I have five blue jays in my backyard. Who says an old dog can't learn new tricks? It only took them a few months to teach me to buy peanuts and fling them out the right window.
Wolf, what an appropriate heading for a month that is probably the most difficult to deal with, because of what the holidays mean now, and what they used to mean before AD struck so hard in our lives! I am trying to learn to be gentle to myself, before my strength gives out and I can no longer endure. We had a snow storm on Wednesday, and I had to shovel out to go to a doctor's appointment. I woke up this morning to almost as much fresh snow, and it is still falling. I had two options - I could go out and start digging out so I could get to church, or I could call my Sunday morning care giver, and call our choir director, and let them know that I was staying home. I chose to do the phoning and stay home. I will spend the time putting up our Christmas decorations, and I will deal with the snow later in the day, at my leisure. I guess the message is finally sinking in, I am not Super Woman, and that its okay to be gentle on myself from time to time.
I just love Christmas and everything about it and I always "did it up big". I guess like Wolf's blue jays, this disease is teaching me. Less cards being sent, less decorating, less baking, less of everything while still hoping to hang on to the beauty and wonder and essence of the season.
bqd, I think you made the right decision. If we don't acknowledge the energy that being an Alzheimer spouse takes out of us we will eventually crumple. Learning to prioritize and be gentle with ourselves is important I think. Lord knows, this disease does not treat us gently.
Wolf when I live up North we had an Agway store that used to sell bulk shelled sunflower seeds for bird food. Shelled because the hulls killed the grass under the feeder when the snow melted...If you want to turn those five Blue Jays into 50 give then the sun flower seed, Most likely you'll also attract a flock of red winged black birds. It's only here in Florida will one spot the silly cone enhanced nymph with great regularity on the beach
Wolf, I too like the heading of your post. I think enduring is about all we can do. I've been wondering if others get especially "down" at this time of the year.
Yes, Mim you can say I feel "down " too. I am missing the enthusiasm I used to feel this time of year. Last year I tried hard to make it a memorable Christmas. Memorable...what a choice of words! after Thanksgiving, my DH thought Easter was the next holiday. Sooo sad .. when I tried to talk about our usual Christmas plans, he didn't remember last year.
I have no interest or motivation to decorate and do all the things we do for the holidays. It just feels like so much work.
I do have children and grandchildren expecting to come to celebrate, so somehow I will do it and yes endure.
Yes Mim and Lorrie I too feel "down" as Christmas is approaching. I do not have any enthrusiasm for anything let alone Christmas. He was placed and has adjusted well I think. It has been a real journey for me also. I am doing better and no longer am plagued with guilt over did I do the right thing. I am still in the Medicaid mess but God willing it will be done before the end of the year. I guess Medicaid could be my Christmas present. He no longer knows what day it is or when Christmas is. We are having our family celebration on Christmas Eve and I will dutifully take him and return him to the facility and then come home to an empty house. I thought that perhaps inviting someone over and providing some hospitality might help but like you Lorrie, everything feels like so much work and I am so tired of work. I just cannot even get the initiative to invite my friends over. I too have children and grandchildren and so I am going to be grateful for that. I also have a very supportive friend who is there for me. I am so grateful for that. I will focus on being grateful for my health, having a roof over my head and food to eat as many people this time of year do not and for that I can be grateful Yes we will get through it all one day at a time.
CO2 I have lots to be grateful for too. Your list could be mine. I try to focus on that, but I just have no energy. I find it hard to even focus on the mounds of everyday paperwork I have let accumulate.
I have done Christmas shopping but even organizing my lists and thoughts is hard. Does anyone else have trouble concentrating and lack the motivation for anything some days?
