I have just come back from spending 3 days in New Jersey with high school friends. The 4 of us formed a club when we were sophomores (the first club meeting, a square dance, was my first date with my wife) and we still try to get together once a year. My wife's sister came to take care of her. It gave her a good appreciation of what I am going through. I wasn't sure she could do it, but she did well. Even surprised herself. She said she felt good to know that she could do it.
The only sad part of the trip was that one of the 4 has pancreatic cancer. One day we had to take him to the doctor due to increased pain. Also, his wife has Alzheimer's and he is the sole caregiver. A very sad situation. But it was good to get together with my highschool buddies, realizing that this will probably be the last year for the 4 of us.
Respite is something I cherish. I am glad that you got away and am sorry about your friend w/cancer. I got away to the beach a few times this summer for overnights. In Januray I will go away w/my college roomies. We use to meet for brunch once a year but the past 3 years we have done weekends. Even just a few hrs away from home helps greatly.
I only just found this forum tonight and this is exactly why I was searching for info. I haven't yet got into being a regular on any of the Ad forums for many reasons. But since his diagnosis 9 months ago at the age of 53 I have been trying to keep him active in the things that he likes to do such and camping and fishing ( I would rather be at a spa or shopping, then sitting around a smoky campfire, lol). Well last week, I actually took a trip with out him (my 30th class reunion), I have totally felt guilty ever since. He was well cared for, and did for the most part great. But I know the whole week while I was gone he worried I wouldn't come home. He's made a few little comment since I got home about seeing old boyfriends, did you ever think of staying there forever, etc. I actually enjoyed myself for the first time in years. As you all know, just cause a diagnosis was finally made on a certain day, doesn't mean that that's the day the illness started. It's not that I don't get out on occasion with friends for drinks, shopping etc. It's just that I actually had a whole week to just be me, now I feel guilty about enjoying myself. I don't know what is worse, being strapped down 24/7 or getting that time away only to come home and feel like I do. Sorry, I just don't know which would be easier. I just know that I don't like feeling like I am right now. I wonder sometimes because we are dealing with this at a much younger age, then say his parents when his Dad had it, if that creates more issues or should I say different issues. I just hope I can find the middle ground to keep myself sane and him happy. Rk
Rk, then you must adjust the way you feel right now. It is absolutely essential for you to get time away. You will not be able to care properly for your husband if you don't -- you'll make yourself sick.
Now, you think about it. If your husband were still healthy, wouldn't he be the first to agree that you should do things like go to the reunion and enjoy yourself?
I don't think he was reacting negatively to your going on the trip per se, anyway. Many AD spouses -- those that are aware of their problems -- develop concerns that they might be left for someone else. Sooner or later, your husband would have started thinking about that. Maybe he already had been worrying about it, but just didn't know how to bring it up. Since the trip gave him a way to broach the subject rather than just silently stewing, now you know, and you'll be able to reassure him. So the trip was actually very beneficial for him, from that standpoint.
Rk & Marsh, I have found respite essential. My DH can still stay home alone so I have gone backpacking for the last 5 years for a week with women friends. A good friend checks in on DH and plans outings with him.
Rk, I am glad you found this site. There are quite a number who are posting whose LO has some form of early onset dementia. My DH has EFAD. He is 55. Adding to Sunshyne comments, I think my DH get anxious when I leave because he has become more emotionally dependant on me. So while he encourages me to get away, this anxiety manifests itself. Last summer, I planned a visit to our daughter and thought it would be fun if he went a week ahead of me since I work and did not have enough vacation time. However, he kept forgetting the plan. He told a mutual friend (D) that he thought I was trying to get rid of him and why did she think I was doing that. D & I had to laugh because it was so crazy. After the trip was over, he thanked me for sending him ahead as he was able to spend time alone with our daughter!!!
Sunshyne, I only wish I could adjust this week. It's been an awful week for me. You know I just don't know what it is. I don't think it's that I am at the end of my rope. I am totally committed to this journey with him , I love my husband and want to do all I can for him and create the most loving easy going journey I can. Even though this is the the lonely-est journey at times and I think about all we/I am missing in life. I struggle on. Up until this point I have just kept my head up and worked so hard at keeping life as normal as I can for him. As I said, I have been able to get times out with friends and have never felt bad for doing so. It's just this time, I guess cause I had a whole week to just take care of me, (it was actually wonderful) But after getting home he has been even more clingy. It seems like I can't even sit down to respond to this forum without him standing over me, he listens to every phone conversation. I just feel like if I stop short he's gonna run straight up my a**. It's making me crazy. I just don't know what to do to ease his mind that it's all ok. I know that I need a break from time to time and I will try it again, I just need to find a way to actually not feel like I put him in a downward spiral just because I do take some time for myself. Cause as all of you know their downward spirals effect life for days/weeks to come.
