Well, DH is out with his son, I don't know anyone here call to go for coffee, I cleaned out the spice cabinet of all the old ones, planted some cutting I had in a jar, put supper on. I think I have no choice but to move to the small city when he goes into LTC as I will have more activities to get involved. I dread living alone with no one to just be there. In this town they role up the sidewalks early and Sundays are so quiet. It's so hard to think of what my life will be like now as we have been so active and so spontaneous. If we wanted to go we just up and went. Long trips or just day trips. Lots of family function but now he just can't handle all the hustle and bustle. I enjoy this time when he is gone out but I sure wish the family would realize that when one of them takes him out maybe one of them could come and do something with me. It gets pretty lonesome. I have mentioned it to them but they seem to think I need to just rest. Or maybe they just don't think. So sad! It is so difficult to just be sitting and watching your partner disappear. We are in limbo. I don't want to watch this but I will be here with him to the end no matter how long it takes, but I sure hate this disease.
This has been such a difficult road for you and my heart does ache. Everyone has abandoned us, so we have no outlets. Perhaps when a family member takes him out you could say you'd love to have company while he's out...it will give you a chance to visit with people and the opportunity to have a "normal" conversation. If they tell you you need the rest, just tell them a face to face visit would revive your spirit, soul and body so much more! It's worth a try.
Reading your comment made me think, "did we really ever live like that"? Especially at this time of year and especially on Sunday's, we might get in the car and just go. Maybe a couple of hours north to look for changing fall color, maybe the same distance south to a bird sanctuary. Stopping wherever if we saw a restaurant that appealed.
Maybe I hallucinated it all...It can be so lonesome in an Alz/dementia marriage.
Jazzy - I really can feel for you. OK I've done my time can I be let out now.
I am the opposite...please take him and leave me alone for a while. I want to be able to putter around my cabin without the supervisor, that's not how you do it, you can't do it that way, you're wrong, what are you doing, why are you doing that....on and on.
Nope I'm not a company in my home person. But on the bright side the little school here...K - 7 has 25 kids I think, if even that much....had a chili cook off and neighbour meet up. Because it is so small here I could take hubby, they all know him and understand what is going on. I was able to let him loose and people talked to him and he could wander around and be safe. A good couple of hours.
Oh no I don't want them to come and visit, take me out. I went out to dinner alone when he was in respite the first and I was so upset that I haven't done that again. I was all alone with couples our age sitting around me laughing and talking to each other and it was just to much. My friend who has lost her hubby to COPD a few years ago. Said I should have warned you about that. I would like to be taken out and just sit and have a nice conversation about anything but dementia. I don't even mind paying!! Desperate aren't I? When he is at ADP or respite I don't care to see anyone for a time. I just want to veg and sleep. I knit quite a bit now After years of not touching my needle or hook. I'm making gifts for some very good support ladies, to say that you and it keeps my mind from going buzzy. I have just realized that the big lump in my throat and the indigestion go away while he is gone and return in minutes after he is back. Scary! I guess his moving to LTC can't come to soon. You were not hallucinating. All of us really did that many moons ago. Just memories now.
Jazzy, I know exactly how you are feeling! . In my hours of respite this summer, I very rarely had anything to do that involved other people - usually I went out by myself. Not because I wanted to, but because there was no one to go with me to do anything interesting. Unless I made the approach to a friend to say - "I have some time on Wednesday, would you like to go to ______ with me?" We do all the rational thinking for ourselves, for our LO's and it appears we need to do it for our friends as well, as they can't think clearly enough to say -" I bet Bonnie would like to get out of the house and do something different!" At the moment, the only socializing I get is at church on Sunday! And now that the cooler weather is here, my options for doing something on my own during my respite are more limited, because I won't be able to take a book and go sit someplace AWAY and read! Its a lonely, boring life!
