Well, it's the 2nd of July - Canada Day yesterday and Independence day Monday....time for families and friends to visit. Brother and his wife were here 2 weeks ago for a few days. DH was a little ansy but not too bad. Daughter and 2 grandchildren here this week.....DH totally ignored them. They left early this morning before he was awake and he hasn't even asked where they are! I will never tell our daughter this. I think it was heartbreaking for her to see how bad her Dad has gotten since Christmas. Company coming at he beginning of August for 2 weeks. Ought to be interesting. Friends dropped by last night and he didn't even bother to say hello. Just went in the garage and swept the pristine floor! I need the company and conversation. I won't let this stop me from having guests. We've always had people come stay at our house and I figure as long as they understand then I'm not going to worry. It also gives them a better insight as to what my daily life is about.
Happy 4th everyone! Guess the trip to PEI is cancelled.
Happy 4th to you also. Wish we had some company that consisted of adults to visit with. We never have anyone come over and when we go somewhere my dh just wanders and continues to be handsome. I always tell him as long as he stays so handsome, I will keep him around. That makes him very happy and he struts around for a while with a huge smile on his face and grinning at everyone.... Other than that, we need some visits. Not that my dh recognizes anyone but he will smile and if they don't spend much time around him will never know he is sick........ Hopefully all has a great weekend....
Some family here for the 4th. Younger daughter, husband, and 2 teen-age boys arrived Thursday night, staying at the family home in Surry. DW and I joined them for dinner last night, will again tonight. Then tomorrow they will join us at our retirement home for Sunday brunch, and then they will do barbeque for dinner. They head back to Mass. on Monday. Our son is here for the summer (according to present plans), but can only join us occasionally due to his job. Next Saturday older daughter and husband arrive to stay in their house in Surry until October (she's the one who retired last month). My wife doesn't seem to recognize any of them and really doesn't respond. At dinner she is the same as always - eats her food, but doesn't pay any attention to the others at the table. I have to bring her back to our apartment after dinner, as it is easier for me to take care of her here.
Oh how I envy you with family to come on holidays! "Before" we always did that. Can't now and I only have a sister left - that's my family and she's 700 miles away! Enjoy them while you can.
Well it seems to be my lucky weekend. Our son, his wife, & 2 grandsons came in for the weekend & yesterday we had a family gathering with our daughters & 7 grandchildren & my DH did extremely well in fact he didn’t want to leave. Today we are having another family gathering with everyone again & he is looking forward to it. Sadly though, he thinks that his children are our “friends”. He has lost the concept that they are our children (funny though he refers to our grandchildren as grandchildren, go figure!)
Vickie, sorry you have to spend your days without family around. I know it can be rough. For several years I never heard from my brother even though I tried to contact him. Too bad it had to take DH's condition for him to return. ((((Hugs)))) to you!
Thanks, phil4:13; so glad your DH's brother did return! I have learned to cope with being alone on holidays - and all other days too, for the last 5 years. Thank God we traveled a lot BEFORE. I will do again, AFTER.
Aren't holidays the pits. Brings back all the good memories now gone forever. I feel so sad for the folks with EOAD who never had the good times before the bad ones arrived. I drove down to my daughter's house and passed all the many places that used to mean so much to my husband. Tomorrow we drive further south to Key Largo to meet up with other people for our shift with the stranded pilot whales.
My youngest daughters in-laws have been very active in our family since my daughter married their son a couple of years ago. They are really nice people and want to repay us for all the family get togethers and cook outs they have attended. However, that have no idea how to plan or host a cook out so they are taking all of us (18 all together) out to dinner! Kind of a different way to spend the 4th of July but I bet the restaurant isn't busy and I am looking forward to it. Hope to go see the fire works. Have not been since before Charlie got sick and I always loved them. They kind of lose something when you watch them on t.v.