Well I actually have a little of the Christmas Spirit. My daughter & her family came over last night. She made a meatloaf for dinner & while it was in the oven she & my grandson helped me get the Christmas decorations down from the attic. My grandson put the tree together & then they all, daughter, grandson (13) & granddaughters (8 & 2) decorated the tree & put other decorations around. (I forgot how much energy a 2 year old has!) Then, when my son-in-law got here, we has a delicious meat loaf dinner. They left the house a mess with empty boxes & decorations strewn about, but that's OK, it was nice to have them here instead of being here all by myself. I straightened up as much as I could, because I'm going to be out of comission for a few days (actually my right hand will be out of commission). I had surgery on my thumb earlier today. I have “trigger finger” in my thumb. I could not bend my thumb. So now my hand is all wrapped in a bandage & I am typing with my left hand (& yes I'm right handed so this is time consuming!) I go back to the docto on Friday so he can check it & hopefully he will put a smaller wrap on it. The pain med is making me tired so I better stop before I fall asleep at the keyboard!
I too have no enthusiasm for decorating. DH is confined to a hospital bed in the Master bedroom. Do I just decorate the bedroom? No, because DD lives here too. And then , there is the outdoors. I guess I need to make the place look like we care. I have hospice aides and or nurses and social workers here 7 days a week. I think the Holidays make even more stress than we have already.
We had our Downs Syndrome and profoundly deaf son home for Thanksgiving and outside of the fact he is in a full leg brace for a broken kneecap he is really no trouble, but the addition of dealing with him and his brace was just that much more stress that I didn't need. I spent all day working and then sat in the bedroom feeding Ron and myself while 2 daughters, son and 2 grandchildren ate in the dining room. I guess its the same way it will be for Christmas.
MaryinPa, How old is your son with Down Syndrome? I have a grandson 14, and we adore him. he comes every Friday nite and spends the nite with us. Him and papa are and have always been so close to each other.
Ky caregiver, our son Mark is 44 years old. At age 4 he had spinal meningitis which left him totally deaf. At age 7 we determined that the local school system couldn't deal with him. None of the special Ed classes knew what to do with him. After a long search, and visits to many facilities we found the best residiential facility in the area that specialized in multi-handicapped children. He still knows us and likes to come for vacations. When its time to go back he is ready and willing to go.
December, Christmas, that stuff. Hmmm. Keeping it simple, as much as possible. I have a photo of Jeff from the last Christmas he was home, 2011, dozing in a chair with a cat on his lap while I decorated the tree. He didn't know what time of year it was anymore, or participate in any way, and his decline turned sharply downward with psychosis problems within a month. But it's a peaceful sweet picture.
This year--hoping the kid's college grades are good enough to keep him in school for next semester!
What a night! Turned the TV off at midnight and went to sleep. Woke up at 1:15 to use the bathroom and the hot water was frozen. Cold water was left running and I should have known since last winter the hot water froze twice. I turned the furnace up, opened up under the tub trying to warm all the spaces in here that were not heated. About an hour later Art finally woke up asking what was up. We ended up bundling up, going outside to the water panel with the hair dryer. Took the cover off and blew heat in. It freezes where the outdoor shower is which we have never used. Took about 5 minutes to get it running. Closed it all back up and went inside to warm up (probably single digits outside).
Water is running but we are not getting hot water even though the tank is heating. Went back out to make sure the hot water bypass did not get changed - it was fine. Left water running, finally went to sleep sometime after 4am, but I keep waking up to make sure water is running. Now to go out to see if something got messed up on the back of the panel when he stuffed the insulation back in.
Did I say I hate this Alzheimer's and weather this cold? Should have gone to Arizona.
The winds are already starting bringing the wind chill down. They are forecasting it to be -20 to -25 this evening/tonight/tomorrow morning. Just to survive this Artic cold. Oh, the normal temp for now is 40/27 so like when we went to Fernly, NV it was coldest one in 20+ years, looks like it followed us.
Update: got all bundled up to go troubleshooting but tried the hot water one last time and - HOT WATER! Praise the Lord.
Update at 2:50 pm: only got hot water that one time. Now back to just the chill off it. They guy that replaced the thermostat came out and adjusted the air but it has been a half hour and still no change. For now will just keep the water running so it doesn't freeze - warmer temps due Tuesday.