Lizbeth, I only wished my Dh could be home alone. I can't work anymore (I soooooooooooo wished I could, it would be such a gift if I could). My Dh has encouraged me to go with girlfriends for dinner etc, but I have a feeling he's not gonna be so encouraging anymore. I guess I will have to wait and see. It will be interesting to see how he handles the next girls night out, or should I say the next girls hour or two out. Only time will tell. Thanks for the warm welcome. As I said in my first post, I haven't got active very active in any forums cause for the most part I hadn't found a place I felt comfortable with. I think there are so many different issues when dealing with a spouse versus a parent etc. I like that this forum deals with the spouse issue mainly. Hopefully, my dh will let me have some time to myself to check in. It's nice to find this place. Thanks Rk
Welcome to my website. You have come to a place filled with spouses who understand what you are going through only as another spouse can understand. Our issues truly are unique.
There is a lot of information on the home page - www.thealzheimerspouse.com - to help you. Please log on and look at the topics on the left side of the website. I particularly recommend "Newly Diagnosed/New to this Website"; "EOAD (Early Onset Alzheimer's Disease)", as at age 53,your spouse fits that category; "Understanding the Dementia Experience"; and "Previous Blogs". Scroll through the previous blogs, and you will find many, many topics you can relate to. I encourage everyone to check in with the home page at least a couple of times a day, as I write a new blog almost every day, and update news articles and other information daily.
You will find honest, respectful discussions here on this forum of topics so personal to spouses that they are not discussed on other forums. Everyone is caring, helpful, and non-judgmental. I hope you will visit often.
Rk, taking some time off will NOT affect your husband permanently. Stress can exacerbate symptoms, but they can revert as your husband settles down again. AD is a complete and total yo-yo, some call it a roller coaster. Symptoms come and go. And it's a roller-coaster for you, too, because of that. We get lulled into a false sense of wellbeing when things are going OK, we get terrified that it's disastrous when our spouses are having a bad day.
My husband's symptoms are extremely sensitive to stress. It's amazing how different he can be when I manage to get the current stressor resolved.
It's not surprising at all that you crashed after a lovely week, having to come back to earth again. You'll bounce back, it will just take a little while.
You just need a little practice in getting away and staying comfortable about doing so.
You're certainly not alone in being driven buggy by a clinging spouse. That's a symptom that can develop regardless of what you do. I'll see if I can find a thread on the subject to bring to the top for you, maybe there are some ideas to help you cope if he doesn't snap out of that.
planned several respites then they all cancelled due to health issues at last minute..have yet in 10yrs to actually get out overnite for respite alone..sigh....i guess i am resigned at this point. divvi
divvi, you are one of the very most creative and innovative members we have. Surely, if you really put your mind to it, you could find a way. Don't disappoint me!
Rk, you may find some help in the threads
Togetherness
When Your Spouse Behaves Like a Child
Shadowing
I've brought them to the top for you. There are others (this being a very common, and extremely annoying, problem.) If you'd like more, let me know.
Looking at these ... maybe it would help your husband become accustomed to being separated, and give him some added sense of security, if he started going to Adult Day Health Care. That way, if you were gone again, he would still have the comfortable routine of the center, and his friends there, to distract and comfort him.
.. and always, try to find some new diversion for him. It's like having kids in the middle of a tantrum and a big dog walks by.. the focus is changed and the tantrum stops. For my husband recently, it was getting an electric razor!
I'm happy to say that after my stepdaughter heard me speaking of my sadness that DIL and Granddaughter went to Calif to visit her sister after just a couple weeks here alone with us (after sons deployment) she began to realize how isolated and hurt I was becoming. It did however take a statement in jest for her to even consider that it might be a good time for her to visit her Dad, and do something special for me. She had other reasons for the getaway too (trouble with fiance' and questioning their relationship). But instead of wallowing in her own despair she called back and said she'd like to come give me a break. In 4 years this was the first time ever- EVER, that someone has volunteered to give me a break. She flew in on Saturday Oct. 12, and in the a.m. of the 13th I drove to meet DIL in Everrett, WA to see the return of my son's aircraft carrier. I stayed that night with them (Sunday) as they were getting keys to their new apartment the next day and wanted me to see it. It was short, but very special to me. I drove home Monday, and stepdaughter flew back to Calif on Tuesday.
