Today was a good day. My friend came to stay with dh for 4 hours and I just got out of the house BY MYSELF for 4 hours. No schedule, no plans just got in the car and drove. Browsed at the Mall and found the first garage sale of the season here. I bought a pair of mini cowboy boots for my daughter to add to her decorating collection.
good for you imohr! my fridays 4hrs are like this. no plans just get in the car and start planning! usually the mall and wind up at grocery store..buying tasty treats for DH and me..hah. today my aide got lost and didnt show up -i took DH with me and although he was very good its not the same..glad you enjoyed it. divvi
I think it is great that you both were able to get out. My question is how do you get your husband to agree to have someone other than you to stay with him. My husband would never agree.
kadee -as seen on this board so many times, there are lots of things they 'wont agree to". like you many of us had to basically threaten to leave or yes - even like someone else said- you use the despicable 'nursing home' threat. in my case it really wasnt a threat -either he conforms to how i need to organize the care at home or i wont be able to do it for long! how else can we get thru to them that our sanity is on the line if we care for them constantly 24/7 with no breaks? like the driving issues, that is so very hard, you just have to say enough is enough and this is how its going to be if i am to continue to care for you here at home. usually if theres any reason at all, and think you mean it, then they may come around to your thinking. if not, i would hire someone, and allow them to get acquainted. and i would not accept "no"..eventually they do get accustomed to new persons-remember you are the caregiver and need some respite or else. divvi
Kadee -divvi said it well. I DON'T ASK, I tell him. He would never say ok or go ahead. I have a lady clean for me usually 4 hours every other week or so. She entertains him very well and that is good. They watch TV some, she shows him things on the computer and they just talk. She tells me some of the things he tells her. She has been coming for 3 years, first for my Mom then continuing with both of them and now just him. I am very fortunate to have such a caring person who truly loved them both and is very attached to older people. Something you don't find too often unless they are working for Hospice.etc.
Even with him knowing her forever he still isn't overjoyed with the situation. The first few months after my Mom died, when I would leave he would throw a wholly fit. Threatening to leave, pouting etc. My lady took me aside and said she was worried about me and she thought I should lock up the knives. The worse times were over after the third time. Gradually he accepted pretty much and it has been 9 months since my Mom died. I do a couple of things that work well with me. Bribery. Remember the kids? My daughter goes by McDonalds and brings breakfast to him and his favorite vanilla iced coffee. I usually bring him home lunch he likes and/or fresh donuts. (whatever they really like). Like Divvi, I do not accept "no". I just tell him the way it is and going to be and he better learn to like it because I had to get out by myself some on orders from the Doctor.
Mine didn't like it at first when I had someone coming in one morning a week, but that person was very calm and I think he wasn't positive that she wasn't me. She dropped out, though, and the next person does not look like me, can't be taken for me under any circumstances! And he doesn't really like her. BUT she's learned to stay out of his way, that he really isn't interested in her chatter (this took awhile) AND SHE DOES LIGHT HOUSEKEEPING. Since I have a wonky knee, I use that as my excuse not to clean often, and I use her willingness to do the housekeeping as the reason I really want her to stay. He's willing to accept this and I haven't heard major complaints for the last couple of months.
Always remember the Giant Toddler. You do not ask toddlers what they want. You tell them what they're getting.
thanks, imohr, didnt want to come across as that bossy but yes i am! haha..no is not an option in our house anymore, esp bathtime..:) and yes bribery ( alot of this goes on here) donuts. chocolate.shakes.those orange slice candy (fav:) well while i am out, constantly thinking of something that will lite up his eyes when i get home..lately its been the tabloid mags!!! haha.. he spends hrs flipping thru and talking to the people in them..awww..esp the scantily clad actresses ..hehee.. your life will change dramatically when NO IS NOT AN OPTION!! i want everyone to have a few hrs repsite. no is not an option for you any longer -hear??????? get with it! divvi..
briegull, and he reads them over and over and over...i say 2 days later, have you seen these new tabloids.? tell me what going on! and over and over...haha. just great! i have fun just listening to his conversations...divvi
Received some GREAT news yesterday ....... I got a phone call advising my husband has been accepted, one day a week (5 hrs) into the Day Care Program I'd applied for, for him, last November. I'm giddy with excitement 'cuz this is the first respite I've had in 6 years !
THANKS divvi ! ......... not sure how or what I'll do with the free time - I'm so used to *us* going, doing, getting, seeing everything together - it will be very strange to have some time on my own ..... not sure I'm gonna like it 100% but I know its necessary. What I'm really pleased about is the fact that my husband will finally have someone else to talk to - as little as he talks:( - and something else to see and do ....... I'm just so pleased for him as its respite for him as well as me.