Looking forward to our youngest daughter and her husband home for a few days. Our oldest daughter and her husband and new grandson will stay with us also. It is nice when they are around. I have someone to actually carry on a conversation with. Today I have spent all day looking for DH's keys. He doesn't drive, but carries his keys around. Usually I can backtrack and find them. Not today. DH doesn't even remember what he is looking for. I am ready for the rain to end so he can walk around the yard picking up one leaf at a time. That got on my nerves but I would trade it for the lost keys. I am tired! I know everyone here can relate to that. So much going on in the past month. Our grandson was born, my dad had a pacemaker put in, my niece graduates from college, thanksgiving, and Christmas. I am taking a week in November and someone will have to step up and take care of DH. Sorry rambling. I hope everyone has a great holidays.
There's not much enthusiasm, motivation or interest here either. I started out with ideas I thought I would like to try, but it's only the 6th & I'm over it already!! Just decorating the mantle & the table top tree has taken 3 days! I don't have grandchildren to liven things up a bit (don't know if that's a good thing or a bad thing!) , no social plans as of yet, so I guess I do these things for myself. D. seems to enjoy the decorations & I like it once it's done, but sure not the same anymore. I'm not even putting out things I've loved - I'm done with it. I know, I know --- Scrooge! Our sons will be here, but they're grown men - how much fussing do they need? I'll "endure" & deal with things the best I can.
It's such a tough month for many of us. I was sitting here painting and listening to music. I have a blueberry pie in the oven. It's snowing and my neighbour plowed my driveway. Two rabbits were in the back a little while ago. They had dug through the snow into the pile of birdseed and were chomping on something. It was dark but I suspect the corn.
I came here because it's one of the slow periods on the board and it really is a hard month and I remember coming here three and four years ago and finding someone wrote something while I was a 24/7 caregiver and to be honest that was important to me then even if I had to struggle through poop queen ceremonies to feel a connection to a world I actually did belong to when so much of my other world was shredding.
If there's anyone struggling tonight I'm writing this to you. My christmas tree has been up for four years. I almost took it down this summer. None of the lights work anymore and two thirds of the bulbs are missing. Half of those were destroyed either when my wife repeatedly wrestled with the tree when she was here with me or when she lost touch with what she was doing and moved them around or just broke them. I have collections of christmas ornaments because I still come across one once in a while. In her makeup bag I went through recently there was one.
This christmas is different. Three years ago I chased my wife around the house on christmas trying to get her to stop pulling vents out of the floor among a thousand other things, two years ago I sat there by myself staring out the window, last year I turned down two invitations and sat there by myself staring out the window listening to christmas carols and watching christmas movies - sighing and crying. This year I'm spending christmas with my friends. My cats who stick around because I feed them but are my family now. My movies which I play on the computer while I paint. My wife who has lost almost everything now and sits in a wheelchair almost catatonic.
It's not much different on the surface but it's whales different inside. I never told anyone this before but my real struggle is between bitterness and melancholy on the one hand and gratitude and appreciation on the other.
I'll cut right to it. You have sixty seconds to live. What do you think about your life.
Remember that if your answer stands up as honest because underneath the passing moments, that's the truth.
I found Scrooge the movie. I'm watching "It Happened One Night" right now for the fifth time in a couple of weeks. I'm in love with Claudette Colbert and the 1930's. But tomorrow I'll put on Grumpy Old Men. (Hello Moron) I know every single line without fail. It will be playing while I watch my stocks trading. I won't be watching that either. I've fallen in love with painting again and I'm pushing that envelope a mile.
I wish my sidekick were here. I wish it were three years ago and I could still get her to kind of dance to David Bowie (Glenn Miller if you prefer) but those days have passed just like being woken up and racing downstairs to piles of presents taller than an elephant while the kitchen smelt like alice in wonderland and cookies and cake were everywhere and those good times went on forever.
No they didn't; but, nothing does and if good times put on weight I would be a fat man that would put Santa Clause to shame. Nothing is enough though. Only way to play it.
Glenn Miller, In the Mood
https://www.youtube.com/watch?v=_CI-0E_jses
Scrooge the movie with George C Scott
https://www.youtube.com/watch?v=JvdMjXhPGd0
It Happened One Night with Clark Gable and Claudette Colbert
https://www.youtube.com/watch?v=aASIcbo3u6E
Watch or listen for just a few minutes somewhere if you can or want to. I had no time for these things while I was caregiving, but they have become invaluable to reclaim in looking for my life afterwards.