I hate Holidays-they are only a reminder of what WE USED TO DO! I know it is wrong to envy others,but when you hear them making vacation plans etc.,it is so hard to know that WE can not do those things too. We can still go out to dinner but no more trips or vacations,I would not be able to carry enough bedwetting supplies for overnight trips. Sorry guess this is just me having another pity party!!
bak. have you been listening at my window these past couple of days? I have just made this point too...makes me sound petty and small and like the grinch that steals Christmas...I know others are entitled to their lives and to have good times and make good memories..I guess what gets my goat is the cavalier way other family members, more than friends, just send a note to tell you how great you are taking care of their dad or mom...and they so appreciate it...well how about not waiting for us to have to ask for help..for them to come stay and let us get out for a spell. Of late I have been reading of the trips to Ireland and the beaches, and our neighbor came by Thursday with a sack and asked me to collect their newspapers while they are off on their annual camping trip....as if I don't have enough to do without that...I did it just cuz now and then he will take DH to lunch or just come by for 5 or 10 minutes to visit with him...but still....a camping trip.... We used to go on fun camping trips...maybe I'll set up the tent in the back yard and pretend we are on a camping trip..just like I pretend with everything else nowadays.
Our family are fellow workampers and all the guest in the park. We had a great time out walking and talking tonight - got back to the RV around 11. We are told we can see the city fireworks from the park so will sit right in our yard and watch. The town does not allow personal fireworks so it is quiet - none of the noise of fireworks to all hours of the night.
I have enjoyed spending time with my son & family from Georgia. My son & I played golf yesterday...I hadn't played since last July, it was hot, but, I had a good time...although I must admit I felt a little guilty, leaving my husband. Today, we are going to younger son's for a BBQ...again without my husband. He will sleep most or all the time I am gone, however, it seems strange to attend family outings without him. I have experienced a strange feeling & wonder if others have felt the same way. My son asked me if they could spend the night, for some reason, it makes me almost panic to think of that many people here all night. I live in a condo, so only have one bedroom for guest now. I just can't seem to handle chaos of having 5 extra people. Makes me feel terrible, however, I told him I didn't think it was a good idea.
Kadee , some people can handle a house full of company and others can't handle the extra stress. I love having people stay here but I now find that I am totally exhausted for a few days after they leave. But for me, it is worth having people to talk to. I can totally understand you not wanting a houseful on top of caring for your DH. It's not just the stay, it's the leaving. You have extra laundry, dishes and cleaning to do as well as getting the place ready before hand. I would have no qualms about telling my family in friends that I just can't do it....unfortunately I see that happening sooner than later :-(
I am with my daughter and sil. We share this birthday week end and a very large box is sitting in my line of vision. Tonight we drive down to Key Largo for our great whale adventure. We are taking the 8pm to midnight shift to try to save the two remaining whales who beached. The baby weighs 1200 lbs.
I hope everyone has a great day tomorrow with all your LO's. We were invited to a block party but I declined because DH doesn't handle more than two people at a time. Plus I would be on pins and needles incase someone said something that DH would misunderstand. He can do that with me! Enjoy the day!
Mimi--you mention receiving a note from family telling you how great you are taking care of their dad or mom, that they really appreciate it, etc. We are 6 years post dx and I have yet to receive that comment, in writing or otherwise...
We aren't doing anything for the 4th. We did go to my sister's yesterday for a birthday BBQ. We celebrated my dad's 76th and my Grandmother's 98th. We had beautiful weather and my husband did pretty well. He ate so much watermelon that we had to hide it from him. He just paced around her house and yard and made stops for food. He must have had a good time because he didn't once bring me my purse and point to the car like he usually does. :)
Yes Mimi,I too get the "oh you are dealing with dad so well"and "you know we would help if we could BUT" Now tomorrow both our daughters are going to the country club for a cook out,swimming etc..Did they even mention wish you and dad could come--nope not a word!! ot that we would have gone but the thought would count for something. Am I just being petty? I know they have to live their lives too,but before this d--- disease it was always"Mom and Dad to the rescuse for them as baby sitters or what ever they needed,now that we can no longer be the helper,they just visit a little or call and go on as though all is right with the family. Sorry I am a real whinner today,but then again you all are the only ones I can vent to with out feeling guilty.
Just had a very trying time. It's such a beautifull day that I decided my wife and I should sit on the balcony of our apartment with a cool drink (ice tea). She got onto the balcony, but then wouldn't take one step to her side to sit on the chair. Instead, she went down on her knees and couldn't get up. When I tried to help her, she just screamed. Then kept saying "help me". I called for help from the nurses in Assisted Living, but even with 2 of them we couldn't get her up. Finally we called the rescue squad. They came with full gear including stretcher. After some trouble they were able to get her up and we walked her into the apartment to her seat. The rescue people kept asking if I wanted her checked out at the hospital. But she did not hurt herself. The only problem was that she was scared of being on the balcony. I won't try that again. This is the first time I have tried it this year. Last year she did fine.
marilyn, it is a shame no one has given you the expression of gratitude for all you have done for your LO. But sometimes, talk is cheap..and when these kids can spend so much time and $$$$ on going to beach trips 3 times or so within less than 3 months, and then European trips on the heels of that..when in God's green earth are they goning to wake the HE** up and realize that out of all those trips maybe they ought to come out to see their dad when they are all free at one time to do so? And then " just call when you need a break".... and then when you do and you are drowing under it all they can't even set aside some local plan that is not life or death to come help? It is just too hard to to cope with sometimes..
