I feel very alone! My whole time is spent doing for Kevan. I don't mind and enjoy it but where do I fit into this dementia Christmas? Why are the tears back in full force again. One step forward one step back!!
I am having ups and downs. Jazzy, it is no better when they are gone. Because at that point all you have is yourself. And it is very lonely. An after dementia Christmas is very sad to.
All we can do is keep on keeping on. Lame I know, all I can offer. : (
Today is one of my Grandson's birthday, and I don't even know where he lives.
Sorry--I read the topic quickly and thought it said "what" are you doing as Christmas nears. But upon reflection, this covers both how and what I'm doing. Please forgive me if this is too much off topic.
The holidays last year nearly killed me, because people kept asking about our holiday plans. We haven't had any "holidays" in years, and every question just reminded me of how different our lives are from other people's lives, and all the losses that have been caused by dementia. I honestly didn't think I could live through another time like that.
This year I have a plan. From now until after the first of the year, I am working as hard as I can to go through things and purge and organize. I'm getting rid of old files, old clothes, and anything else I can. Before dementia came along, I used to be a very organized person. That's hard to believe now, because after downsizing and a year of health emergencies with DH, things are a mess. But I'm determined to get back to it. It would make my day-to-day life so much easier to live in an uncluttered, organized space. My Christmas present to myself is to get things back where I feel in control of the house again, and know where everything is. And since we live in a really cold, snowy part of the country, I'm planning to continue this for the months of January and February, when we usually hibernate anyway. I want to go through every drawer and box and shelf, even if it takes me until next Christmas.
Some of this is very hard to do, as it brings up memories and hopes and dreams I'd rather not deal with, but I keep reminding myself that when it's done, I'll never have to wade through the physical evidence of the sad memories again. It feels like clearing the decks for the other difficult things that are ahead of me in dealing with this disease.
How's that for a strange holiday plan? It keeps me busy so I don't think too much about Christmas, and it's doing something that will really help me in the coming year. Also, there's no tree to take down or decorations to put away after Christmas.
Jan K, That's a great holiday plan. I think I'll try it (on a smaller scale, though). It's a great time of year to get rid of heavy clothing, since people need warm clothes now.
In a way I'm lucky - I've always thought that Christmas is mostly for children. My husband and I never had a any children together, so we did not have those memories. Our holidays were usually spent with my family and that often seemed like an obligation. We did have some very nice Christmases together, though. One Christmas I had been working 12-hour days for weeks and did not even have time to unpack any decorations. I came home from the office exhausted about 9:00 one night and opened the garage door with my remote control. There, set up in the middle of the garage was a Christmas tree on a stand, already strung with lights. I laughed so hard. The memory of that surprise still makes me smile. That man really knew how to cheer me up. . . .
As for this year, I've really started to feel the physical effects of living with 8½ years of stress and sadness. When I walked into this experience I was essentially a young woman; now I'm old and tired in a way that others my age are not. I've noticed that recently it's been harder for me just to keep putting one foot in front of the other. So I'm going to deal with Christmas by not getting sentimental about it and by participating in it as little as possible. The last thing I need is to crank up expectations that are just going to drag me down. I'll have Christmas dinner with my husband, who still smiles when he sees me, and maybe spend some time at the Lodge. Hope to see you all there.
This was the first Christmas in a few years that I enjoyed buying gifts for the two grandkids we still see. I normally just send $20 to each and let then buy but this year I spent more and bought. Earlier in the month their mom and I talked of us coming up on Christmas. Yesterday I asked her plan (to double check) and they have plans to go to her pastor's house. I checked the weather to see which day to take the presents up but today was the only day without snow. Well, now they are having snow showers today and every day next week. So, I will mail the presents. There isn't much snow but I won't drive in any snow or ice. I seem to be more cautious as I age to not take chances with my car. We have had it for 13 years and can't afford another one.
If she carries through on her plans to move to Florida after graduating, then this would have been the last Christmas to spend with them. She wants to move to Florida cause she has found some 'parents' to adopt and in Florida she can work as a social worker without a master's degree. Washington requires one which is dumb since having one doesn't mean you are any better! Maybe Florida weather will suit her physical problems more. Although I can't imagine her being able to hold down a full time job. The last job she had she was always taking sick days, needing naps, etc. She supposedly has lupus (although test have been inconclusive), fibromyalgia, PMDD, osteochondroma and who knows what else.
