I am in a transition phase with B. and need some suggestions...For about the last three weeks he has been becoming increasingly disoriented/confused when he wakes up in the morning. Knows where he is and everything, but doesn't know what to do. I have to tell him...get in the shower...when he gets out...now shave. Seems to take about an hour to get going. Then he is okay. So I am getting to work late on these days. Thank God I have an understanding employer and I can make up the time at the end of the day. Has this happened to any of you? I'm thinking of you Mary, I know you are still working...how do you manage the mornings?
I am still working a full time job. My husband is in daycare so mornings are rough. He also needs direction in getting ready in the morning plus he can find more excuses not to go than a 5 year old. I've got where I just keep getting ready for work and remind him that we have to leave shortly. Sometimes we leave on time and sometimes we are late. I also have a very understanding employer which truely helps the nerves. I can remember when my son was young and he pulled some of the stunts my DH pulls now. AD is one roller coaster ride after another.
Shoegirl, my husband has had the same routine when he wakes up. That seems to be what keeps him going. He operates by his body remembering what to do...sit on the side of the bed and dress; go to the bathroom and go, then wash his hands and brush his teeth; let the dog out; sit in front of the computer to play ma jong while I get his coffee and the newspaper, then he reads the paper with me while we have our coffee. This is now taking twice as long as it did. He used to get the paper and fix his own coffee, but can't now - and I have to remind him to brush his teeth as well. He always bathed in late afternoon after working in the yard, so now he does it when I get home because I have to make sure he washes his hair, etc., and dry off the back half (he forgets to do that). And get out his clean clothes (or he will put on the dirty ones!).
I understand EXACTLY what you are saying...and it's taking longer each month, but as he loses a little more in his abilities, I kind of just assume them so he thinks he's still doing more than he is.
My daughter and I pour his cereal and he eats while we are dressing for work, then I put in one of his favorite movies and he sits and watches it for two hours - leaving two hours to get into trouble before I get home for lunch! <grin>
However, now that my grandson has arrived, he can keep him out of trouble altogether! I'm so fortunate to have him!
Switching their routines is almost impossible and when you do, they forget how to do it altogether - at least that is what has occurred with my husband...taking out the trash is something he can no longer do...nor loading the dishwasher. He can barely make the bed any more.
Shoegirl, you are fortunate, as I am, that our employers are understanding (I have to take off for an hour here and there for 1st thing appointments or last thing appointments with his doctors too) while we have our spouses to take care of at home. You might try setting your alarm clock 15 minutes sooner and see if that helps. It did for me. Keep me posted!
Things move in slow motion here too. First it was my Mom and now DH. Seems we have been in slow motion forever. I don't know how you gals work and caregive both. Well, for one thing you are younger than I am so that helps. I used to have much more energy than I do now.
I have to allow an hour and a half mornings for DH to dress, eat breakfast and out the door with cordless shaver in hand. I have to help him dress also. Thank goodness he does his shower in the evening. I am not a morning person and glad I don't have to contend with that. I also have to help him in the shower. He turns the water on but has forgotten to switch to the shower.
I work three days a week. I'm going to make arrangements for J. to go to Day Care while I'm at work. I'll take him and pick him up when I get off at 1:30. I hope he doesn't give me any trouble. We're going to act like he's helping out. Wish me luck. He's been staying home but it hasn't been working lately. He wants to go to work with me. Sounds like a two year old, doesn't it?
Shoegirl, I was thinking of asking you the same question the other day. I struggle in the mornings also. My employer/fellow employees are as understanding as can be expected from people who do not know what it is like to live with someone with dementia. Chuck stays at home by himself. He gets himself up but sometimes he will bring up a problem right when I am leaving the house and I end up being late because I don't want to ignore him. So I am starting to leave earlier and tell Chuck I will call him from work. I do not have a plan for when things get worse. I will cross that bridge when I come to it. Sorry I have no good advice.
Is your employer understanding about the time off for your husband's doctor appointments? Since Chuck is actually my ex-spouse, I can't take sick time. Instead I have to use vacation. ): Right now, Chuck still can drive himself to his doctor. Since he is pretty healthy, he just goes periodically for blood work. However, we have discussed both using the same doctor and I can schedule my checkups at the same time as his.
Thank you all for your responses...I am blessed to have an understanding employer. I am on contract, so I have no paid time off :( However, I did a little extra work at the beginning of the year and was able to "bank" a little time. I am slowly using that up for dr's appts. Today since I was 45 minutes late for work, I stayed an extra hour.
I can tell by lookin in B.'s eyes if he is going to be able to get himself going or not. Unfortunately, I have to be to work sooooo early- 7:15 a.m. I get up at 4:30, so I can go on a one hour hike @ 5 am with my sister...which is very important to my sanity and fitness. And in Phoenix, it's still pretty hot...so I can't hike when I get home from work until it cools off more. So I get home at 6 or 6:15, shower, wake up B. and hope for the best, make his bkfst....it's crazy! I make lunch the night before.
