Every Sunday, my son Nick and his wife and 5 kids (2, 4, 6, 7, and 9- 2 adopted) come with their 12-passenger van and load us up and go to church. Nick has to pick Lloyd up and put him in the van. Then after church, we always go to Nick's to eat and the kids fight over who sits by Momo. After church, this week, the preacher's wife said she appreciated how I took care of Lloyd and how she knew it was a strain. I really had to think about it before I answered "No, not really". I told her I do it because I love him so it's not really a strain - tiring, yes...sad, yes...not a strain. I always tell his parents if I could have my pick of any of their 4 boys, I would still pick Lloyd - Alz and all. One drinks too much, one is self-absorbed, and one has to be in total control. I still have the best one.
What you just wrote has so much meaning. Sometimes I think how difficult this job is and how for those that have had a bad marriage it must be a "strain" to have to be a caregiver and for those that have spouses that are uncooperative with the care that is needed, that too must be a "strain".
My dh is is so cooperative and grateful for everything I do and I know that makes this journey so much easier. Regardless of what I tell him that he has to do to make my job easier that is one thing he does seem to understand and cooperates without questioning me at all. He knows he needs me. I find when he isn't feeling well and I just get a wet wash cloth and wipe his face or some other small thing that can give him a small amount of comfort it brings a smile to his face.
Thanks, Vickie! JudithKB, I have thought more than once about others who may have marriages that are not the best. I don't know what I'd do in that situation. It sure would be hell! (or abandon ship!)
High Five! Well said. Research has shown that spouses who "have to take care" of AD spouse are a great risk of depression and other medical problems if their relationship was poor to begin with. Duh! We knew that. Cannot imagine how hard it must be if for example husband/wife was a substance abuser or violent. Abandon ship before homocide thoughts set in...agree!
I feel the same way about my DH, would not change a thing. Hate this disease but not him.
I was just reflecting on this yesterday. My now becoming very estranged best friend, is married to one of the most woman hating grumping judgmental people I have ever known. (yes I know I know, forgive, oh yes he had a bad past, blah blah blah. I do forgive him, like him, no)
I was thinking on how I would so much rather have my guy, than live with that man for one day. I know it is a weird "silver lining"
Nice thread Linda Mc. How I wish, that the silver linings could make this journey 100% tolerable, that I was not so selfish and self centered, and could be happy every day.
JudithKB I use a warm cloth on Dado's face every morning too, and he is such an accepter like your dh.
They are trimming big trees out there today, I saved some money to get this done, a job we used to do. It is a lovely sunny day.
tiring yes sad yes but not a strain. exactly my sentiments as well lindamc. i also wouldnt know how to handle caring for a spouse which was abusive or mean during the good years and then needed to have a constant caregiver. the enormity of that stress leaves me profound, my respect to those of you caring for someone from not so good marriages. you are indeed the martyrs here. divvi
He would take care of me except I know be much more patient. He is now in the sundowning I guess, but it is lasting all day. It is the hardest job I've ever tried to do. Our teenage marriage has been all I ever could have imagined it to be in my dreams. I'm just so sorry he has to end his life like this. He is a good kind man that is turning into someone even he wouldn't like.
For years we had a bad marriage. Now I know it was the AZ taking hold of him. It has taken me a good year to get past that anger. I now have a new outlook on things and I to feel tired and sad. But not a strain. The world outside of his world may be a strain, but not DH. My deep love for him has returned. And for that I am very thankful. When all this is said and done. I will again have his love in my heart.
On a side note, the other day I bought the wrong item for DH. It is what I always got but this time it was wrong. Needless to say I was upset. After a while, DH came to me with 5 dollars. It was to buy the other item he wanted. He tries so hard not to be a burden. I just told him not to worry, I would get it taken care of. How sweet.
My DH also tries so hard not to be a burden and he's so appreciative of everything I do for him. I love him so much and this disease just hurts and hurts and hurts.
Believe it or not, I can always think of someone who has it worse than me. What a sicko comfort that is. Coco, I think that even in our darkest times, a little sunshine will make its way through to make things more tolerable. I'm sending you all {{{hugs}}} and sunshine!
Unthinking people would often ask me, "Does your husband even know who you are?" My stock reply was always the same, I'd say, "I'm not sure, but I DO know that he knows I'm someone who loves him unconditionally".
