Tried to put up Christmas decorations this morning. Christmas was always Charlie's favorite holiday and I though maybe it would get some reaction from him. Getting him dressed and fed was a chore in itself as he has gotten so much worse in the last few day. He can barely walk but still tries to and I have to follow him everywhere. Thought maybe he would sit and watch me put up the decorations and enjoy it. No luck. He kept getting up and wandering around and then couldn't even sit down by himself. Just stood and looked at the furniture like he didn't know what it was for. After the 5th time of following him to the bath room and helping him with his clothes,so that he could sit on the toilet and do nothing and then wouldn't sit back down when we returned to the living room, I gave up. Ripped down what few decoration I had put up, threw them in the middle of the floor and stomped on them. Told him I was going to take them out and burn them. Have been unable to stop crying since then and don't even know where to turn. I have never called the Alzheimer's help line. Will they talk to me even though he as FTD and not Alzheimer's? I feel like I am going to explode or have a heart attack or both if I don't do something.
I am so sorry that you are going through this crisis. Go ahead and call the Alzheimer's help line. If they aren't able to offer advice, I would hope they can refer you to a place that deals with FTD issues.
I am so sorry you are going through this terrible time. I believe it is the "changes" that affect them. Changes in furniture, adding stuff (decorations) to a room, the actual physical process of someone decorating. Christmas is my holiday and I have a victorian house that I love to decorate Always had 7 trees up plus all the other decorations. He always loved to help me and enjoyed it. Not so the last 2 years. Got rid of the large trees, and just use one table-top now, plus a few other things. But after I put the one table-top up recently - he said "now that's done and that's enough, we don't want to over-do it!" Well, it wasn't enough- and I did manage to get a few more things out after he goes to bed!
I have been doing a whole series on Holiday Caregiver Tips, and one of them is about decorations. Log onto the home page - www.thealzheimerspouse.com- and click on the Holiday Tip section on the left hand side. Tip #3 discusses decorations and the reasons for agitation in the midst of holiday decorating. I would suggest reading the whole section, as it is informative, and gives reasons for having to change your plans and perspectives for the holidays when dealing with Alzheimer's Disease.
This week, I recorded a segment on "Nurturing the Nurturers" Internet Radio show about changing our expectations during the holidays. I'll let everyone know when it will be available for podcast. I think it's on the 22nd, but I'm not sure.
ehamilton, sure, the Alz Assoc hotline will talk with you! Many of the members on their discussion forums either have, or are caregivers for, FTD. Dementia is dementia. Plus, as far as I can see, those who care for FTD or Lewy body patients need the Association hotline more than the rest of us.
I'm so very sorry, what a miserable time you've been having.
Oh, you know, this past week and 1/2, we have been wanting to go home. and pointing out the fact that we don't live here all the time, only in the summer. So I pointed out that there are christmas decorations up. I wonder if that's what's got him thinking we are not actually home. It's possible I guess.
I can't remember if Joan ever posted a piece from Alz News, originally printed in the Houston Chronicle (full article link below):
Decorations, Crowds May Spur Seniors with Dementia to Roam
For those with Alzheimer's and other forms of dementia, holiday frenzy and changes in routine can prove disruptive. According to the Alzheimer's Association, the weeks around Thanksgiving and Christmas bring a 10 percent increase in calls to its national, 24-hour hot line about people who have wandered away.
"My suspicion is that the holidays cause a lot of chaos in families," said social worker Michelle Sonnier, an Alzheimer's Association family service coordinator. "People are running about shopping and attending parties. In this season, we really get absorbed in what we are doing and not prepared for our loved one who has Alzheimer's."
During the holidays, dementia patients may be prone to wander because of travel to unfamiliar places or the absence of their usual caregivers.
Holiday decor may make homes unrecognizable.
Some may become confused amid festive activities or crowds of people.
