities involved executive function, which was clearly damaged early on. However, at that point, he was fine socially/sexually, etc.
I understand what you mean about fear of the future--but sadly, dementia marches on regardless if one is rich or poor, successful or not, brilliant or average in intelligence. As caregivers, we must find a way to accept the disease progression and soldier on. For me, it has always been better to be grateful for what is left of Steve, rather than to dwell on the huge losses. However, it takes time to come to that frame of mind, because it really is a type of grieving (it's called "anticipatory grief').
So yesterday we are at the doctor's. My wife is wearing nothing but the open in front paper gown, and cute necklace and earrings. I said "you look really beautiful" She said " I should send YOU for a Brain function check"
DW has described an occasional "hot flash" often, but not always connected with sex. She is 61. Is this a real thing or a memory thing or does it matter?
DW would actually be relieved if its "just an age thing"
many of us ladies here can attest to hot flashes during menopause years. they can be quite annoying and significantly diminish quality of life if they are persistent. if they continue enough for her to complain, you can speak with her ob-gyn and maybe he can rx her something to help. it has nothing to do with sex, its a nasty part of ageing for us women! divvi
Ah yes, the hot flash! in my 50's, I got them regularly. Now that I'm in my 60's, I find that I get them after i've eaten sugar or sometimes after I've had red wine. It's like my body has forgotten how to regulate its temperature. However, it only lasts for several minutes and I just take it in stride, cause I'm not about to give up on chocolate or wine. I've found that dressing in layers helps. You can always unzip a hoody or take off a sweater. Although sometimes you just have to stick your head out the door & let the cold air cool you down. luckily, we have plenty of that in MN lately!
I kept a small battery powered fan by my chair. And would turn it on for a few mins when I over heated. Take it to bed to, on the bed side table. Cotton is best for sleeping, keeps you cooler at night. Stay away from nylon and nylon blends. I still get hot flashes from time to time. Mine started when I was late 40s.
I will probably be on HRT forever. (no lectures please). And I still get them once in awhile. Remember many a night I would head to the kitchen and just rest my head in the freezer! But seriously hot flash like over heating is a side effect to some commonly prescribed drugs so check the side effects of whatever she is taking. I also steer clear of polyester and try to wear breathable natural fibers as much as possible.
Thank you everyone. I will put this in the category of normal aging, pull the nightgown off the ceiling fan, and get back to the Power of attorney issue ,
:-) Actually this is funny and almost on topic :-) I learned 38 years ago that DW Freezes in temperature that most people consider mild She would share a bed with me but not a blanket (We use the German Steppdeke or duvet At age 50 , with hot flashes, she demanded and got a remote control for the ceiling fan that resides on her side of the bed in a little pocket. She still has it and uses it.
Thought of this last night. Good for a quick cool down. Unopened can or bottle of cold soda/water to the back of the neck or lower back. Works fast. Or frozen bag of veggies, if really over heated.