Hi jazzy, and everyone else traveling on this trail without a roadmap or GPS. Clearly we're all going through pretty much the same scenario, although some of us have better support systems than others. Some can afford more help and have more time to themselves. Ultimately though, unless our spouse is in a LTC facility, we can't really move on. I enjoy many activities, but mostly what I enjoy is being out of the house and away from the woman I've loved (mostly) for over 40 years. Sometimes I think I hate her, but what I hate is what is happening to her, and obviously to me. Jazzy, you have to be proactive. Don't wait for people to call you. Unless you tell them you don't need "rest" nothing will change. Tell them you need some company, and you don't need rest, you need some fun.
My heart breaks for you because I can identify with all you are saying. Some days are more difficult than others and I especially think that weekends are the worst as those were always the days as a couple we spent together going to the movies, dinner or being with other "couple" friends. These weekends as a couple now no longer exist. May tomorrow bring you a better day.
Jazzy, I am sorry ((hugs)) It is lonesome and that limbo feeling, that last long after even placement. I do believe it will last until "death do us part". Even then I imagine the loneliness still lingers... It is never easy to lose the love of ones life.
Perhaps next time someone makes plans to take your DH out you could ask someone in the family if they would like to go out with you. Again I wish we lived in the gated community, I would love to take you out for a cup of coffee (or a rum and coke :)
My dh isn't that far along, he can still stay alone during the day, but I have noticed he is getting lonely, since his lic. was revoked. I am having to cut back on what I do. I have decided when he goes to LTC, I will join groups again. I crochet, quilt, bead and play cards. Josie's Guy is right call and ask. Someone else maybe just as lonely and would enjoy your company. You deserve a life, go for it. Love Bonnie
No one realizes we are there. Everything revolves around AD. And so it should. But it is a lonely life. If I had to do it over, nothing would change. I gave my all in the name of true love. I just miss being loved. Love and hugs to you. You are living our lives. Sorry, Jazzy. Carol
I took him to respite this morning and he told me to leave. I felt like a cat being kicked out for the night. He is #1on the list now so it won't be much longer.
Jazzy, enjoy your respite. I would come down and visit with you if I could! Lets hope that his placement comes soon - I think you both would be a lot happier.
I'm sorry for your hurting. Do something for yourself, even if it's just a nice hot soak in the tub, or buy yourself a present. I like to buy fresh flowers for the table. I get carnations they last the longest. We are thinking of you Jazzy. Bonnie
Jazzy - Is there something you would like to learn that you can take a distance learning course? My best friend and I are going prospecting for gold, her hubby was an engineer in gold mines all over the world till he passed, and the stuff I have to learn, getting a miner license, geology, finding and purchasing claims, etc... It's keeping me busy and my mind working on something else other than always AD. It should be a fun hobby and seeing as I live in gold country maybe we will find gold....what I do know is we will have a lot of fun and exercise.
I received a call last night and ended up back at his respite LTC. They had a bed for him and he accepted. Tomorrow he will move from the respite bed to his new room and it has a lovely view of the river. He is quite happy with it. He has decided not to come home to pack so I did it for him and he will let me know if there is anything else he needs. This is so strange.
This is bittersweet for you, I'm sure. At least you know he will be taken care of. He might like to see you pop in to see how he is getting along. There is so much of this we don't understand. I hope you will slowly rebuild your life. Like Joan says, baby steps. I'm praying for you. Bonnie
Jazzy, fall in love with yourself all over again! Buy yourself flowers and take yourself to your favorite restaurant. You really don't need anyone to enjoy the things you like. If you feel awkward, that will pass. If people stare, let 'em. You were tough enough to get through a lot of this alone. You can do it. AND now you can buy yourself little presents from him and get exactly what you want.
Hey Jazzy if your still out there email me.....email on my profile. Have a couple of LTC payment questions to ask you plus I don't want to lose contact with you.
bdq (bonnie) - could you as well?
Pam - email me...I don't want say where exactly I live on this site.
