Brought my dh home late yesterday after noon. Oh my, has he gone down hill in the two weeks he was at respite. Not blaming them at all it is just the terrrible condition.
He couldn't sit still last evening..Sundowning. Before he left when hospice had ordered a walker for him he said no way do I need that and I am not going to use it. Well I kind of agree with him. But, he wasn't in this house an hour and said where is that walker?? He said he needed to use it. I knew he was walking even slower then when I took him, but that was real shock to me. He said he didn't feel steady on his feet.
I had to help him take a shower and guess you could say undress and dress him. He didn't need that much help two weeks ago. His speech is even worse. Several times I had no idea what he was trying to tell me.
I am exhausted already. If he keeps adding what I call "bad things" but, it is just the normal for this condition, he will be back at the ALF for good by fall. Just don't think I can do this. I am exhausted all ready and he hasn't been home one full day. And, needless to say, I am depressed...really depressed.
It is almost like I must have been thinking I feel so much better having had 2 weeks of respite and I expected him to come home and it would be a breeze for me. Wrong...Wrong...This ain't no breeze...this is hell. Guess I forgot what it was like and it is a shock to my system. Call me stupid...I wasn't prepared for this... how could I be so stupid???
My advice now to anyone is DO NOT TAKE two weeks respite. You will love it and feel so good...then the return to the snake pit will jar your senses and you may wonder why you even did the respite.
aww judith, i think it maybe true. we do get a brief glimpse of how the rest of the normal folks live, and its a saddening and stressful time to have to go back to the humdrum of caregiving. i think thats the reason i never used the hospice respite they offered. i was afraid i wouldnt want to come back and take over again. but there are others who do feel refreshed and ready to see it thru yet once again. today is day one, in a few days you may feel ok with having him back. i hope his setbacks are temporary.\ divvi
YIKES!!! Aww Judith I am so sorry you are so down. And your bruised up face too.
This sounds distressing, that you almost wish you had not taken the respite. I know that the other day I had to rush home from working hard at my market to not go over the 10 hour respite, and how I wished I had at least 6 more hours.
You know of course I have put in for 3 weeks in November. (still awaiting approval) My friend wants to take me on a tropical Tahiti trip for 2 weeks. AND ALREADY< before you even posted this, I was thinking how I would feel weird about it, and HOW would I feel coming back to likely even more challenging days.
YOU ARE NOT stupid. Please don't say that. You just had your hopes dashed. Praying that you adjust soon and get over your deep depression.
But the thing is...you now know about the ALF, and have a plan. He was going to tumble downhill at this point regardless. But placement is now not an entirely unfamiliar concept. Get on a list when you're ready, and continue to gauge how you feel, knowing that you have a way to survive as needed.
Judith, I think you would feel more exhausted if you hadn't gone. It's a reality shock to pick up the burden again and find it even heavier. But it will help you plan for the next few months. You'll be okay - just take one day at a time.
This is so strange. This experience reminds me how "stupid" I was when I was young. I use the word "stupid" because I don't know another word to use.
When I had my first child, a darling daughter, I had the most wonderful pregnancy. I never felt better in my life and I loved being pg....but, it ended in a terrible way with one of the most difficult deliveries my doctor had ever experienced. My daughter and I both almost didn't make it. But, we did and when they brought her into my room and put her in my arms....(here comes the "stupid" part)....I was so upset, because she didn't know who I was...I just couldn't get over the fact that I could have been holding any baby...why didn't she know me? My family laughed at me for years about this and of course I did too after realizing what a strange thing to even think... how could I have ever thought she would know I was her mother??
How could I have thought just because I had such a great respite and got lots of rest that bringing my dh home would be good. I guess I just didn't want to face the fact that after the respite it could be worse then before. I'll get a grip again in another day or two. Thanks for listening to me and thanks for your comments. Great people here and Joan is such a blessing for providing us this blog.