So, I need to change my mindset back to how it has been the last few years. My upbeat attitude has now changed to a sadness I think mainly cause this would probably have been the last one to spend with the kids.
Today was the tea at the LTC. It was lovely. I went early and Kevan started to cry. He said "I'm sorry that I am causing you so much trouble." I immediately went out am had a PSW get yet the nurse to bring him an Ativan. I reassured him that he was no trouble. We had lunch then went to the tea. I took everyone to a quieter room to visit after the tea. He became very quiet so I said that's qit and sent him to bed. Now I am off to meet him for dinner with another son and our daughter. He told me this will not be possible anymore. So I met with them before they left and told them, no more big get togethers. Now I will tell the others as well. I am going to be glad when tonight is over. We will be having dinner at the residence on Christmas Day as well myrtle. Just to much. I am also purging files and craft boxes. Must be something we do as dementia caregivers.
Jazzy, It sounds like your big family is a lot to handle in addition to looking after Kevan's needs, which are so changeable. I don't think I could do that as gracefully as you do. One thing I find about having the holiday dinner at the residence is that everybody is in the same boat - struggling in one way or another but putting a pleasant face on it for the benefit of our spouses and each other.
Jazzy and Jan K, I just went upstairs to the guest room closet and in the space of 15 minutes, put aside a dozen very nice sports jackets that my husband will never wear. Like everything else, the more you think about it, the harder it seems but when you finally do it, it's not that bad at all. In the next few days, I'll tackle the suits, and then maybe take a break until after Christmas.
Iam finding it hard to come by any holiday cheer this year...i have been drained by hubby's 4 day stint in the hospital and the new changes brought about by it...nothing major just having his living area restricted to main level of the house so my living room in now adorned by hospital bed and commode...nothing like an in your face reminder of what your life has become...Christmas day also represents the 2 year anniversary of my fathers passing ( of all the days right? ) so my mom wants to spend it quietly at home so we had decided to have christmas dinner here christmas eve but now it turns out my daughter has to work on christmas eve...at this point i said we would have a dinner here the week following christmas so it just seems like the whole routine of christmas has been turned on its ear this year...bah humbug lol...I don't think hubby would know what christmas is now...I'm hopeful for a better christmas next year cuz its not looking great this year...I'd like just a nice quiet time at home I think to recharge my batteries...like Jan K I too was a very organized person prior to dementia...today I had a good look at my kitchen and my counters are now full of adult diapers, wipes, changing pads, bandages, polysporin, toothbrushes etc etc etc...sometimes you just gotta laugh at how ridiculously we live our lives!!! However all of you spend your holidays, I wish you all much peace and serenity...
I too am in the process of deciding if a holiday is worth the effort. I did force myself to decorate some and put up a new smaller tree and everything does look nice, but it hasn't had the effect on me I thought it would. I am just looking forward to it being over with and go on. He does not recognize the holidays this year either. His family are the only ones close, but they don't come or call very often as they might have to help with something. Going on 4 years without a break or help from anyone. Hubby was in geri-psych for 10 days for meds for aggression and is now home again. Doing better most of the time, but his physical decline is getting worse and I see new problems arising each day. He is getting words and sentences mixed up, constantly fiddles with his belt, undoing and fastening and telling me something is wrong with it. Can't figure out how to fasten a seat belt, puts on two pairs of underwear and tries to pull jeans over pajamas. Just doesn't realize he already has something on. Showers are now a huge cat fight, they can take up to 1 1/2 hours from start to finish. He has no attention span, so tv programs are out, and if I am watching he always turns it off or mutes it randomly. He doesn't want or can't do anything that he used to do for pleasure. Placement will probably come next year sometime, but until then all I can do is persevere and try to keep my health and body going.
This is the first holiday since his passing. It is hard but I am attempting to focus in my blessings instead of the losses. I did put up decorations and a small table tree. I am getting my mother who is 93 on Wednesday and we have our get together on Christmas Eve at my sons house. I will probably take my mother to my sisters house and she will take her home. I still prefer the quiet and being alone with my grief but I realize that in order to move on I need to go thru the motions for the sake of the grand children. I am having company the day after Christmas for a few days. His passing has changed so much just in the dynamics of my family. I just put one foot in front of the other and hope and pray that I will forge a new normal in the new year as I am tired of feeling sad.