Had an interesting day yesterday. Took DW to day care at 9:00AM, then went shopping for food, then back home to pay bills, etc. I usually pick her up around 1 or 2 PM, but yesterday all clients at the day care were being taken to the planetarium for a show, not getting back until 4:30PM. I must admit I felt sort of lost - nothing particular to do except read the posts here and read a book. When DW got back from the trip to the planetarium, she remember NONE of it!!!!! And she has always had a special interest in astronomy. It's really sad to watch this deterioration in someone who was so vital, active, and interested in everything.
divvi, that you for the "no is not an option." I've already started a "this is a shower day" thing and no is already not an option for that. But at this point he isn't really fighting me on that one. But you are right. Some things are not an option or we just can't continue to keep them at home with us.
Marsh, I know what you mean. Today my husband seemed to be in a rational, good mood, so I asked him if he remembered when he first felt confused. He went off on a long tale that made no sense whatsoever. Sigh!
I don't think that NO is a magicc word for us. Carol actually remembers it more that anything else and it gets her very upset and she will rant and rave for a long time. To her it is a degrading word because others use it when she is doing something wrong and we3 say NO. Don't do that! NO, not that!. Maybe woman are different but she still has some pride in herself, what little she still has. I usually pick all her clothes every day but sometimes, she just seems to feel a strong urge to not accept what I select. She is still trying to exert herself but does not really know anything to stand up for. It is sad. I find that my main motto with Carol is " Keep her happy!!!!!!" Anytime I try to take a strong stand on something, it usually makes her mad at me and I try very hard not to make her mad. If I go somewhere and convince her that is necessary and will be OK, she agrees but by the time I get back, she is furious and is unpleasant for several hours. I have a helper for 6 hrs/3days /wk. Her main job is to "keep Carol happy" Secondly is to do some lignt house keeping. I just try to stay away from anything bossy or things get real unhappy and that is a no-no. Then later, she cries andasks me why I am so mean. She calls me a devil, etc. I am a sissy and just try to keep things HAPPY!!!!!! Should I be tougher?
billie - whatever works for you. I seldom have to do a NO at this point. No he can't drive was for a while. No he can't plant the garden yet. That is the current every day desire. Going to be a long spring. Hopefully next week we can plant some cold weather spring crops. No, he can't go with me on my 4 hours off. Dr. wants me to get out on my own. I am trying to keep this in place so it won't be so traumatic later on. Same with my light cleaning lady and her keeping him happy.
Every day or so he comes up with a demand I have to say NO to. This week it is his truck he decided we should go ahead and sell. Talked to a friend who is a used car dealer and he offered me $11,000 for it straight out, said he would put $11,900 for it on his lot. DH says we are going to ask $13,900 for it and I advertised it and haven't got a call. This week, he says he wants $15,900 for it. I told him NO. It could just sit in the garage and depreciate because I was not going to price it that much. (Reason button gone) Think maybe he doesn't really want his truck to go?
Bille, i too believe if you are happy with the arrangement then go with the flow. the trick is are YOU happy tippytoeing around and accomodating every move and idea just to keep her 'happy'?? i hate to say it but there is a phase where my DH was not happy about anything! nothing, made him content. it was hell. whishywashing around my every need to way of being just to keep the peace. it drove ME mad. if the caretaker isnt in a good frame of mind mentally then caregiving is going to be in turmoil. giving in to their every need may work for some, but i for one would not accept that now. i did that for yrs and made my own life miserable. today there are many things my DH still rejects and adamantly refuses to do. too bad, he is treated with respect and dignity but if it crosses my own self dignity and how i feel living in my own house then the rules change. you have to find a happy medium where both of you have a meaningful working relationship that accomodates the neediness of both parties. not just them. that is not being realistic or fair to yourself. at least this is how i see it. divvi
On certain things, I make it clear--This is how it is. It has to be this way. You don't have to like it. Neither do I. But, this is how it is. He has to have a P(ersonal) (C)are A(ttendant) go with him on the GoBus. He cannot go alone. He cannot drive. He has no license. He cannot get one. We have nol vehicle.
On other things I work with a lot of requesting, redirecting, suggesting... NOT telling, ordering. And seldom say "NO!!" Some things aren't worth facing down. Just sigh and move on.
Right now we're having a "thing" because the man with the hearing loss (DH) can "hear the TV in the living room and it keeps him awake when it's set on 7 and his room door is closed. He goes to bed at 6:30. My recliner is 5 ft from the TV and directly across from a furnace register. I also have a hearing loss and when the furnace comes on, I can barely hear the TV. And then he gets up at 11:30 and wants to know the weather report. I'm looking into the ampliifiers discussed on another thread, but until then, we're going 'round on this because it's something that can't go all hios way. I live here too.
We are constantly adjuasting to keep a "happy medium" around here. It is truly a case of picking your battles, because not everything is a big deal.
carosi said: "On other things I work with a lot of requesting, redirecting, suggesting... NOT telling, ordering. And seldom say "NO!!" Some things aren't worth facing down. Just sigh and move on." That is exactly what I try to do bit I'm a dumb member of the male race and the father/husband role is well entrenched. But i have realized that being confrontational is harder on me than making changes in my needss. I do miss sports events but she always wants to be with me and will not stay put. She gets up every few minutes, moseys around the house, talks about something I can not undersltand. Even if I pay CLOSE attention. My hearing aids do not interpret what she says!!!!! Used to have troub le with the bath but one of you said to go ahead, draw the warm water, put in bubble bath. She sometime resist but I persist, very calmly (well----) until she gets in to the tub. I have rubber mat is bottom, Handle bars to hopefully prevernt a fall. I do persist and do not back off. With her clothes, I sometimes back off and let her wear what she wants to which is usually OK but realize it is just her way of trying to do lwhat whe has done all her life.
