I found out this week that I will need surgery in the next month or so, and will be incapacitated for about a week. I have spent the summer going to many doctors appointments and for diagnostic tests, and have so far managed not to get my DH concerned. It has been difficult because I can't leave him alone so I have had to have neighbors come and sit with him while I went to "meetings" (fiblet) or to a doctor's appointment "I'm just getting everything checked out, dear, so that I can stay healthy and look after you" (truth). I realize he will have to go for respite care while I am incapacitated, since he will need someone to look after him when I can't. He is currently stage 5/6. And my surgeon is aware of the complications of having to deal with my DH as part of my treatment, so I know that will not be an issue because his office has already put into motion what needs to be done to make respite happen.(except that my dH has never been away from home for respite, and I don't know how he will handle that). My concern is this - I have told him nothing so far, for two reasons. The first is that I don't want him to get concerned, and then depressed, because that will only make his AD symptoms worse. As much as I know that he will need placement soon, I don't want to speed up the process if I can help it. The other reason is for me - if he showed no emotion at all to the news, (he doesn't show much empathy now towards me) I think that it would hurt me more than the surgery and all the stress I have been under combined. I have so far managed to stay upbeat through all of this upheaval, and I tend to be a "glass half full" kind of person anyway. So does anyone have any advice for me on what course of action I should take?
Hi Sorry to hear you need surgery and I pray it is not to serious.
When my DH went to respite the first time I nearly went crazy with concern as to how he would react and if it would set him back re symptoms. Was I wrong!! He loved all the attention and has decided to move there. He is there now and I have seen a change for the better with less aggression. He is doing well. Have you tried to tell him that you are going on a short holiday or some type of conference to learn more about caring for him? Dementia Fiblets!! I was totally surprise yesterday when DH called last night and was so upbeat and happier then I have heard him in sometime. I know they all react differently but sometimes we tend to fear the worst and then are afraid to try something new for them and for us. That is were my DH and I are now hopefully you can work it out for both of your well being Please keep us updated.
bqd So very sorry to hear that you need surgery. When my DH was home & at the stage where he could understand what I was telling him, I learned after a few mistakes not to tell him ANYTHING that was happening in the future. If I told him something that was a week away he would CONSTANTLY – numerous times a day - ask me when it was happening. Since your DH has never been to respite & you are probably going to tell a “fiblet” as to where he is going & why, then in my humble opinion I think that you should put off telling him ANYTHING until the very last moment. But only you can make that decision. We can just tell you what our experience has been. Keep us informed. Elaine
When I took my DH to respite in June, the head nurse came to our home to evaluate him a week ahead. So on the day I was taking him I just said we were going to visit Cherrie ( the nurse). After we arrived I said he was going to stay a few days. They whisked off to a program in the dining room and I unpacked his stuff and signed papers and left. I think he saw me go but I didn't even go in to say goodbye. I knew I would cry if I did.
Thank you Jazzy, ElaineH and MaryinPA for your comments and advice. What I am hearing from you is - 1. don't tell him about respite until he actually goes. I'll see if I can get one of the nurses from the respite home to evaluate him like you did, Mary, so I can use the same sort of fiblet. 2. Don't tell him why he has to be away from me for a week. Jazzy, I like the idea of going to conference to learn how to take care of him better. In the past I used to attend a lot of out of town conferences, sometimes for a week at a time, so he might be able to understand that, and since caring for him is all about him, it would be something I think he would accept. Good fiblet! 3. Don't talk about the future. Elaine, this I experience on a regular basis, whenever something out of our humdrum existence is about to occur, such as having our DD come to visit, he doesn't ask when its happening, he tells me that it is today, when it could be two days from now. And every day until it happens, it is today.
A bit off topic, we went to our local agricultural fair this evening, with my DS and BIL. Its the first time we have been out in a crowd in a very long time. Not only was it crowded, it was noisy, dark, and raining. My DH acted like he had aged 20 years from the time we left home in the afternoon, until we had been at the fair a half an hour - I had to guide him around the grounds and watch where he was stepping, he had difficulty with simple stairs, moved so slowly, was confused by the lights. He did enjoy the heavy horse show where we could sit down in relative quiet. But I learned a lesson - if we go again this weekend it will be in the daytime (we like to go to the demolition derby). But more importantly, I learned just how far he has gone downhill in the last little while. Maybe going to respite for a week is a good idea because it won't be much longer before he is in an ALF or NH.