DH is has been in LTC for 8 weeks now and causing quite a stir. He has had a number of out bursts at staff who had no idea how to talk to him and he is now an advocate for change and up dating care. He has no problem marching down to the admin office and letting them know how it should be done. His memory is really deteriorating and so if the staff don't wear their name tags he gets upset and frightened that they may not be staff but someone off the street trying to tell him what to do. He loves it there and no more night errors or bad dreams except when I brought him home last week end to do some of the things I can't do to prepare for my move. I will be moving on Dec 01 to the city he is in and just ten minutes away so that will help my stress as the travelling was just to much. I went to he Dr. Two weeks ago and they just about had a heart attack. They said I was very ill and run down and put me on antibiotics and said rest. I did and now I am much better. I have started taking a course at the senior centre where I will be moving to and it is called" Tai Chi chih" and it is really great for me. I just love it and it has started to help me relax and rejuvenate my body and soul. I haven't met anyone to maybe friends with yet but that will come, I hope. DH is very sucky and wants to be cuddled and hugged now. That get away from me is gone for now and so it is not so difficult to be with him. I had to "slap" LOL, put a worker in place yesterday because his teasing was just to harsh. He didn't like my stepping in but to bad that's my job. DH just slunk into his chair because the teasing was to much, so I said" that's enough" he said " I was just teasing" I told him it was to harsh. He is a good worker and very caring but he does go over board with his teasing and DH either explodes at him or slinks away. Neither are good. I haven't been posting for sometime now as I just had to back away for a while and regroup, but I have been reading and learning from all of you.
Jazzy Its so good to hear from you! I am glad you are looking after yourself and finding some fun things to do in the city.
I have a problem with a worker doing any "teasing" at all- its unprofessional, and it is so easy for teasing to get out of hand, which it obviously did this time. Maybe it is something that I am just overly sensitive to, since I was teased relentlessly by my siblings when I was a child. How is a worker going to know how a resident with dementia is going to react?
We had a teasing incident last week (I do not know if it was another resident or their aide) and L talked with Exec Dir I I wrote to the Exec Dir. At the very least the resident's aide witnessed it, but I think it is so stupid to not realize that all of the residents are vulnerable people and teasing is a bad idea. The teasing triggered L's memories of being bullied when she was young (I do not know how much of these memories are real or confabulations but that isn't important).
WOW!!!!! Do I ever feel good!!!! I was concerned that I had jumped to fast and I was not sure of my role in what was happening. I just spoke without even thinking and told the PSW ( Personal Support Worker) what for. I don't think he liked my stepping up but tough??? When DH first went there I was concerned about this PSW teasing him but I was not sure how far I could go but DH's cousin is a retired Geriatric nurse and when I told her about it she just about came through the phone at me and made it very clear that this is not acceptable and I was to speak up. She reminded me that I am his advocat and that it is my job to protect him from this and anything else I am concerned about. So,,, I will just go to it. the Admi staff are really supportive and listen and move quickly to stop anything out of place or to try and get the best for their residents. They continually remind the residents and Family that this is their home and if they don't like something or do like it then speak up.
Jazzy, thanks for relaying this story. Although I haven't seen this kind of behavior at my DH's ALF, it reminds me that I should always be aware of things going on in the facility and be alert for any inappropriate behavior. Hope your DH is doing well and happy you have found a new place close to him.
Everything has settled down now. The PSW is very friendly with DH but no more arch teasing. DH told me tonight that sometimes when he says hello to the staff they will say" I've got my name tag on" he has brought about some pretty simple changes for the good. He said he is glad the teasing has stopped as it really caused him stress. I told him that he can tell me and I will take care of it. He is now pretty sure I will not let him be teased and that I will back him on all his problems. It is very good there now, I guess they just needed to be reminded of their roll there.
Amber, I just resent the email - I don't know what happened to the first one! It was dated the 18th.
Jazzy, I am very happy to hear that the teasing has stopped, and that things have settled down for your DH. I haven't had a lot to say lately, but I have been lurking and keeping up with what others are writing. I haven't gone anywhere :-)
bdq I was concerned that you may be having difficulties and were not able to post. Good to hear your alright.I was able to get email to Amber with the yahoo.ca. I forgot that living in Canada we use the .ca not .com Hope you get I touch as it's nice to get an email from a friend in the same situation.
Jazzy and Charlotte - I did double check the email address, including the .ca. Its possible that it ended up in Amber's Junk Mail box and then got deleted.
Amber, if you don't have the email today, try sending me one. We will overcome this! :-)