That reply would cause many to apologize for asking such an insensitive question. Love really got us through the worst part. (For me!)
My marriage was an abusive one from the beginning. Most of the almost 24 years of being married to this man have been terrible. Yet, since I've had him put on Seroquel (now he's on 3 different pills because Seroquel outlived its usefulness), he's been the man he should have been towards me during this whole marriage. I am so thankful to have had these "good" 2-3 years, in spite of the FTD that I'm dealing with now. Perhaps he's had FTD the whole 24 years. Who knows. He was dxed with MCI in the past year, but I feel he definitely has FTD. He fits all of the criteria. He just wasn't dxed right. The doctors didn't look at his behaviors at all, and he aced most of the mental exams they gave him. Hence the MCI. But, the orneriness and meanness he's used on me since I've known him tell me either he's just plain mean, or it's FTD. I even had to call the cops on him a year ago when the Seroquel stopped working and he threatened to shoot me and the cops.
You need to have a neurologist who is a FTD expert see him. Otherwise you can't expect a FTD dx because most neurologists and psychologists are not familiar with it.
Has he had a complete neuropsych test? Those take 8 hours to complete and can reveal a lot. There are tests for various aspects of FTD but they might be experimental and in limited use.
I think doctors also like using MCI until they see that the condition is getting worse over time, and then they will switch to some form of dementia. I think 20% of MCI cases turn out not to be dementia.
Different doctos do it differently and neurologists do not have a reputation of being people people. Our neurologist used to be a speech pathologist and that makes a (positive) difference.
Yes, he had the 8 hour neuropsyche test. That Dr came up with MCI. He did comment on the bad treatment dh has given me, in his report. The Dr was appalled, yet he still dxed MCI and not ftd. I was very surprised and hugely disappointed. However, dh has a 6 month followup appt with his other Dr in that loop, the neurologist, soon. I would not be surprised to see this neuro change his dx based on his decline in the past 6 months.
Here is one definition of "strain" from the American Heritage Dictionary: "A great or excessive pressure, demand, or stress on one's body, mind, or resources: the strain of managing both a family and a career."
Physically, DH has deteriorated since we were married 13 years ago. Cane, walker, scooter, wheelchair. Mentally, the deterioration has been more recent -- but looking back, I can see the signs from a couple years ago.
The stress on my body is evident. I developed palpitations, for one thing. I am constantly helping lift him into bed, or pulling him up ... just spent 45 minute in the bathroom because he was trying to transfer to toilet back to wheelchair.
Stress on the mind? I have terrible anxiety attacks, mostly at night. I also get depressed a lot. I have to face the fact that I'm a hot mess most of the time.
I don't see "strain" as having a negative connotation. I just don't. It's basically excessive stress ... and I would say that having a spouse who is demanding, who is unwell physically and mentally ... and having to juggle all of that with a 40-hour work week ... is excessive stress.
well said ms. magic. You know, sometimes when I find myself coming on here and feeling sad, or negative, I see others who seem to handle it "better" for whatever reason. I wonder, is it me? Am I weak, or just a whiner?
And I know generally I am not. You said it all. I have been really down for an extend period this time, over two weeks which is really unlike me.
And today I am starting to really see why. I have been doing EVERYTHING, and there is a lot to do. Yes I do get the 10 hours respite a week, I don't know if I could have made it this far without it.
Today, after cleaning house, cleaning yard, cleaning car, cracking cutting cooking and bagging coconut, making meals, I desperately needed to lay down for half an hour. He was watching his tv, so I thought I would chance it. I was just falling in to a deep slumber when I heard him out on the deck , dropping things, moving things, tripping up the stairs.
You know what it is like when you are overtired and then woken up after only 5 minutes. I flew in to a rampage, not at him as I know he can't help it, but just a general yelling and crying and I just could not stop for 10 minutes. Then I went to him and told him I am sorry, but I am simply extremely tired.
IF THIS MAKES ME A WHINER AND A NEGATIVE person, well, yes I am. Color me awful. That cliff over an abyss calls to me sometimes, no no no please do not think I am suicidal, but so stretched. What to do, what to do...? HOW DO WE DO IT?? Us that do it ALL???