I agree it is best NOT to tell them about respite beforehand. That was one mistake I made when I put my husband in respite. I had the mistaken notion that by telling him he would agree with me and happily accept it. He never gave me a hard time but was constantly asking about it, when he was going, how long, etc. if I were you I would have someone or a family member be on call in case he has behavioral issues. In my case I was on vacation and they called me because he was urinating everywhere but the toilet. They thought it was a UTI which it was not but my son had to take him in to rule it out. His doctor felt it was just behavioral. My husband is into stage 6 and I just placed him 2 weeks ago. He is doing better now but the first week was tough. He ended up,in he hospital with chest pains. When I go he seems so fragile and was something I did not see when he was home because I was so busy trying to hold everything together. It is truly heartbreaking to see them wasting away like this. I wish you the best with your surgery. He will be well taken care of at respite. The other thing about respite is that for me it was the step in the journey that prepared me for placement. At first I was terrified of respite but then became quite comfortable with it and left him several times. I sort of see placement the same way. Each time I visit I can see more clearly the reasons why I placed him. I do miss him but honestly I feel as though a 900 pound weight has been lifted and when go visit I have so much more patience and compassion than when he was home.
it may also be of benefit to get him into the respite for a night or two at first to give a trial run. the more they are comfortable in their new surroundings may make it easier when you leave him longer times. sorry for the need for surgery. but yes we must prepare for a plan in place if it happens. I wouldn't tell him either til the morning or evening prior. they tend to obsess over the unknown factors and get quite ansy. if you have meds for him this may be a good time to up the dose prior and during the transition times with drs approval. good luck divvi
Thanks divvi and CO2. One of the hardest things for me in all this is that today I will be telling "daddy's little girl" all about what is happening, the surgery, the need for respite, the noticeable decline in her DF. my stomach has been churning all week as I think about what I am going to say to her. She fears having her dad placed, and since I have always been everyone's ROCK I expect she will be wondering who she can turn to if I am incapacitated for very long. I faced my own mortality a long time ago, but children never like to think of being without their parents, and even though I should recover fully from my surgery and live a long and prosperous life, it is a reminder to her that I am not immortal, and that I won't always be there for her to lean on when in distress. Divvi, I will see about getting a trial run for the respite. Since the date of the surgery has not yet been set, I don't know how much time I have to get a trial run set up and accomplished. My DH refuses to go to Day Care, so this is why I worry about his reaction to respite. I do have some Lorazepam I can give him (I got them for his sundowning but so far we have managed to cope without him taking any) so I will definitely use them when he needs to be calmed for respite.
Bonnie - Sorry you need to have surgery and I hope you have a full and speedy recovery.
Respite...your hubby and mine are about at the same stage 5 with some 6a and 6b. I made the mistake of telling him the night before...he got really antsy and the stuff I packed he unpacked and then he got mad and then the questions!!! Make sure you have a TV for him...they didn't have any so he didn't get one in his room. He didn't do well where he was because the other patients were at the end stage of this disease so maybe check what level the other patients are at. FYI -the nurse told me that my hubby is too far along for ALF because he needed more care than they provide and LTC or NH was where he would be placed.
Jazzy - I didn't realize that your hubby was placed I thought you were still waiting for the call...must of missed it. How are you doing?
Sorry about your surgery, Bonnie. All the best wishes to you. I had a similar situation with my DH. I told him the morning we were going. I told him half truths. I said I would have to have neck surgery and that, since he can't stay alone, he would have to stay at a hotel. When we got there he seemed a little confused, so I explained that it was a hotel for people that couldn't stay alone. I told him I would pick him up when I came home from the hospital. He was quite content with that. Half truths, fiblets they are a big help. I did have the neck surgery and he was fine. Hope I helped a little. Carol
Thanks Amber, Carol, and Coco. I have another appointment with the surgeon on Tuesday, and will also be getting my pre-op testing done. I have already decided that I WILL SAY NOTHING TO DH, and just drag him to my sister's house at 7 AM, tell him I have to go to a meeting, and I will pick him up again when the meeting is over. I still have to meet with a social worker to arrange the respite, but I can't do much about that until I know the date of the surgery. Hotels are a good fiblet, Carol. Everyone has come up with such marvelous advice, I am so thankful to have all of you with me on this journey! I'd hug you all if my arms were long enough! And yes, I will keep everyone informed of how everything is going. Thank you for caring
Sorry to hear you need surgery. My prayers are with you and your dh. I've read all the good advice, I couldn't add a thing. Bless you. The other Bonnie
Hi Jazzy, thanks for your concern. I can tell you that I will be very well looked after - the surgery will take place in our local community hospital, the home care nurse has already contacted me to set up a visit, she is also looking into the respite for my dH. I think one of the advantages of living in a small community is that the health care tends to be more "custom" and less "assembly line", and this gives me a great sense of well being. I have decided, after discussing it with my DD, not to do a trial run of respite for dH. If he hated the trial run as much as he hated day care, then when i really needed him in respite at the time of my surgery and recovery, I wouldn't be able to get him to go. I am also hoping he will like it as much as your dH does! It would make it easier on all of us!