THEN, on Wednesday the 15th (Oct) I had class number one of six. It is called "Powerful Tools for Caregivers." The facilitators lead discussions and workgroups, and supply a book called "The Caregiver Helpbook." Here's the biggy. Aside from my kids, we have NEVER, EVER had a caregiver/companion. Well, I learned of this class after contacting Senior Services Agency, part of Area Agency on Aging. They have a program of providing "UP TO" 15 hours per month of NO, or LOW cost in home companion/caregiver help. We qualified, (I applied about one month ago), and for the first time ever we had a really bubbly young lady spend 4 hours with DH so that I could attend the class. DH was on and off OK with this, especially after the social worker told him this was for ME, and not to belittle him. It was so that I wouldn't worry, could enjoy the classes (or whatever I'm doing), and be happy that he has someone to spend the time with.
The hours provided for the class are separate, and do not count against my 15 hours per month. So here I have this agency director asking me how I want to use those 15 hours, and believe it or not, I have been DUMBSTRUCK! Like, "WOW! I don't know what to do with myself." LOL
Briegull, ok now that the shaver has been such a success, get your DH one of those buzzing colgate type 5dol battery toothbrushes!:) this has been so much interest for DH he walks around brushing teeth all DAY! whohoo-this is a good thing, as MStewart says, and he loves the buzzing from this one too. might add, he puts it in his pockets too, (dare i say more he loves the buzzing..humm)haha...to each his own =
Sunshyne, you are so right, if i really wanted to get out i could find away. i had a 7day cruise planned and his daughter was going to come and aide during the day, then he got a super UTI 4days before and hospitalized. then the next time he started the myclonic jerking which was new and scary, didnt go to mexico then either. always something i guess i am gunshy of planning now! plus every time i get an aide that can manage him they leave the agency so i am constantly breaking in a new one..sigh,,,,, always something, i will work on it:) divvi
Thanks everyone, for your insight. joang, Thank you so much for starting this forum. As for being new to AD, actually his Dad had it for several years before Dh was diagnosed. So not exactly new to it, just from a different perspective. I actually think Dh may have been showing sign's as early as 2002. But know at least since 2005. But because of his and his families denial that there was nothing wrong with him, and I was a crazy B, it wasn't found until last January. Had it not been for that I think the doctors may have been able to be diagnosed around the same time as his Dad, had he opened up and admitted something was wrong, instead we are playing catch up. Thanks for being so welcoming! It's nice to know there is a place where others understand, cause yes as a caregiver I can find common issues among all caregivers but as a wife, the issues can be so different. Plus I think being younger can also bring up a whole new set of issues. I swear I will get thru this, I just am having a bad week. Thanks for the links, hopefully he will take a nap this afternoon and I can sit down and read them. Thanks again Rk
Sunshyne, I don't think at this time he would even consider a Day Care. Our problem is everyone there is so much older than him. I thought of it, and even asked if he could just go help out just to get him in the groove of going once in awhile. They were not open to that! I know he gets bored, and wants something to do but what he thinks he should be able to do and what he actually can do are two different things. I met with another caregiver wife who's Dh is in his late 50's she's having some of the same problems. It's not that I have no one to help, cause I do,. My Mother is wonderful with him, and his Mom is only about an hour away. I think it was just that my week away really showed me what I am missing and it hurt to know that I won't have what I thought I would at this age and space in time. I guess a reality check! But I think the worst part was just feeling guilty cause I actually enjoyed my trip. Which is something I have to get past. Rk
I wanted to say that it is so important to get out of this environment on a REGULAR basis if possible. Otherwise, we also tend to 'forget' who we are and what we think.
It doesn't always 'feel' comfortable to find that you have been able to relax or that you have been able to actually rest or to find that you actually do have the energy to stay awake longer than usual or that you actually could have FUN for a while without that nagging worry. In fact, I discovered that when its possible to have someone stay for a weekend, it actually takes me a whole day or more to BEGIN to feel like myself again. Then its time to go back..and I think we all understand what that's like.