Mary, I know what you mean about picking things up as he loses the abilities...but I seem to be running out of hours in the day. Yikes! What I think I will do is see if I can get someone to come over for 2 hrs in the morning...I've been putting that off as long as I could but am feeling like it's time, soon.
Lizbeth, I know what you mean about crossing bridges...sometimes it's just too scarey to think too far ahead.
Lmohr, did your husband always use an electric razor...I've been thinking of changing to one for B. since he seems to be cutting himself more often.
Carolyn, I do wish you all the luck in the world. Don't think B. would do a day home.
Just discovered this board and it's very eye-opening to realize so many others are experiencing the same problems and anxieties I am going through. My "DH" was diagnosed 4 1/2 yrs ago and is taking every medication known to man (I think), but of course, the disease is still forging on. I work a full time job and had to place him in daycare a little over a year ago when I realized he could no longer be left alone, even though neighbors were ready and willing to keep an eye on him. The daycare was draining our finances (out of pocket totally), so I recently made the very difficult decision to relocate him into an assisted living facility where he has his own room and 24 hr care. He is off and on with accepting this...depending on the day and even the time of the day. We have long term care insurance which should begin to kick in after 60 days..but unfortunately, my DH has wandered a couple of times and this is not a secure alzheimer's faciltiy, so I am now having to investigate other possibilities. The guilt is overwhelming, but dealing with the problems of caring for him by myself was also overwhelming. I am about ready to throw in the towel...if I could. We have been married for 54 years, but as Joan says, I don't even know this person anymore...worse yet, I hardly know myself. Guess I have some personal work to do.
I left my husband alone for way too long - I am just lucky that he didn't hurt himself or burn down the house. He did leave the gas on (our stove has to be lit with a match) once, and I then I started turning the gas off at the source when I left for work. He locked himself out of the house once, and broke in through the back door. I couldn't stop working - mine was our only source of income other than SS. I had no money to pay for daycare and even if I had, the places in our county only offer part-time "respite" care. I couldn't afford a caregiver at $20.00 an hour and I made "too much" money to qualify for any in-home assistance. Finally, some good friends of ours sent a letter to everyone who knew us asking for donations to a "caregiving" account. With that, and a small grant, and a friend on SSI who was willing to work for $10 an hour I was able to piece together care for about 6 months. Then he got so bad he qualified for a nursing home, which MediCal (California's version of MediCaide) was willing to pay for. It was all a nightmare I never want to go through again.
Dewdrop, welcome to our family. My husband is not as far along as yours, and I was fortunate in that I could take him to work with me for a couple of years after diagnosis. (There are advantages to owning the company!) He had been the CEO there, the staff were used to him, and were very kind, keeping an eye on him when I was busy elsewhere.
The company went belly-up, I'm home now trying to put the final touches on the paperwork for corporate bankruptcy. I do need to find another job, hoping against hope I can find something that allows telecommuting, or maybe start up some out-of-the-house business. So far, I think he'd cooperate about going to daycare if I asked, but I don't think he'd like it.
Such sad decisions to have to make.
Let us know when there's something we can do for you. If you'd like, post on our "Where are you from?" and "What are the age groups" threads...
Dewdrop-I have been where you are..I tried to continue working while trying to place my husband. He was too young for a nursing home and they wouldn't take him anyway. He could become violent and was a real escape artist. I had a terrible time finding a place that would take him. I'm a home health nurse who knows a lot of people. The standard statement was "well-he can't be the only one like that". For a while I thought he was as there was no help out there. He got out of the secure back unit of a totally locked down facility while wearing a wanderguard which won't let the door open. I had to hire an aide to stay with him in addition to paying the facility-all the time praying they would keep him. That's enough for now. If you want to know how it worked out just ask-I don't feel like going on just now.
shoegirl My DH has always used an electric Norelco cordless razor. He charges it ever few days and usually uses it in the car or his recliner. No way could he use a non-electric razor.
Glad to hear back so quickly. I just returned from visiting two secure alzheimer's care facilities. Now the big decision is whether moving him from his present "home" will be traumatizing...again. I keep praying that he will settle in..stop trying to escape and be reasonably happy. I could deal with it all if he just seemed settled and content, but guess that's not going to happen with the AD. Other than the long term care insurance, there seems to be absolutely no financial help for spouses with this disease to cope with. I have read in here about "stages"...Where does one find info on that? I really have never been told my husband is in this stage or that.
Welcome to my website. I just returned from a very long day of Alzheimer activities, and only had a few minutes to scan the posts, but I wanted to make sure I welcomed you and gave you some information. If you log onto the home page of the website - www.thealzheimerspouse.com, look on the left side. There are numerous topics full of resources. Click on the Newly Diagnosed/New to this website topic - It is pretty extensive, and #12 gives 4 different links for explaining "stages".