Wolf, thank you for this post. I'm so happy you are back into your painting. My son was an artist and as I look at his paintings (hanging all over this big house) they give me some calm and peace in this month of December which has only brought sadness to me. Not sure if I'm up to being with people on Christmas Eve or Christmas day, but I love It Happened One Night and haven't watched it in a very long time. I shall do that and think of you and the others here who still are struggling with this 'long good-bye'.
I had planned to have lunch today with a dear friend. I had even plugged the block heater in on the car last night, as our temperatures dipped to - 11 F, and I wanted the car to start in the morning. I was SO looking forward to the lunch, as I have been down lately and need some cheering. Well, wouldn't you know it, the bus for the day center "forgot" to pick up my DH, and by the time they had realized the error, it was too late for me to keep my luncheon date, and I had cancelled it. I am proud of myself, I didn't break into tears, and I didn't shout in anger. Instead, I decided that I would make the best of the day. I knew that because it was so cold out, stores and restaurants would not be busy, so DH and I went out for lunch and then did some grocery shopping. We didn't need much, and as predicted, the store was almost empty, so we could take our time. Even the check out clerk seemed to understand that my DH needed some help with reasoning, because he was quite pleasant with my DH when he attempted to load the cart before the groceries were bagged. All that being said, I do hate to rely on other people in order for me to get out and enjoy myself. I miss my independence, but I guess I have the strength to endure!
bqd, I must say you handled it better than I would right now. I probably would have come unglued, the way I'm feeling at present. I wrote in my journal tonight for the first time in a long time & realized that I'm on the ragged edge for the last couple of days. Kudos to you! :)
bqd, I agree both that you handled that well and I especially agree because I remember how upsetting it was when the breaks I was counting went wrong. Sorry you missed your lunch you were looking forward to; but, remember as you said that you actually do have the strength.
Mim, I know that ragged edge. It's pretty nervy of us to have feelings about this disease destroying huge parts of our life while demanding we do more and more.
In Tale of Two Cities, Charles Dickens (had a mental block and had to look his name up) has his hero Sidney Carlton give his life so someone else could be spared. He says "It's a far, far better thing I do today than I have ever done before".
The thing is from noble deed to death was like twenty minutes and if Charles Dickens spent some time with all you guys I think he would have learned what real sacrifice is.
Mim, I know how you feel - I was there earlier in the week, and had been on that edge for some time! I think if the same situation had happened on Monday, I would have reacted quite differently, probably screamed in anger at the day center staff, or broken down into a fit of tears. This disease causes such a roller coaster ride of emotions for the care giver, and the changes can really take their toll.
Our little outing yesterday, and the upset of routine took its toll on my DH as well - he was sundowning quite noticeably, and quite antsy, said his body was tired but that his mind was going in circles. It was only 8:30, and usually he retires for bed after 10 PM. So I gave him a Lorazepam (.5 mg) for the first time and he has now slept around the clock.
And yes, Wolf, years of "noble deeds to death" are a real sacrifice, and one that we are all experiencing or have experienced, but certainly not something we would choose. We all have the strength it takes, even if we don't think so.
"The thing is from noble deed to death was like twenty minutes and if Charles Dickens spent some time with all you guys I think he would have learned what real sacrifice is." Wolf, you gave me my first chuckle of the day. Exactly.
Talk about roller coaster emotions! Today, things are on the ascending side of the coaster, tomorrow, who knows!! I took him grocery shopping with me, stopped for a coffee- hopefully, I wore him out! He's doing okay & so am I. Your comments all mean so much to me - much appreciation from me to you....
