I read the pain and agony and loss expressed by so many people and I respect their pain and agony and loss. My brain tells me it is the future. But I have a life and a wife to live with NOW. I took DW to a lunch today with people we had not seen since college. She looked lovely. She was able with some effort to hold up her end of conversations. She is not an idiot or a vegetable or an invalid or an object. She is my wife and the love of my life. She is a grandmother. We modified her earrings tonight to put "shepherd's hooks" instead of the original pin fastener s that give her trouble. She ate salmon for lunch and Mahi mahi for dinner with enthusiasm. She was very very romantic.
I feel a little guilty sharing these pleasures with people whose pain is so raw and fresh. But perhaps like the cheerful words I heard from a legless Marine at the comedy club, "everybody has something that someone else needs, and everyone is missing something that someone else has" I said I had a Marine joke and he said smiling "you know I can still punch your lights out from this wheelchair"
Crushed, I am so happy for you and your lovely wife to enjoy the time together before this disease takes it all away.GO FOR IT,enjoy every day.I do like hearing about others ,good, I rejoice for them,bad, I pray for them and wish I could help.We are all in the same boat,eventually it sinks but we all paddle as long as we can and as best as we can.
Absolutely, Crushed. During the few years leading up to Jeff's placement, when I could still take him on travels and try to keep as much light and pleasure in our lives as I could find, I blogged about many aspects of Alz-spousing for the Fisher Center. In general, I found my efforts to look at what WAS possible, and keep my spirits afloat were positively received.
I know what you mean about feeling guilty about sharing pleasures when there are many who, at any given moment around here, may be much more aware of the anguish this illness is causing than these redemptive moments...but I think that you've got the right attitude.
I am not fooled for a moment that you are in denial. Your handle says it all. I was crushed too. I could not have loved my husband more, and I could not have imagined a worse fate befalling the both of us, but it is true in Alz-spousing as much as it is true in all of life--bad stuff is going to go down here in human-ville. We're not going to be exempt. But if we can live in these lovely moments, absorb them, store them, breathe in them--we're going to come out the other end with some life left in us.
Don't forget you can also share the deflated moments, and you'll find empathetic ears. But keep your equanimity. This is a hard road to be on, but we should stop, smell, and share the roses, because there are some.
Crushed I did not get much time from when he was diagnosed to now in late stages, just three years. I did take him on some last minute travels, and took good care of him. BUT, when I look back to those two years at home, there were virtually NO lovely times, and for that I am very sad. How I wish I could have still been his lover and all those beautiful things you do together. And I wish so that many here can do that too. God bless you for loving her so. You are both so blessed to have each other.
I find the roses in the unusual places now. When I walk in to the lobby of the Veterans home, and have to greet ALL the residents not just my husband. When they make me smile asking if I sent in their payment for the Sears catalogue.
When I go to a AZ support group and know that they and only they, truly understand and seem to care for me.
As for my guy, I love to shave him, cut his hair, rub coconut oil in to his skin and make him all handsome emily* it is so good to hear from you, your journey is always close to my heart.
Coco our journey was so much like yours, so fast. From dx to his passing was only 3 years and 10 months. I was in crises mode for most of the time. I had DH and our youngest DD, she is almost 18 now. There was no us time at all. We did go out to eat when we could, but then again I had no idea how long this would last and was very careful with the money. And almost from the day of dx DH seemed almost unable to be left alone so going places took so much planning. And like I said before, the sex part left us long before the dx. We just do what we can, when we can and hope for the best.
Crushed - your name says it all Enjoy every good minute you have. My dh was never unable to take care of his personal needs. He certainly wasn't capable of taking care of himself alone and I needed to monitor every minute. When the decline came it was steep and quick and he was gone. So treasure every minute of the day and do all you can both enjoy. It is a sinking ship but you're still afloat now and that's what you've got.
Go for it! There is still a lot of joy to be had! We have been on this journey for eight yrs and have shared much joy! My DH has really been on a downward spiral the past few months, but there are still moments, hrs sometimes days of joy. Also much sadness, but I prefer to think of the positive if possible. Good Bless each of you!
Crushed Savior every possible minute you can!!! There is absolutely no need to apologize of feel any guilt for doing so!! Continue to go for it! You are doing the right thing for your DW and yourself.