Thankfully, its been possible (but getting harder to work out now) for one of our daughters to come for a weekend every month or so. I paint and have attended painting workshops over the years. Its something that is not a NEW activity but I confess right here that I've used that excuse to be able to be away when what I've actually done is go no further than 10 miles with my little camper and rest at a nice B&B . My DH would never be at ease thinking that I was away for the ENJOYMENT of it. There has to be a sensible reason. The operative word..sensible..to him.
My sister invited me to go with her on her vacation this year. It was a hurculean effort for our kids to help make this possible, but they did it. I was away for a full week! Amazing..Just AMAZING!! We hiked around in scenic places where she vacationed her children were young. I was glad to have that time to spend with her again AND after 3 days, felt completely renewed. It may not be possible to do anything like that again, but it was truly special and much much needed. Actually this was the first time in 4 years that I fully experienced being away long ENOUGH to feel rested ENOUGH to be 'ready to to walk back into this place of unpredictable strangness.
I read where it is important to have time alone....believe me I could use some time just to myself, away from my home. However, my husband is not to the point where he would allow anyone to come to our home. He wants to go everywhere with me. When our son from Georgia was visiting last year, I had some errands to run, thought I would actually get to go by myself...well, I did, however, my husband wanted to go with me instead of visiting with our son. He really never wanted any buddies to pal around with, so that is no option. So ever since he retired almost 5 years ago, he is always there with me. The only place I go alone is to get my hair cut. It sad to say, however, going to the grocery store alone would be a treat. I guess I could just say, I am going shopping, however, with his temperment I am sure he would either take off walking somewhere or when I came home he would be mad. Sorry, about the pity party today is just one of those days.
Kadee, I understand what you mean. I haven't tried respite yet, either. My husband is late stage 5 and is very clingy/hovering. I thank God that I can get away for an hour or 2 every so often. My husband is usually unhappy when I tell him I'm going out and want to go alone. I just have to go anyway while I still can. When I'm away from him, I think about what he might be getting into. He hasn't wandered off outside, but that's a concern of course.
Kandee, I too understand all too well what you are experiencing. The only advice I can offer is what I have experienced with Lynn. He fought tooth and nail having any help in the home, or day care etc. I didn't push him. The sad part is I knew I needed breaks but couldn't figure out a way to get one. It took my own health failing due to the stress -I had a series of TIA strokes. It seriously got to the point where it was either him or me. I was going to have to place him, or get a much needed break.
The Health and Human social worker who visited me at the hospital got me in contact with agencies who would offer help for us. They tried bringing in help but Lynn's case manager saw how upset he got first hand. They decided for now it would be better to pay someone in my family to look after him. And the case manager and nurse come out once a month to evaluate and check his vitals etc. He fought it of course. Now I don’t tell him they are coming until I see the car drive in! LOL
My sister lives with us, and Lynn just adores her. She takes care of him 4 hours each week, the first time I had time alone I didn't even know what to do! I went to the library and food shopping... but, you would have thought I went to Disney! I was THAT happy over having a bit of time to myself after all these years.
So, I guess what I am trying to say here is if your DH is anything like mine... he will always resist help. Bring help in sooner than later. Don't let your own health fail. Look into agency help in your area and see what is available. YOU deserve and NEED a little time to yourself. It gives you just enough time to re-energize your soul, so you can go back home and be a better caregiver. Best of luck! ~Nikki
Kandee, I have the same problem with the clinging and going everywhere with me. He was angry that I left for 4 hours this morning. My caregiver is very good with him, jokes with him, etc. We even go to the beauty salon together. It is easier for me that way because otherwise I would have to make 2 trips. I take him to Mc for breakfast every morning and then he sits in the car and waits while I run 3 or 4 errands, so it is not too bad. Until her passing this May, I also had my 93 yr. old Mother living with us, so getting out even with him along gives me more freedom than I had.
Today I did some errands and had lunch with a cousin. Very nice. I am like the rest of you, when I do get out alone, I have trouble "living that life" with my newfound freedom. Sort of like loss of idenity.