I have gotten through the birthdays, the anniversary, Thanksgiving. They are just single days, but Christmas...it's an entire season! No matter how far gone Lloyd was, he was always like a little kid at Christmas. I would take him for rides to look at the lights. We had Christmas Eve at our house for years and there would be 30-40 people...family, grandkids, grandsons' girlfriends, grandsons' friends (adopted grandkids). I decided to go ahead with Christmas Eve, but now I am absolutely dreading it! I am remembering last Christmas...Lloyd getting lost in the crowd and being positively ecstatic every time he would find me. The kids are coming home and the house is filling up. My grandson Ben has been living with Maria and me for a while. Alex came home from college last night for the month...Andi with him. Sebastian will be coming home from the Navy soon for Christmas. Kate will come to be with him. The boys' soccer buddy Makenna is home from college with her baby Gavin. Ben, Stacee, and Makenna are sleeping in the living room downstairs. Gavin is sleeping in the pak'n'play in my room. The house is filling up and yet it feels so damn empty. After dealing with the out-laws and getting over that, I have been doing really well, but Christmas is making me sick to my stomach...literally. All of you without stars, please enjoy your time you have left. Do I wish he was here? Selfishly-yes. Realistically - no...it was time for him to go. He had suffered long enough. My mind is realistic. My heart, soul, and spirit are really selfish!
I don't have a star but I am having a very difficult time with Christmas this year. DH is in LTC and the family all have other plans for their holiday celebrations. One is out west with family there, one is ill and staying home with his wife , one is in California at his home there and the other two stay home for Christmas. DH has trouble with loud groups and busy places, so we will be in my apartment for the day. I'm not sure if he will be here for just the day or if he will come for Christmas Eve. It all depends on what he can tolerate at that time. I just never know until we get there. All the ups and downs decide for us. I expect that there will be quite a lot of quiet and alone time for me this Christmas but that is what I have now and likely for the future. Christmas has always been about family and we always travelled to have dinner at one family or another but not this year and not ever again. I just feel bad that the children have forgotten all the travelling to them that we did. I had hoped that one if them would travel to us this year but, not to be. I will still have all the lovely memories even if DH can' t remember them! We will still have a good time together. It will be as good as we make it, right?
It's funny, the things that hit that little sore spot inside—one we may not even be aware of having. I was talking to someone this week, and thought I did pretty well having a (normal) conversation. Then she told me she had an advent calendar for me, if I wanted it. I tried to explain to her that we don't really do much for Christmas now, for a lot of reasons (no money and no energy, just to name two). But it's also less painful if we sort of pretend it's just another day, and don't think too much about Christmas celebrations gone by and all the people we used to share holidays with who have written us out of their lives. I didn't get a sentence into the explanation before I started to cry, and I hardly ever cry in front of people. But it did hit that little sore spot in my heart that I was trying to ignore. Guess I didn't do as good a job of ignoring it as I thought.
Wolf—I agree with the period of time making a difference in the sacrifice. One year slides into two, and before you know it you've added a decade to that one year or two. It's hard to calculate the cost of a sacrifice like that. Almost, if I had my choice now, I'd vote for giving myself in the Charles Dickens sacrifice. Brutal, yes—but then it's over. This is brutal, too, but it goes on and on and on…. And in the end, you still lose the one you love, which doesn't seem a fair trade for the sacrifice.
"One year slides into two, and before you know it you've added a decade to that one year or two. It's hard to calculate the cost of a sacrifice like that. . . This is brutal, too, but it goes on and on and on....And in the end, you still lose the one you love, which doesn't seem a fair trade for the sacrifice." You nailed, it Jan K!
Being in the trenches is the only way to know this, and that doesn't seem fair either.
Grateful to be feeling better the last few days. My brother visited for two nights. What a joy to have someone close to carry on a conversation! DH also enjoys his company and he is calmer in his presence. I went to a new support group while he was here with DH. Spouses only and much commonality ...I will continue to attend.
Trying to change my negative thoughts by keeping count of all I have to be grateful for. Working on lowering my expectations and Trying to enjoy the simple things. I know there will come a time when I wish for these days.. I still could have my DH help with the tree (I was very patient and we took breaks). Decided to do less and enjoy it more. It helped for me to decide what was most important and say to myself that I don't have to do everything.
I did have a few HAPPY days! I smiled and laughed with DH.
One day at a time, This too shall pass. Do less, enjoy more. Accept the things I cannot change. Reach out to others. Just some thoughts that help me when I'm stuck.