I've been wanting to post something helpful here, and been kind of trying to collect my thoughts. Christmas 2013 was Larry's last, and while he was very wingy, he was still ambulatory with his walker and knew it was Christmas. The family came here on Christmas Eve (DD, s-i-l, three grands, cousin who is a Protestant pastor). I cooked supper, and we all ate kind of quickly, because Cousin had to go preach, and the rest of the family was also going over to her church. Then Larry and I were alone, and we just had the TV on and watched EWTN to see Midnight Mass in Rome (taped of course...time difference), and had a nice, quiet Christmas Eve. We had some small gifts to open the next morning--a calendar, a box of candy, etc. I remember sitting in the den with Mass on again (no way could we get him out of the house to actually attend church--those days were long gone), opening our gifts and kind of making it fun. "Oh, wow, look at this great box of candy! We're really doing well this year!" etc., etc. He was loopy, but could still get something out of it. So I have happy memories of that Christmas. I had put poinsettias around the house, the Nativity set, and a small, pre-decorated tabletop tree. So it probably took me 5 minutes, but I had decorated that year. Needless to say, the house was full of medical supplies, but I tried to keep most of that tidied away out of sight. That was his last Christmas, and thinking back, I am so grateful for those last, happy memories. I think we all have good memories of our little children's first Christmases...first tree, their reactions as they started to realize what it was all about, etc. Well, I have good memories of Larry's last Christmas. Good feelings.
Last year, Christmas 2014, was a little different, as he had only been gone three months and 23 days. I gave the little tabletop tree to my DD, as I couldn't bear to look at it. I did go to a carol concert at church (who cares), decorated the house and put up a real, four-foot tall Christmas tree (pretty, tree, but I cried the whole time I was trimming it), and of course sent out a few cards to the closest friends and relatives, and gave gifts to the immediate family. So I tried, but in all honesty, I was still too much of a wreck to get much out of it.
This year, the house is still not entirely put back together after having the whole interior painted, but I have the Nativity up, have big poinsettias artfully placed, have my Christmas lights on the front stoop, and have a string of Christmas lights on the headboard of my bed. I'll get a four-foot tree again, and put it up the day before Christmas Eve. I've sent a few cards and of course bought gifts for the kids and DD and s-i-l. (Ex s-i-l, but he still gets something.) I made three recipes of cookie dough last night and will be baking over the next couple of days...something I have not felt like doing for the past several years. I'm having trouble getting rid of "stuff" as I promised myself to do after the painting...just feels like I'm getting rid of part of my life...but I will be gentle with myself about it. If I can't actually discard or donate, some things may be boxed up neatly while I think about it some more. My mood is not great, but not terrible either.
So...my take away points, I guess, are: Try to create some happy memories, even if you are still stuck in heavy, miserable caregiving mode. And if you are in dark, gray, bereavement mode, be gentle with yourself, but try to do a little something that will give you some peace and comfort.
Now that we're passed Christmas, I must say I'm glad that part is over! It was not a good one, as per my posts under December 2015, & I'm happy to put it behind me. I've tried very hard to concentrate on the reason we celebrate Christmas, but even that hasn't been easy for me. New Years won't be any big deal...we'll be in bed before midnight! I'll just have our son over New Year's Day for dinner & that will be it.
It's hard to grab hold of the fact that life has changed so much...I know it always does, can't remain the same forever, but with small everyday changes, we just roll with it. The dramatic, unpleasant changes are much more difficult to take. Yet we do, we really have no choice. The year 2016 is still a mystery, who knows what will unfold. Try to take it as it comes, one step at a time & all those cliches!
I'm just tired, emotionally worn out...think I'll do some reading this week after I make several phone calls. At least, that's the plan...you know how those go!
Mim, I think reading is the thing that gets many of us through it. My 92-year-old sister-in-law in Virginia, who is caring for her 94-year-old demented husband at home, just reads and reads and reads. She says it is the only thing that keeps her going. (Their daughter is trying to help set up some care, but the trouble is that s-i-l has plenty of money but flatly refuses to pay for anything.) The good thing about a book is that it is easy to pick up and put down as you go through the day.