Oh Judith, I'm so sorry that your DH has declined so fast. It's good that you realize that it would have happened whether you were there or not. Unfortunately it was not what you expected to come home to. I have not had any respite, but when I do get a few hours by myself I come back to the same ole' same ole'. So to me it just stands to reason that, that happens even when you go away for a week or two. I know that some might feel refreshed, but I don't think I would. I believe that for me respite would just mean a break for that period of time, fully knowing what I would come back to (but trying to have a good time while I was away). It seemed from your posts that you did relax & rest, but I totally understand why you advise against a long respite. YOU ARE NOT STUPID! You are just a caregiver who HOPED that some time off would give you a break & maybe it wouldn't be so hard when he returned, & maybe if he wouldn't have declined like he did it wouldn't have been so hard. You are doing the best you can & we all know it. Like mary75* said, take it one day at a time.
Years ago when lived in Ohio, I went to Florida for spring break in March with my kids. When I got home, I was so full of sunshine and hot weather, I immediately took out my summer clothes and put away my winter stuff. HA!!!! It was MARCH! In OHIO! What was I thinking???
You know, Judith, I think I would be in the same situation you find yourself in. If I took a one-week respite and went on a cruise, or visited family up north and lived a "normal" life for a short time, I'd come back believing I was energized and ready to give it my best. And I think after a few hours of being back, I'd realize that I was already missing that "normal" life I had a glimpse of.
It makes me think of how sometimes we look so forward to something, forget about living "in the moment", and then when it comes it is a disappointment. Although of course Judith you were not "looking forward" to the return of caregiving.
And this can be so long term....last year I cared for my sister and she died in three months. We are mostly in it for the long haul, and we just never know.
I agree JudithK..this is how I felt last year after 2 weeks away. Then about 3 days before coming "home" I began feeling the depression of knowing what I was going back into again. This is why this year I am not really going anywhere...apart from not wanting to face having a normal sort of life even for a short two weeks, I just can't be around normal people doing the normal things that we can't do now and having that driven into me day after day..
I don't know.. I wonder how people who are divorced feel...do they go through this too or maybe once out of a horrible situation they are ready to spread the wings and fly...the x is not sick or dead..just out of his/her hair. We on the other hand, have had a good married life and as each day goes by, we lose more and more and we see, even looking out our prison of windows and walls, others going for walks together, walking the dogs or just on a walk or a jog or we can hear our neighbors having a BBQ or get post cards or notes from those going on fabulous trips abroad or just to the beach...
We are lucky to find time to go get our hair done for a mere couple hours...no wonder we find we are depressed, lonely and at sea in general.
Oh Judith, I'm so sorry that your DH has declined so fast. I think we see it more when we come back to the care giving after a break. Just for that two weeks we think we will be refreshed and will carry on...i know that's how it was for me when Dh was in hospital for 2 weeks, he is worse than ever now, even the kids have commented how their father has declined further since coming home.
You, all of us are doing the best we can, we all know it's not easy. Like mary75* said, take it one day at a time....that's all we can do.
Judith, please do not beat yourself up about your break. The downturn was already coming. I think that when we step away and then look again, we see things that we did not see before the break b/c we are so close to the daily activities that our senses are dulled. Then we go get a break and come and look things in a new light and the penny is not as bright as it used to be. you needed this break and it will give you strength for what is ahead of you. Just remember you are doing your absolute best to give him the care and love that he deserves. Give yourself a pat on the back, take a deep breath and get ready for the ride. However, never never never turn down any help or turn down chance at respite even if it is for a few days. Arms around, we are here for you.
I don't really get it though. It seems like EVERYONE says that after their mate was in a facility, when they came home they seemed to go downhill...SHELLSEEKER50 what you said makes sense but does that explain it all?
I am getting ready to take my 10 hours respite today. I was looking so forward to it, drive to town meet friend for breakfast, haircut, beach, shop and come home. However he had an up and down up and down night and I am fussy and tired. It is one of those rare days where I feel like I cannot do it anymore.
Mimi expressed it well on the "What is good about AD thread"
Besides all that, love to you all, hugs and hope too.