Sonnier offers these tips to prevent loved ones with dementia from wandering:
* Be prepared. Recognize that wandering is part of the progression of Alzheimer's and other forms of dementia. * Don't leave patients home alone. * Keep doors locked. Attach a lock on the lower part of the door. The patient will typically not think to look below eye level. * Trick the eye: Paint doorknobs the same color as walls. "Their perception is different than ours. They won't be able to grasp for a door knob," Sonnier says. * Set your home alarm to sound when doors are opened. * Take the person's keys, so he can't drive off. * If confiscating keys isn't an option, disable the car battery or flatten tires.
Full story: http://www.chron.com/disp/story.mpl/health/6154451.html
I'm really sorry you have this to deal with. My DH just sits in a chair. He doesn't read much at all. Watches TV but can't keep track of what's going on. He doesn't help with anything unless I ask him--like drying a dish or putting something away or taking out the garbage. But, then I have to explain everything I'm talking about. Drives me nuts but I do it because I want to keep him moving and active as much as possible.
He doesn't care what I do decorating wise. If I ask him how it looks he says "nice."
I think we should all take a cleansing breath and exhale slowly. Sit down and drink a cup of tea and pet the cat. I know that's what I'm going to do.
Thank you all so much. Crisis over for the moment. After I threw the decorations in the floor, stomped them and threatened to take them out and burned them, I sat down and had a good cry and started this discussion. Then I went and picked up the decorations, got rid of most of them (but didn't burn them) and sat out a few knick knacks and put up the tree. He sat quietly and watched and dozed. I proceeded to explain to him in a calm voice that the children and grandchildren would be coming to visit for Christmas and I would no allow him to ruin it for me. The decorations at not what we used to have but at least there is a little look of Christmas and it will have to do. The saddest part of all is that it used to be his very favorite holiday and I know that this is probably the last Christmas that will even resemble anything like we had in the past. I wanted to do it for him I thought, but most likely I wanted to do it for me. I just wanted him to understand and he didn't.
The Alzheimer's Association takes care of all dementias. They won't even ask which kind unless the help you need means they need to know. They are just plain wonderful. My husband doesn't have Alzheimer's. He has an Event Driven form of Vascular Dementia.
I'm not putting up any decorations this year except I'll put out the two stockings my daughter put together for the two of us on Christmas Eve once he goes to bed, so they will be there in the morning. I'm buying minimum presents. My daughter's family will come to visit us late on Christmas Day and will stay either a day or two depending on how it all goes. That way everyone gets a little of what we want from the holiday, and if it doesn't work out, it will all be OK anyway. No one will lose out totally, including me. I'm the one who needed the stocking. <grin>
The stockings are already filled. My daughter filled both of them, tied them up into bags, and "hid" them in a drawer. She also bought and wrapped a present from him to me (told him about it, but who knows if he remembers) for Christmas Day.
As for what is in them, don't have a clue and don't want one. <grin> I don't know why I love the small, silly gifts in stockings, but I really do. I think it is because I never had one as a child or until quite recently as an adult, but always did one for my daughter. When she was little and got TOO EXCITED she was allowed to open up her stocking no matter how early it was. I'd hang it on her bedpost since we didn't have a mantle back then.
I have the house decorated, and he seems happy about it. Keeps commenting on how nice it looks. But the fact still remains, he seems much more confused than usual. I guess these drugs don't work forever. he's been on Arecept, and now is on Exelon. Namenda, made him more confused. All in all, it is one lousy disease.
Well, this is the first Christmas that I am seeing the effects of AD. She has always been one to do things ahead of time, and be very organized. She usually buys most Christmas presents throughout the year and has them stacked away in the closet. This year the closet is empty! In fact, when I suggest that we need to get some things, she always seems to have an excuse. She just has no initiative to start doing things. Eg. “We really don’t need to put up any decorations this year.” This is OK with me, and we are going to a daughter’s for Christmas, so maybe nobody will notice that we have turned into a scrooge! She is also one who has Christmas cards ready to mail right after Thanksgiving. This year she talked about it, but nothing got done until I did it.
The one thing that she likes to do, and this is a real blessing, is that she knits. She has been part of a volunteer group who has been knitting prayer shawls for the local hospital. The chaplain gives them to those who need them. The yarn is provided, and the knitting is very simple, so she sits and knits for hours. In fact, when she goes to the hospital to turn in the shawls, she always picks up plenty of yarn. I think she has enough yarn around here to keep her busy all winter.