There is a great sigh of relief when you have a few hrs to yourself to get out and do whatever tickles your fancy. i know, too i waited WAY too long to hire an agency to come sit with DH for a few hrs respite time. like Nikki says just going to the grocery store was a treat.. now thats sad! now i have 4hrs fridays one day/wk but can up that at any time i need more -none of our spouses wanted someone else to come in and stay with them, its just like everything else we have to tackle with them. those of you who say they wont 'allow it or adjust', phooey! be blunt, say i need some time out to run errands and this nice person is going to fix your lunch and watch TV with you while i am gone, no if /ands/or butts. this is one of those times its for YOUR sanity and there is nothing our spouses should be able to say/do to keep you from having this time alone. JUST DO IT!! take heed from those of us who waited too long and now love our time out. they WLL adjust sooner or later, believe me(and others who say the same_). divvi
I had respite today. The local group that helps me out sometimes took my husband off to a local small museum and lunch and I got to go to the communities Ladies Lunch (which is an activity I started and haven't been able to go to very often lately). It was wonderful to be able to go out, and the neighbor who picked me up was the caregiver to a husband who had Lewy Body dementia. I didn't know that about her, but I might just call her and see if she is willing to talk to me about it.
He almost wouldn't go. He was planning on just walking out of the community and getting himself lunch. One of the men who was going with him came inside and talked to him and convinced him to go out with them. So it looks like although he might be willing to go out with them from time to time, I can't actually make plans.
At this point I can't bring someone in who gets paid because he is still taking two hour walks most mornings. He would just walk out of the house and disappear. So I am really between a rock and a hard place. And I think that a lot of the people who haven't called in an agency or hired an aide of some kind are in that spot with me between the rock and the hard place.
divvi - you are right in saying that none of our spouses would have wanted strangers taking care of them. The flip side of that coin is also that most (if not all) of our spouses would not want us running ragged and ruining our health to take care of them.
I continued working while he was still home and that was a lifesaver. Even though he complained about my going to work, it was something that he understood and somewhat accepted. Up until recently, when the CNA's had wanted him to do something with and for them at the facility he is in, they would tell him that it was time to go to a meeting or that they needed help with paperwork.
I used to teach 3 & 4 year olds at Sunday School. Some of them would raise a huge ruckus as Mom and Dad were leaving giving their parents huge guilt trips about leaving their kids alone. I felt so bad for the parents. The funny part was the 2 minutes after Mom and Dad had left, they would be fine and playing with the other kids.
I saw similar responses in my husband at various times and used some of the same techniques to deal with it. For him, that worked.
Well I took the plunge, I actually went shopping by myself...only for a hour, however, it was heaven. A store I like was having a 40% off sale today, my husband was in the garage counting & re-arranging golf clubs (as he does everyday) so I thought I would give it a try, I told him while he was working on his clubs I was going to the 40% sale & left. To my surprise he wasn't mad when I returned. Shoot, I wish I didn't have a broken toe, I would have stayed away longer. lol I think I might invent another 40% off sale & see what happens.
Kadee, at this point my husband can be left alone for short periods of time, an hour or two. I ought to go out on my own more, but like you I don't do it much. But still, sometimes I do go out alone. And you should too.
This stage doesn't last all that long. And it is hard because you can't bring someone else in to "take care of them" at this stage. So both of us need to go out once in a while, maybe even every week, for that hour or two on our own.
Kadee, whopeee...thats right, 'a taste of freedom'HAHAH! thats awesome you took the plunge, i hope others follow your action. it is heaven to get out for a while and just do what you want without caregiving worries. i even had a NEW aide have to give my DH a bath and change of clothing as i always was 'on guard' by cellphone incase it happened and they couldnt deal with it and just call me home to do it myself. wow! i was certainly happy it can be done without me having to do it personally. not fun, but hey! we ARE paying these people to 'care' while we are gone-i guess that includes the not so 'nice' tasks as well:). starling, maybe you COULD hire a person to come for 4hrs in the early morning to accompany your DH on his walk! and then make him lunch or watch tv or anything he may do while you get out? maybe a male aide at this point if he likes to get out for exercise. at least you could be gone and out yourself and know someone was looking in on him...once the freedom bell rings, its heaven to your ears:) i even got my own dr appt next thrus something i have put off for months-
Well my son took DH fishing for two days! It's so wonderful to just have time to just do what I want without worrying about him every minute. I think he is having a good time although it was a struggle to get him to agree to go. He kept asking if I was going and I kept making excuses about what I needed to do. I didn't realize how much a little time alone without worry would mean to me. Now hopefully I can be ready for my caregiving with a better "attitude" God bless our son!!