Marsh - sorry for the frightening episode and the loss of yet another thing with your wife. I am glad she is not hurt.
Mimi - as I read your post the thought went through my mind of how our kids seem to be thinking these days: disposable. Far too much is considerable disposable now - things and people and this seems to apply to parents also. It seems like when there is something in it for them - they are there. When there is not - they are AWOL.
Now Mimi, you don't seem like one to mince words!!! Do you tell your kids the things you said in your post? And they still aren't responsive?
I get many pats on the back from friends and others who do appreciate what I'm doing for my husband. However, what I was referring to was exactly what Charlotte said so well in the last line above. Good description, Charlotte.
we also spent the holiday weekend basically indoors due to heat - its amazing how dehydrated one can get really quickly. just finished treating DH for yet another uti. sigh. ongoing and nothing new for him. they have been the only thing constant for me now for some years. hes rebounded yet once again. no fireworks here due to drought conditions so we did watch the DC Capital special on tv. it really doesnt bother me much these days that family can do their own thing on holidays. after so many years you do tend to get used to it.
divvi So sorry to hear about your DH's UTI's. Do you know what causes him to have so many? My DH has a problem with Kidney Infections because of enlarged prostate and/or lack of complete voiding. His fever can spike quickly so I have to be very observant to catch any symptom quickly. We live in Texas too and the heat this year is terrible. DH is good to drink plenty of water because he really dreads the Kidney Infections. Sweet Pea
Today I woke up to yet another mess!!! DH had decided to wash out his Depends in the bathroom sink! Has this ever happened to any of you? The sink is now clogged and I am waiting for a plumber to come fix it. It is a mass of gel and will not plunge. It is gotten so that I hate to get up in the morning because some new disaster is waiting for me.
Marilyn, me either and it has been 5 years. But like you friends and acquaintances do frequently give me the affirmation I would long to hear from family.
Mimi, I hear you! All I ever heard from my son (the one whose number you had so well in my long posts about moving to Richmond) was about the interesting things they had going OR how difficult and stressful it is to him having 2 small children. but I cant get started on that today. have 7 hours of driving to get done.
We are now in Albuquerque and on the last 2 days of our 6 week road trip from AR to CA and back. frustrating, exhausting and truly wonderful and magnificent at the same time. DH has enjoyed this so much and I feel closer to him than ever before. I am taking a page from Niki and trying to live one moment at a time for now.
Divvi, good on you, mate (I've just been watching the Australian movie, "Kenny") for turning around yet one more infection. You have the double challenge with the heat and keeping him hydrated. Thinking of you with warm affection and sending you my best wishes.
sweet pea yes we are in the same boat with enlarged prostate that inhibits complete voiding. as we well know, this will cause infection from bacteria colonization. its been going on many years now. so far we treat with antibiotics and he rebounds. it can escalate quickly like you say. i feel i am an old hand now at recognizing the symptoms. :)
mary75 back at you 'matie'.. grin. love those aussies too!
Kind of quiet on the board. I woke up again out of a dream about my first love in highschool. I don't know why she's haunted my dreams all these years. I got up and pulled out my highschool yearbooks and really went through them. What a blast.
I can't remember names these days; but, I pulled out most names instantly. I looked at this girl where I wrote the words beside her graduation picture and wondered why two years leaves such an imprint. On the next page were both me and my wife. It was great to get absorbed back into those years for a bit. They were as real a part of me back then as these days are now.
It's high summer and I haven't been out once. No walks in the woods, swimming, farmer's market, drives into the country. Nadda. She can't walk well and cars are becoming an issue - but the truth is I've given up on those things and pretty much everything but dealing with this. The block is that my DW can't walk so well and gets caught up by changes in the colour or texture of what she's walking on. She's not sure how to deal with white stripes on pavement or dark flooring to light flooring. If I go to do the thing I go alone and if I go with her we don't do the thing - we look at it. I look at it. She doesn't realize she's there.