I am Happy some of the time but this 24/7 job probably does not include the that word for the caregiver. I have been doing this for 10 years and in #6 going for #7. Sometimes I just find it easier to be a gentleman do things the way that will keep her happier than if I be bossy or pushy. I would love to have my life the way I had dreamed of for retirement but it did not happen. So-----I think I am probabloy taking the "least avenue of resistant." Certainly, I have handled the driving problem for several years with great restraint even though she has griped, cried, pouted, and even hollered and screamed. The worst episode we continue to have is her persistant accusation of me "you never told me!!!"
I am not sure what is meant by "fair to myself". How can we possibly do that in all fairness with Alzheimer's. It is a horrendific disease and I am prone to just try to make the best and happiest arrangement that I can. But I do put her happiness ahead of my own. I have it bad but she has it much worse. Not being able to remember so much of your life must be the worst thing you can have. Cancer, artheritist, hearing, diabetis, etc. can not hold a candle to AD. In a man's lahguage it is necessary to sometimes just "ROLL WITH THE PUNCHES!!!!!"
Bill, you seem to be doing a wonderful job. All you men here are just fantastic. My dh would not be so condesending to me. He is just "not made" that way. I think everyone needs to do what works best for them. I hope you can find a suitable bribery to keep her quiet while you do your sports thing. I think it is important we still have some kind of life of our own without caretaking.
Glad your bath system is working. Sometimes preperation helps the situation and also being positive.
When dressing do you have her a outfit laid out in advance so she doesn't see the other things and make it more difficult for you".
Hi Lois, While she is trying to sponge herself in the tub, I lay out what I think will work but she usually has to do a little of her own looking. I wish I could remember what she was like before AD but her old self has just disappeared. I am caring for my LO but not my wife of old. I have just lost those memories. Oh well!!!!
bille-- Just a thought. The summer my daughter was 18 mos. we went to the store to get her some little sundresses with the poofy panties to match (2 sales). Instead of just chosing and putting them in the cart, I pulled one of each print in her size from the first group and told her she could pick 2. Then repeated with the choices from the other group. She could pick 3. I figured since she would be the one wearing them, she should have a say.
Could you try something like, "It's supposed to be cool and rainy today so I thought you might like one of these outfits." Only put out 2. She would still have a say, but you wouldn't be dealing with prolonged decision making or a pile of things pulled out. I find that the more times I offer choices, the less resistance I run into over all. Infact, some of the time he tells me to decide---but he had the choice.<grin>
carosi, when my daughter was 18 months old I did the exact same thing. I picked out two PJs and asked her if she wanted the pink one or the yellow one. Everyone around me thought I was nuts, but she really did have a preference. Like you said, she was going to be wearing it.
Also, why not give her a chance to try out some really safe decision making?
Bille..back to your post. I understand what you are saying - and I believe I know how you feel.
It is a surreal life we live, and it IS sometime like we are taking care of someone other than the person who was our deepest love, our lover and sacred life-mate. If it helps any at all, know that admidst all of our joking and getting off topic much too often,.... most of us have feelings similar to yours. Most of us are mourning the loss of that special kind of love and are grieving just like you are. I could never fault him for all he has become. He didn't chose Alzheimer's Disease.
I have tried, but I don't remember the last time he was himself and we embraced one another as husband and wife. If only I had known, back then, that it was the last time, perhaps I'd have held him tight just a minute longer. I do understand how you feel, and I share your loss.
Great subject cause I just got back from 33 1/2 hrs. of R and R ( who keeps track of the time :-) ... Yes about 3 weeks ago I hired 2 gals that split time and take care of DW... 2 half days during the week and every other week-end from Fri at 4 P.M. till Sun. at 2 P.M. if I want 2 nights away or from 10 A.M. on Sat. till 2 P.M. on Sun. if I want 1 night away... $12 hr. on duty and $25 night for sleeping... Both are CNA,s ,, matter of fact the one is a gal that was a nun for 30 years and was a music teacher in the catholic school system ( brings her keyboard and her and Dee sing old songs that Dee remembers )... Dee is a bit upset when I tell her I,m going to be gone for a night ( I don,t tell her to long before I leave cause she asks me over and over when I,m going to leave and why I have to go ) She is upset with me when I return and that all adds to the guilt we all feel but I refuse to fold to the guilt.... For the first number of years Dee had the AD I fell into the trap of thinking I would have to give up the dreams of things I wanted to do yet in life but I have hardened over time and damit I will try at least to fullfill some of those dreams.... My advice ,, if you can afford ( $ ) to take the time out of the house,, regardless of there disapproval...... DO IT DAN