Some tips: As the disease progressed my DW was a "wanderer" It was impossible for her to remain seated for the duration of the meal, yet she was still capable of using her utensils properly enjoyed going out. Solution: I began taking her to buffet style restaurants. Her wanderings interfered with no one and she was always in sight. Solution 2 Works even for fine dining : Get the least desired table in every restaurant adjacent to the bathrooms. She could get up from the table and wander into the ladies room 30 times during a meal, but interfere with no one. Solution 3 Any kind of finger food when she was no long able to use a fork I'd take her for PIZZA, Heros (Subs), Indian or afghan restaurants where wrapping your food in piece of bread is the norm. We were able to go out for Pizza several weeks before she passed after a 6 year battle with Cancer and AZ This sounds a bit like your DW: I can't count the hours sitting along side of her while in the under the hair dryer after having her hair cut and colored, She'd wander up from the drying if I wasn't there to watch her She always had to have her hair done properly even at the end... CONTINUE TO Enjoy each and ever moment!
A few tricks She does her own contact lenses, but they are now the same for both eye, so it doesn't matter if they get mixed up. I pick out her clothes, so I can throw away the crummy worn out stuff. Others go to Goodwill The same lady has cut her hair for 18 years. They take good care of her. I tip well. I tell her I need smiles, and I get them
And there are the Great lines I'm watching the NFC championship. She says "do we care about either team?" I said "no" Why are you watching ? " I'm a guy, it's what we do" Oh she says "you mean it's stupid !!
You just keep enjoying all you can ith your wife, Crushed, and make no apologies for it. Even though my wife is further along and is now in assisted living, I still find pleasure with her whenever I can. This afternoon, in the snow, I took her out to Burger King and we sat, watched TV, and enjoyed our burgers and coffee. Simple pleasures but they mean everything!
a clothing tip. There will be days finding the appropriate out fit may become the subject of contentious debate, I ended nup getting mos of DW clothing from catalogs like Orvis or LANs End We (I) Live in so Fl, shorts & tops Make up 90% of our wardrobe. ordering 2-3 alike assures you of having whatever she wants whenever she wants it I
Fortunately DW was a classic "math girl" Incredibly brilliant and terribly dressed. If I didn't put out something new she would just wear yesterdays. Once she was going to testify to Congress. She put on a wrinkled pleated skirt suit. I made her take it off and Ironed it while she practiced her testimony.
A colleague said she wanted a "wife" just like the one DW had. i.e. one who could iron a pleated skirt !! It's a difficult day. Thanks for reminding me of the good times.
Crushed, Your wife is very lucky to have found you to be her "wife". I can feel your love in your posts. Sorry you are having a difficult day. My DH was a "math guy". I always said he was like an absent minded professor, I think that is why he hid the signs of AD so well, for so long.
Our Mothers always said we both "married up" :-) What is bizarre, but undoubtedly good fortune is that DW's "executive functioning" is excellent even if her memory is poor. She does sensible things and just forgets them. I made a laminated Memory card for her pocketbook with phone numbers addresses medical information etc. She has trouble with some terms so she makes up new ones It can be funny
She says "I need the opening thing" I hand her a can opener, No she says "the opening thing" "I don't know what you mean." "Silly" she says "its on the same ring with the starting thing" "you mean for starting the car?" YES Do you mean a House key? "yes.......what took you so long?"
Coco and blue* - you have both been on here much longer than I have, but it is reassuring to know your DH's declines have also been relatively quick. Sometimes I think I am the only one. My DH has only been exhibiting symptoms since mid-2011 and we didn't have a true diagnosis until 2012 but he is so low now that I have started the search for placement and am hopeful that something will be available in the next few weeks/months. He is just 64 and some days I wonder what happened to my life. Crushed, as everyone has told you, enjoy the good times while you can and never apologize.
DW could not figure out how to plug in a usb connector today. She used to build computers from chips and circuit boards. She found a band aid for me when I cut myself, but could not remember what it is called. At the store she insisted we were out of Granola bars (favorite snack) I bought them and added them to the large pile in the kitchen But so what ? I tell her , as always, that she makes me a better person. She is the love of my life I cherish and treasure and protect her. We laugh and love and live I read her a poem I wrote a few years ago I may have posted it before but here it is anyway
Footsteps in the sand Stretch back till time began And forward lies a path We cannot know
But here and now we walk And love and laugh and talk And give each other life And love and hope
The birds are singing near The touch of dawn is here The golden sun is climbing In the sky
For all must walk this way Draw pleasure every day And leave the dark and cold behind your back
My love and I have come From dark and cold to sun And now we feel the warmth upon our hands
We have this day to live Our love and hope to give And we will gather treasure while we can
While there is breath in man We make life what we can And take the sun and sand and sea and sky
We take them for our own Our life our love our home And we will walk together You and I