I realized a sad thing this morning. I realize I've shut off my feelings. When things I'm doing go wrong I get so horribly frustrated it's almost overwhelming sometimes which is the insight into the pressure I actually feel. And when I get either angry or emotional it's such a strong swell I have to manage myself away from there because I can't afford to let those feelings swamp me.
I'm like a professional killer with no gun. My only focus is to deal with it and any 'me' that comes out is going to be a problem and make things harder. I'm learning to stay detached from all the things and feelings that used to be the best things about my life.
After more years of this kind of unhealthy existence - I need to come out and replug into the world I've been avoiding, friends who have changed, and those involved-in-my-life feelings that I have long locked up somewhere.
Wolf-we moved around quite a bit when the kids were younger. Often after years had passed they would express a desire to go back to see the old places. I warned them that you can't go back. Back has moved on without you. People and places change and you no longer fit into your former spot. It is the same with us. After putting our lives on hold former friends have moved on. When the "after" arrives it's like starting at square one. I had to recreate my life and that was not a terrible terrible thing to do. In a way it's like getting a new start at life. Big difference is that hopefully you start over with new knowledge and compassion.
Timing can be strange. After my post I got a phone call. After the caller was widowed she alienated old friends by going after an available bachelor. She stomped on everyone to catch him. They live in their own homes in my community and she remains at his beck and call. The three of us were to go to Meal and a Movie at our temple tomorrow. She just called to cancel because the boyfriend doesn't like the menu. Apparently she does this often. Lives in fear of losing the man. I don't call this living! By the way-I forced myself to call another married couple and we will go together. I'm still trying to figure out this widow bit.
<<After more years of this kind of unhealthy existence - I need to come out and replug into the world I've been avoiding, friends who have changed, and those involved-in-my-life feelings that I have long locked up somewhere.
I wonder how you do that?>>
Well, you just need to make a start on it, Wolf -- that's all I can tell you -- one tiny step, followed by another and then another until you're reconnected to the outside world. Trying to visualize/plan the whole process beforehand is too hard -- just take that first small step and then follow your nose and go on from there.
Sort of reminds me of a story I think I posted on this forum a few years back about this stable boy who was very smitten with the Princess whose horse he tended. He finally confided his feelings to an older and wiser stable hand, lamenting that the Princess seemingly didn't even realize that he existed. The older stable hand agreed that the Princess probably never noticed him, and suggested that maybe he ought to try to do something to call her attention to him as a person rather than just as a servant. So that night the stable boy could hardly sleep -- trying to devise some plan for getting noticed. After tossing and turning for most of the night he finally came up with a scenario: the Princess always approached her horse from the rear as she came out for her morning ride, with him holding the reins until she was mounted, so he'd weave a colorful ribbon into the horse's tail, which the Princess couldn't fail to notice, and then when she asked about it he'd say that he had placed it there, hoping to please Her Highness, and she'd say "How nice of you -- would you like to accompany me on my ride today" and he'd say "Nothing would please me more, your Highness, and I've prepared a picnic basket in case you should become hungry or thirsty during our ride", and she'd thank him for his thoughtfulness, and he'd saddle up another horse and off they'd go until they approached a sun-dappled glen in the forest, where he'd suggest that they dismount and let the horses graze for a bit while they enjoyed a noon repast, and then he'd spread a blanket on the ground and they'd sit down and he'd touch her hand in offering her a sandwich and she'd feel the electricity in his touch and then one thing would lead to another until they would finally embrace and make beautiful love. So he was up before dawn, plaiting a colorful ribbon in the horse’s tail, and when the Princess arrived for her morning ride and inquired about the ribbon, he excitedly replied, “It’s a ribbon in the horse’s tail – let’s screw!”
Heading out for some respite tomorrow. Definitely needed to get away. This is the first time so I am worried how DH will take me being gone but our son and his aide will be here and I'm not going to let it ruin my away time. I have found that I am arguing with him more (even though I know better) and losing my temper with him.....definitely signs of caregiver fatigue! Hopefully I will feel better when I get back although I am going to start looking into care for him. At least in the short haul.
I'll be out of touch for the next 1-2 weeks. I am having my knee re-replaced on Monday. It was done 15 years ago and I have worn it out. Our 2 daughters will be taking care of DW, and me. We will be staying at the family home where there is no internet connection.