Coco we scream- yell- cry-cry some more then wipe our eyes say I am sorry and start over again. I too am so tired and stressed even more -with this power outage -and extreme heat. The only thing keeping me going is the generator!!!!!!!!!! Now could we take up a collection to pay for the gas to keep the blessed thing running!!LOL
Betty - I am sorry you are dealing with the power outage. We had that for weeks in 2004 and again for almost a week in 2005 with hurricanes. SInce we got our generator installed -- no hurricanes have hit!
But I know what it was like, how hard it was - and DH didn't have any cognitive problems at that time! What you are dealing with is so much more stressful. I've been praying that power will come back soon for you!
Coco: Your day sounds like mine, only with different chores. ((HUGS)) to you for all you do.
Coco, YES, it is EXTREEMLY exhausting doing EVERYTHING! I too go off on a rampage, but sometimes I do direct it at him. Of course after a while I feel AWFUL & then I go & tell him I am sorry & he usually tells me that it's OK, things happen – which makes me feel worse. I must admit that I know that you do more than I do because you have to make your products for the market. I am retired & I don't really have to DO anything, but I am trying to declutter my house, but when he doesn't know where I am for 10 minutes (even though I tell him where I am going – silly me!) he sometimes goes out the front door looking for me. Luckily our daughter lives right across the street & he will either go there or to her next door neighbor's house. So usually he sits & “watches” TV & I sit at my computer. I too get depressed because I get so lonely, then I come here & I see that I am not alone.
Oh Betty, if only I were there to help you. I pray that your power is restored soon!
My husband was in full rage during the hurricanes Ms Magic was talking about. No power was the least of my problems. I am so sorry for all of you in the heat today with no a/c.
"Color me awful". I saw that movie. Whoopie Goldberg fighting vampires. Or was that scary movie 5? I can't remember. I'm like the Walter Mathau of encylopedia's. Make stuff up and smile a lot. Oh and hide dead fish in Gustaffsson's car. And ride around with Ann Margret. Ann Margret. (sigh). I remember her in some goofy movie called Bye Bye Birdie and I've been in love ever since. Anyways, I saw Coco calling herself a winner and I agree. We're all winners. As long as we're not wieners that's ok. At least Beaver Clever said that and I think his mom June agreed. Mrs. Clever. (sigh) Anyways, to answer your question I don't know the answer. How do we do everything we do for them? I don't know. Maybe, I don't know, do you think it could be...because your a good person? Let's ask Bill Murray (this is where you stop, think about Bill Murray, how he looks and talks, ok now read the next paragraph)
"Probably not. Let's check our list. 1. Sacrifice for another. Check. 2. Give up our lives to tend to someone in need. Check. 3. Face our own feelings and fears for them. Check. I don't know this is really close. 4. Stand by committments we made even when it really hurts us. Check. Yah, I think we're pushing it here."
Ok, maybe we should have asked somebody else. Billy Crystal? (you look marvelous!) Brad Pitt? (I look marvelous!) Tom Cruise? Maybe not. Maybe I should just go out on a limb here and say I'm pretty sure that whining and frustration are allowed when life is kicking our teeth in. Trust me.
Sorry about the power loss and hope it comes back on soon. Make a fan out of paper. Wave it slowly.
And just to get back on topic. I didn't go out on Sunday. But I am wondering what you get when you take a brother who drinks too much, a brother who is self absorbed, and a brother who has to be in total control and put them in a blender - what do you get? Jack Nuckelson? Glint Eastward? Ill Paunchino? Jerk Lemon? Cary Grunt? Spencer Crazy? Clark Unable? Humphrey Blowhard? Ahhh, men, you can't live with them you can't shoot them. I'm just happy to be one of the girls (sigh).
Oh, Coco, I wish I could be there with you. I have learned to not waste energy on anything when it accomplishes nothing but making me tired, not even emotions. Wolf, you crack me up!!! And you are cordially invited to be one of us girls! What're you gonna wear?
[Arnold Swarzenneger voice] "The black strapless teddy." (Ahhh! It's burning my eyes!)
Hey! I was on the local television station recently with an audience of about nine or maybe that was a dream but it went something like this:
[show host] "We're here today talking to a local resident about the challenges of being an alzheimer's spouse as he puts it. Welcome. Tell us it must be a lot to face."