I guess I can understand her reluctance to do anything that doesn’t feel comfortable, if she might not remember how to do it. One other curious thing, she has always “enjoyed” doing laundry (at least she is right there to do it as soon as the clothes basket gets much in it). Well, she now does very little around the house, but she still does the laundry. Halleluiah!
As I write this summary of her condition, I see that I am really fortunate compared to what many of you are going through. Lets hope that we stay at this stage “forever”. I know that is unreasonable to expect, but I live one day at a time, and today is a good day.
Last year, the official Christmas tree selecter and cutter did nothing but complain how cold he was, how tired, how much his knees hurt, and in general was just miserable. We (the teens and I) were so worried about him too, either tripping over the already cut tree stumps or slipping (it was wet, and flurrying). Then right before Christmas he was horrible, delusional, at times angry, demanding.
This year, I could feel it - a repeat of last year coming on and I refused to let the family be as traumatized over Christmas again. This will be a first Christmas with my Granddaughter too.
I got things from our storage unit and started putting lights up, and other decorations....with my two teens helping.....before Thanksgiving. Never did decorating that early before. DH just sat and watched.
Kids and I devised a plan so DH feelings wouldn't be hurt. Had a caregiver yesterday, did some legit errands with the kids, then drove out of town to our favorite Christmas tree farm and the teens picked out a great tree. Got home with it, but it was dark so thought we'd bring the tree down from the upper driveway in the daylight. Well, it snowed, and the tree is still dripping a tiny bit, but we got it in the house and all set up in the stand. Will decorate it over the next couple of days. We told DH the kids got to choose one when we went to the college book store.....that the kids got a coupon to go pick one out in the parking lot. He isn't thinking anything about it at all. "Oh, yes, that's a nice tree" he says. He isn't even talking about, or thinking of "Christmas" at all.
Like my sister said to me today, the thing about the tree....... I shouldn't feel guilty. Saddened yes- that he can't participate, nor has the same enthusiasm about the holidays that he once did. But what it comes to is making adjustments....you know, with those little fiblets.
The tree smells so good. Tonight or tomorrow we will begin to decorate the tree. DH has always tended to buy an oversize tree, and so over-decorate it that everyone dreaded the day we had to take ornaments off and package them for storage. DIL asked if my granddaughter, Natalie could put her own ornament on the tree. Oh, of course! Their tradition is to get her a special ornament for each year. This will be her 3rd Christmas.
New Realm ........ having your little grand-daughter is such a blessing ..... focus all good things about Christmas on her, enjoy her youth and excitement ..... maybe you and she could make cookies together ....... little ones really do keep us all young ourselves ..... you are blessed !
Year before last was our last live Christmas tree. He overwatered it and soaked the floor several times before we realized it. Last year my son and 20 year old grandson strung the outdoor lights the day after Thanksgiving before they went home to Houston, so my husband wouldn't try to get on the roof. HE DID ANYWAY, to take them down the day after they left! I managed to stop him after he took one strand on the side of the house off! The front remained lit for the holidays! I bought an artificial tree the day after Thanksgiving last year that already had lights on it and was assembled in three steps. My daughter distracted my husband in another room while I put it together. We deocorated it after he went to bed. He rearranged some of the ornaments over the next few days. Only broke one.
This year I'm not getting out my Christmas Village nor the expensive ornaments for the tree. We are using regular balls and the felt ornaments the children and I made in the 1970s that are still their favorite ornaments (and unbreakable) (when they left home they each asked for some to put on their first trees, and I gave them each some). I tried to put out a few items yesterday on the tables, desk, etc. each time he left the room. He keeps looking at the plastic tubs, but so far has left them alone. I've just done a few pieces each day, trying to keep from triggering the problems some of you have had! So far, so good!
We must all try to get through the holidays with as much joy and as less problems as we can. These memories will remain with us after they are gone. It is heartbreaking though - especially when they love it so much!