Wishing you all some Happy times in the midst of our pain,
This is my second Christmas without dh and I think it is worse than last year. He passed in October last year and I think I still had the insulation of new death around me but after a year of trying to deal with everything I am fully aware. I won't decorate - no one comes here and I sure don't want to put up stuff for me. I will take lunch Christmas day to the ALF where my sister is. I think at this time most of my small family will join us. We always had family here Christmas eve and I'll miss that this year. Last year my son & family invited me to their home on Christmas eve but this year they didn't extend that invitation. I'm thinking they believe that after a year has passed my life should pretty much be normal so I'll be fine. I'll never be fine again. I can be honest here I know. I'm just so tired of trying to be happy around other people when I feel so empty. I will not be finding anyone else as I'm much too old for that. I am so happy for those who do find someone who even somewhat fills that empty spot. Probably not completely but some anyway.
Dear Florence, I'm sorry for your great loss. This time of year makes it harder. I'm glad you are going to see your sister - she will be happy to see you, and you will make her day brighter, too. I hope you'll check back and let us know how you are. We really do care.
Florence..... .....Please don't think you're too old for anyone else. You can never tell what the future holds for you. .....As for myself, at 92 years, I'm having a great time just associating with older people like myself, Both male and female. I get myself out there where older people go and concentrate on bringing a little happiness to another lonely soul just by sharing stories and conversation. .....It gives me a feeling of selfworth, and that's what makes me happy. You can do the same Florence......... ...................With love......GeorgieBoy
Thank you Mary and GeorgieBoy you are both dear folks. I guess I should remember my husband's uncle who got married and bought a new car when he was 85. I always thought that was the height of optimism! He and his new wife had five years before he died suddenly of a heart attack. They seemed to really be enjoying their life when we would visit them.
I've told other residents of our retirement Inn that Christmas is cancelled this year. The plan had been for our older daughter and husband to fly here from Florida for the week, and our younger daughter, husband and 2 sons to drive up from Massachusetts. As many of you know we have had a major ice storm and power is out many places, including the house where we were all to stay. We are told it may not be until Friday that the power returns, so I have asked the plumber to drain the water and put the house to bed for the winter. Thus the younger daughter and family decided not to come (although the 2 parents may come up on Friday for the weekend). Then our older daughter said they were not coming because her husband, who went through major problems with throat cancer 15 years ago, was found to have a lesion on his kidney that may be cancer, so they are staying home to take care of that. I'll be having Christmas dinner here at the Inn with my sister. I plan to bring my wife over from Assisted Living for the dinner. I'll have to mail all the presents I got for the kids.
What would you do? My daughter lives 25 miles away. "Tradition" says go to her house for Christmas Eve meal, open gifts, play bingo. My grown granddaughter and my daughter constantly have "ins" and "outs" with each other, which is the situation today. My husband, Alan, who has ALZ., beginning of final stages, is peacefully taking a nap right now. Do I wake him, get him in the car, drive 25 miles to eat with drama or do I listen to my tired body and stay home with a meal I prepare?
Christmas dinner was better than I expected. My wife and I, plus my sister, joined another couple and their friends for a wonderful buffet of lobster stew, seafood newburg, and prime ribs. DW did not eat much, but seemed to enjoy herself. When we came back to my apartment I gave her the present I had for her - a book of the photos and poetry she made into a slide-tape show back in the mid 1960's. She seemed to enjoy it, and responded with recognition at some of the poems, including the one she wrote in high school. My younger daughter and her husband may come here for the weekend, but still no power in our house. I had the plumbers come on Tuesday to drain the water and put it to bed for the winter.
Found out that our older DD is going to have a baby!!!!! She is the one who this time last year was in Afghanistan with the army. DD and SIL are over the moon happy!! I and younger DD are so excited. In this month of such sadness, to have such joyful news just fills my heart. They are still early in the pregnancy and have not told anyone other than the grandparents. With the exception of younger DD. I am going to go nuts until I can talk about it. Please keep them in your prayers.
Great news - babies bring such happiness when they are truly wanted and anticipated by all the family. We had a little one at our Christmas this year the first baby in our family for more than 25 years. She was the center of attention you know. Praying for all to go well for your DD.