Judith, please stop feeling bad about your MUCH needed break. Julia and Shellseeker50 are right. The changes are coming they are all down and you need to take your breaks when ever you can. Being kind to yourself is important, truely very important. Changes are happening everyday and sometimes when we are in the mist of all the work that is needed we don't see it because we are to busy reacting. Take the rest and help when ever it is offered or available....listen to Shellseeker she's right.
Just talked with the VA and Hospice. The hospice had ordered a walker and wheel chair for him when they first started coming for his evaluation. Now since coming home and it is obvious he needs and wants the walker I started communicating with the VA this morning about getting one ordered from them. I got so pi**ed off at them...I give up getting one from them. First I would have to go pick it up and that is about a 30 mile trip on one of the busiest freeways with very heavy big rig traffic. Even though that drive makes me crazy I would have done it.
Then the gal from VA said "first we have to schedule an appt. for you to bring him over and be evaluated and trained on the use of the walker"I tried to be nice, but I think I went off the deep end. I told her Visting nurses that were here before hospice told us he needed one. Then hospice came aboard and they ordered the walker...She said that didn't make any difference, they (VA) had to train him. I then tried to explain to her that he had AD and wouldn't remember a word they said by the time he got to the door to leave. Like talking to a wall...we have our rules and it is the law....
So then I called hospice because I was told they would be dropping their care this week or next and could they help me get a walker before they leave. The great social worker said to me: She was so glad I called because the fact that he now really needed and wanted to use a walker would probably allow them to stay longer and not to be concerned about getting a walker myself.
She also said that the decline in memory, speaking, etc. is one thing, but with hospice it is more the physical decline when they get concerned and a change in needing the walker is considered a decline in physical ability and they would evaluate it later this week, but probably will stay on with us. That makes me feel so good...because they are like angels...and I have a 24 hour number I can call them night or day.
Oh Judith, so glad that Hospice came through for you. We won't even get into a discussion about VA. (I know that some people here are getting great benefits from them & I am happy for them because they deserve it!) I hope this makes you feel a little better, you just sounded so distraught before & I know that we all just wanted to come & help you & “make it all better”! I know that this doesn't make it all better, but at least it will be helpful. Hugs to you!
I have no faith in the VA either..still waiting on the decision about Dh's disability...called get lots of blab..time for notification of Congress Critters ( for all the good that will do/S)....Imagine this whole entire country on a program as bogged down as the VA..we would all perish before we got seen...
All of you were most helpful with your commnts. I am much better today. Except for that experience with the VA....that VA gal kept saying he has to have the lessons on how to use a walker and I wanted to scream at her.. "he doesn't understand directions and even if did he wouldn't remember them". Gee...we were just talking about these doctors and med. helpers, not understanding what AD involved. They can't remeber much...how hard is that to understand.
Mimi...we are on the same page with regard to the VA. Love/hate relationship. I understand that the Congress now never gets involved with the VA decisions one way or the other unless they have violated the law. Do you have a VSO officer for your hd?? They usually can get something going for you when it stalls.
Judith, I am also on the same page with you & Mimi as far as the VA goes. I am also waiting on a disability decision for DH & it has been over a year ( I suppose I should follow up on it, but it gets so frustrating when you get passed from person to person. I'm also frustrated because according to them we make too much money for any of their benefits. (but it was OK for him to put his life on the line over in Vietnam). Anyway I'm glad you are better.
I am so sorry for all the problems the VA is causing. You all know that I work-volunteer with Hospice. If they decide something is needed or indicated you get it. Hospice is not just for end of life, rather improving the quality of life. Isn't that what we all want?
Right blue...I love these gals that are coming here and the dr. is AAA+. I would really miss them because often they are basically the only real contact I have with the outside world except with my cleaning lady on Wed.
They help me as much as they do my dh. I have been doing research of hospice care for Ad people ...it is very interesting. Their standaads are really strict for AD people...like they basically have to be stage 7C...which is like nearing the end...if they make it that far. But, many of the hospice people are trying to get the hospice to change the requirements for AD people because they all are so different and it is really hard to judge how much time they have left. And, like my dh one day they can walk OK and the next the can't.