Good idea about not doing a trail run.....hubby didn't like it and now won't go into respite which has now made placement the next alternative....also I'm still dealing with his rages which has a lot to do with it too.
I also have found that living in a small community you get more personal care. A phone call now and then about how things are going and how I am doing. What services they are looking into. Just talk if I can....he usually is right there stuck to my hip so can't say much.
My husband has some Parkinson's type dementia, so less memory loss and more emotional flatness and problems with executive function. It really did hurt that he didn't show any concern about my melanoma surgery. We have a college-age son at home, so I came home with instructions not to lift anything over 20 lbs and it was ok. Two single friends traded off being at the hospital with me the day of surgery. They understood how much the system is oriented towards everyone having a spouse with them.
bqd - you are in my heart. Please let us know once you get the dates. I hope this is nothing too serious and that you are back on your feet again soon. I think you are making the right decision not going for a trial run with respite. I had surgery last year and DH went to stay with relatives - he was not happy but I kept telling him that he was doing it for me because I needed to be alone to recover. It ended up working out OK but I think he is not as far along as your DH(?) Still, you have to take care of yourself. You can't keep him happy 100% of the time. I know I worry what will happen if I don't stay healthy. I guess we all have that fear.
Thanks ring, I really appreciate your support. Saw the surgeon today, and also had all my pre surgery testing done, but still no date. I hope it is a day when my sister is in town! I had to get dH up very early this morning so that I could get to my appointments. I worried all night about how long it would take him to get up and dressed in the morning. I think I am getting better at fiblets. They are so hard when you are accustomed to always telling the truth, the whole truth and nothing but the truth! I told him I had a breakfast meeting to go to, so I wasn't going to make coffee or anything before we headed out to my sister's so that she could look after him, and that she would give him his breakfast. Of course the real reason I didn't make coffee was because I had to fast. Yes, my hubby is farther along than yours, and so I am avoiding any discussion about my health - this is a busy time of year with all the service groups starting up again, so its easy for me to say that I am going to a meeting. And I've decided to use the conference excuse for when he needs to go to respite - I can easily tell him that none of the neighbors can take him for that long - that would not be a lie!
The surgeon's office called yesterday. My surgery is scheduled for October 7, and I have to be up at 4:30 in the morning in order to be ready on time! That is going to be one sleepless night! I've already called the social worker to get her started on making arrangements for the respite for dH. I have decided I cannot lie to him about why I am going to need him in respite. I have never been a very good liar. So I am going to tell him the truth, and say that I need some surgery, it is not life threatening, but I can't look after him while I am recovering, and I will pick him up and bring him home as soon as I can (probably a week). Since I have had a falling out with my DS and BIL, which is still not resolved (my DS is still angry with me, and she has hurt me so deeply this time I don't know if I will ever be able to forget ), I have arranged for a long time friend to come to help me at the time of my surgery (she will be there to take me home from the hospital). She has such a calm, soothing way about her I am sure that she will help me feel better quickly. And another friend (whose husband also has AD) has also offered to come and spend some time with me, when I am up to it, and I appreciate this very much. This whole experience has left me feeling very alone. But in a way it has also helped me focus on myself in a way I never have before. Its about time this caregiver cared for herself!
I often tell hubby just before we have to do something. When he says why didn't tell me this before I fib and say "I did" because he know his mind is fading he doesn't argue and pretends that "Oh yes now I remember". Might be something you could try with your hubby's respite. The other thing is to have something where the cops are involved like I have and if he doesn't go they will take him. I know you and I both don't want to have to resort to this but for your and my health it's a good tool to have.
Jazzy, I had my surgery on Monday and came home yesterday. Got to sleep in my own bed last night which was wonderful. My friend is looking after me and making sure I don't try to do more than I should - I haven't been waited on like this for a very long time! Everything went very well, hubby has settled into respite, and I pick him up on Friday night at 7. So I have a couple more days to start feeling like my old self before my "normal" starts again
Thanks everyone. Still haven't heard anything from the respite home, so I assume that all is well there. I am enjoying not having to worry about dH every minute of every day! I am hoping that he will have liked his little vacation enough that we can do it again, and I will be able to go visit my 96 year old father before its too late. My good friend left this morning, but I have another friend, whose spouse has AD, who will be keeping me company today, and making sure that I don't try to do more than I should! Bonnie