[me] "Well, Bob, last week I had dark brown hair."
[host] "I see. Perhaps you could tell us about some of the more difficult moments."
[me] "Well, in some of the more difficult moments Bob, my head turned around 360 degrees and I spewed out green slime."
[host] "That's really interesting."
[me] "Not really. But that's what it feels like sometimes."
[host] "I see. And what can people do to prepare themselves?"
[me] "Well Bob, the first thing they should do is take their feelings and bury them in the backyard."
[host] "My goodness. Isn't there anything people can do?"
[me] "Yes there is Bob. They can look now for a good psychiatrist and a good pharmacist."
(theme music comes on prodding the host to end the interview)
I hope they ask me to shoot a commercial for Alzheimer's. I would have two people running happily in slow motion with soft lenses and pastel bright shades with Morgan Freeman reading the script listing all the 'side effects' of Alzheimer's just like those Celebrex commercials a few years ago. Droning on and on "may lose your will to live, never really laugh again, clean poop off the ceiling, gain weight" (why not?)
This all reminds me of that one intriguing thing I learned in high school. It was a short thing about two doors and behind one was a lady and behind the other was a tiger and the thing ended without telling you. What I didn't realize was that I got the lady AND the tiger behind the same door! NOT IN THE SCRIPT! CUT! Allright, from the top people!
If only it were like that. I wouldn't have the radio on like I'm with a real person. Hey, I'm not complaining. At least I have a radio unlike those poor people long ago who just sat around in the cave staring at the walls. Oh, wait.
Wolf, thanks for the smiles, was in need of a few of those tonight :)
Linda, such a blessing that your family is so close ♥
About the whole "strain" debate, there was a time when all I felt was strain. And there was a time when I did not like Lynn very much at all!! Hard to believe with all the mushy stuff I write *wink* And though I DID know it wasn't Lynn, it was the disease, it did little to comfort my broken heart or to help pick myself up off the floor after he literally knocked me down.
For me, this isn't a "journey" - it's a battle!! We were marching into a damn war zone. If we are lucky, we come out whole with the love for our spouse in tact.
Like Blue, I did find the love again (and I am so happy for you Blue!!♥) BUT, only after I was in the trenches of "I still love who he was, but I don't much like "him" now”
That is me being brutally honest. And I have no shame in admitting that at one point while Alzheimer's and I were locked in battle, feelings of genuine love for the poor bastard being held an unwilling hostage were far from my mind. I did the best I could in an impossible situation, the very best I could.
And I think that is true for many of us who did not have “easy” spouses. There is nothing wrong with feeling stressed, overwhelmed and strained. These are real, raw emotions.
Only years of being beaten down, ripped apart - or coming to “acceptance” brought me to the ‘signing of the peace treaty.’
I truly have come to a place of peace and I do deeply love Lynn with all my heart. In truth, I love him more deeply now than I ever did before. It’s a different love for sure, but I love him for who he use to be, and I love who he has now become. With that comes amazing inner peace!! And with that, the “strain” has diminished and I could sing “he ain’t heavy, he’s my husband” all day long. ♥♥
Nikki, I know exactly what you are saying and felt the same way a long time ago. I don't know if peace finally comes after we are out of denial or what. All I know is that I am there and for what it's worth...it's easier.
Nikki and Linda feel the same way. It is easier. Think it is ..no more denial, accepting it is a terminal illness, and loving my husband in his world and not trying to force him into my world. But we had to get to the later stages in order for us to feel this way and it helps that our husbands behaviors are manageable. My heart goes out to folks who cannot control spouses behavior...
Oh, those wonderful meds, to control dh's behavior. Without them, I wouldn't be able to keep him home. He would be a raging bull. Yes, I love him now, in spite of the past abuses. I am able to feel compassion, and to love him and take good care of him.
Here's a funny. I took him to Albuquerque 2 weeks ago. He lost his balance in the bathroom and fell into the tub. He ended up wideways, with his legs and feet over the lip of the tub. I knew I couldn't get him out of there, or thought I did. So I said, "Well, since you're in there, let's give you a bath." So we did. It's called making lemonade out of lemons you're handed. Anyway, after the bath, between he and I we used leverage to get him out. It was quite an eventful time. And fun. Yes, fun. Go figure.