When you get a chance, click on the "previous blog" section - if it's related to spousal issues and Alzheimer's, chances are good I have written a blog about it. Also, check out the section on the left -Need Help? It is "Understanding the Dementia Experience" - the best explanation of AD I have seen. It is my favorite.
We are here for information and support. Hope you will visit often.
Welcome Dewdrop, Sorry you have the need to come to this forum, however, I am sure you will realize you have found friends. I have said many times finding this forum has been a godsend to me.
Welcome Dewdrop. I was frantic when I first came here. After reading and learning so much, I am much more relaxed about everything. Seems every problem we have, some one on this board has been there, done that, got the T-shirt and they're willing to help the rest of us get through it. I come here every day. It's my therapy.
Today J. went to Day Care. I had to tell a couple of lies this morning. He was still asking to go to work with me and help me. I finally told him that the bosses said "No" and I worked on a computer all day and he didn't know how to use one. I picked him up at 1:30 when I got off. He told all the folks that he enjoyed meeting them and they were really a nice bunch. Good. On the way home he told me that he didn't even remember me taking him in the morning and while he was there he thought he woud never see me again. That was a little heart breaking. I keep telling him that he'll just go three days a week while I'm at work. I have to keep repeating it and I know it still doesn't sink in. The main thing is if he'll be happy going there.
Carolyn, I know that feeling well. I finally admitted my hubby to an assisted living place after taking him there for day care for a little over a year while I worked. He still says he doesn't know where he is. If he would just settle in and be happy, or at least at peace, I'd feel so much better. He has wandered a few times and it appears I may have to move him to a more secured facility...another adjustment and more expense. The expenses...medication, care and so on are draining us and I am 73..still working a full time job to make it. It gets so overwhelming doesn't it? Does your J. just cling to you constantly and panic when you are out of sight? That may be a characteristic of the awful disease, but very hard to cope with. Guess we all need to pray for each other as well as for the afflicted spouse.
Dewdrop, yes, J. wants to be with me all the time. He has been staying home alone while I worked . I work half a day, three days a week. Monday was a bad day. He went back to bed before I left. While I was at work he woke up and didn't remember where I was. He went outside in his briefs and t-shirt looking for me. One of the residents saw him and came to get me (I work in the office here in our mobile home park). That's when I decided to get him into Day Care. And, of course, his being outside in his underwear went around the park like wild fire. One person even heard that he was naked. A small community can sure be gossipy, can't it?
Welcome Dewdrop I also just found this wonderful website but everyone here makes you feel so at ease from the very beginning because we all have this AD to cope with as best we can.
Briegull..how would that help? I mean the elderlaw attorney..I would gladly do that if it would help. Also, for those who have been reading my postings and replying...thanks! I got home from work this evening and had a message from the facility where hubby was staying, saying I had to come and bring him home tonight, and would only be able to bring him for daycare from now on. He's here now and it's the weekend...need to wait until the first of the week to make other arrangements. Just no end to it, is there? Carolyn, yes I know...I live in a park as well and all the incidents with my husband were out and around almost as soon as I knew. When I talked about possibly placing him, one neighbor stopped by to see if he was home or in a facility. When he saw that hubby was still home, he said "I thought those were just stories...I knew you wouldn't do that to him". Boy, did that make me feel rotten!
>The expenses...medication, care and so on are draining us and I am 73..still working a full time job to make it.
Dewdrop, elder law attorneys know what financial arrangements you might be able to make. NOT estate planners. DO searches on this site to find earlier discussions. I'm not one, am a recent convert to their virtues. But going to one made me realize I did not have to spend all our money taking care of him, especially not in a NH. Also, check out what the AZ association in your community allows.
For the guy who says he knows you wouldn't do that to him... ask him if he's available to maybe watch him two days a week and find friends to help with the other days.
Shoegirl, when I have the time and energy the night before, I shower, make lunches, pack up the car, and lay out our clothes.I also try to get up @ 4:30 in order to have a little time to myself for coffee and the paper. HOWEVER, those type mornings are few and far between. MOST OF THE TIME I've set the snooze button one too many times, forgotten to make lunches or pack the car, nothing fits and I have to pull something out of the dirty clothes basket and run it through a quick wash and dry, DH has wet the bed and soiled himself, have to get him up, cleaned and changed, pull the sheets off the bed and throw them in the wash and remake the bed, try to get DH back into bed for a few minutes so I can get things ready uninterupted, which never works so he's following me around right under my feet as time ticks away and I'm running around like a chicken with its head cut off'. I get him dressed and groomed as much as he'll let me, feed him his meds, make and hand him his protein shake, turn off the tv, lights, heat/air, unplugg coffee maker and hair rollers, lock up the house; I finally get us out the door and in the car, speed to the daycare and continue speeding on to work, but I always end up being late nonetheless. So yeah, how do I make it work? Obviously I don't!! Patt K.