My wife was diagnosed about 3 years ago, but the Dr. feels she has had AD for a lot longer maybe 5-6 years. I have been able to handle the household tasks, shoping, paying bills ect, but three weeks ago I noticed a big change in her almost overnight.
Our usaul routine is to get her up in the morning shower her, blow dry her hair, dress her and then put on her makeup. I have learned the art of makeup and hairstyling and getting pretty good at it.
now my wife will give me a hard time getting out of bed and it is a fight every day trying to get her into the shower and so forth. At the same time I am getting a lot of anger from her and no matter what I try and do for her it is a fight.
Currently she is on Namenda, Lexapro, Excellon patch and seroquel . The Dr. increased her Seroquel to 50 mgs 2 weeks ago and it has not changed anything. As all Caretakers I am overtired and becoming very frustrated with the constant arguing, workload and feeling alone.
Now that I have vented somewhat my question is has anyone else having similar problems and if so how are you handling it? I will entertain any help out there.
I suppose it could just be the start of the next stage and there is not much I can do.
I had similar problems with my wife's scary mood swings two years ago. Her doctor prescribed the antidepressant Paxil to smooth out her mood swings. It worked! She has had no wild mood swings since. She is now somewhere in stage 6 of AD. My wife takes at bedtime Aricept (10 mg), Namenda (10 mg), Seroquel (25 mg) and Paxil (10mg).
I can sympathize with you. unfortunately sometimes the medications themselves can be the culprit of new behaviours. the added new dosages may need time to adjust if you have concerns speak to her doctor. i found in our case less meds were best and we have taken husband off namenda/reminyl/seroquel/zyprexa. all these added unwanted sideeffects over time. he is i think early 6stage. like you say its not uncomon for AD patients to hate water and grooming. try later again if she refuses they usually will be more agreeable at a later time. my best to you, divvi
The only way I can get my wife to shower is to go in the shower with her. I tell her it is so we can each wash the other's back. I succeed in this 2-3 times a week. I pick out her clothes, but she can still dress herself - mostly. I do have to remind her to put on a bra. Fortunately she has not had any major mood swings. The main time she gets mad at me is when I have to get a "baby sitter" for her, so I am taking her with me most of the time.
I'm not sure this helps much, except that we are all having similar problems, only at different stages.
Last summer I saw a big change in Ralph. He did not want to shower and would get angry at showering and at other things as well. I had him in a day care two days a week and he began getting angry with his caregiver. She could not take care of him because of his anger and agitation. This time last year he was on a pretty smooth road and he seem to change so much during that time. I have him in a home now and have seen a very rapid deteriation. He was in a behavior facility the last two weeks to get his meds adjusted. He can no longer walk on his own most of the time. He is in a great home and is well taken care of, for which I am thankful. I have never seen such caring people and he knows they care. He no longer knows me when I visit him, but I usually get that wonderful smile from him. He knows I am someone special, which does help me.
He was diagnosed six years ago, after a couple of years trying to get answers to what was wrong. I have read that "you meet one Alzheimer's patient you meet one Alzheimer's patient". They all progress differently from what I understand. It is difficult and my heart goes out to all of you, as all stages have their own challanges. Darlene
Bless your heart for doing such a good job taking care of your wife. Personally I think you are doing more than you need. I don't know if everyone needs a shower every day unless they are very active or go out and roll around in the dirt. Older people, especially, don't need to bathe so often because of their dry skin. I'm very active and though I shower daily, I don't wash my hair every day. Perhaps you could buy some baby wipes to get her to use in strategic places and just have a good shower a couple of times a week. Have you tried dressing her in sweats or jerseys--warm up shirts and pants? They are much easier to put on--no buttons, elastic waist, etc. Also, what are you getting her up for? Does she have lots of visitors? I personally love to sleep late. I'd probably try to kill anyone who tried to get me out of bed before I'm ready and I don't have AD. Is there any reason she can't sleep longer? I know my husband who has AD sleeps a lot during the day because he can't sleep at night. I've hear that a lot of AD people can't sleep at night. Don't work so hard. It will wear you out in no time. I know from experience.
If you don't have to go somewere with your wife in the morning, let her sleep. Also don't argue with her, it just makes everything worse. For you and your wife.My DH would take tree or more showers a day last year, then he got into a stage were dead horses couldn't drag him into a shower. I got him to take at least one shower a week, and that was a battle. Now he takes about 3 showers a week on his own again. AD is a rollercoaster ride. Just try to go with the flow and keep everything as calm as you can. My DH would keep me up all night for a few month, and I just knew that if that kept up, I would go crazy. Well he went out of this stage too. Now he sleeps almost all night, and he wakes up in the morning has breakfast and goes back to bed and sleeps another couple of hours. Then the rest of the day he is awake.
My husband has had AD for about 6 years now. I also had the problems with showering, changing his clothes, well, just about everything. I quit my job to become his 24/7 Caregiver, but, when the wandering started, I had to get Home Health to come in and help us out. After we chased him down different roads numerous times, I knew this was getting out of my control. Believe me, I hung in there for as long as I possibly could, both mentally and physically. I used Home Health for approx. 6 mos., but, when the agitation and aggressiveness started, I had to then make a very tough decision on what to do.
In May of last year was when I noticed the rapid deteriation. I believe that was when he entered another Stage of the disease. He is now in a Home, but, is doing quite well. Smiles alot and still knows who I am, but, I do not know how much longer this will last. They have all kinds of activities for them to do. I go everyday and try to feed him at least once a day, if not more. He cannot walk any longer and is in a wheelchair, is incontinent and has to have all foods pureed. I have been very blessed to find a very wonderful and caring atmosphere for him. The home he is in gets them up in the mornings and tries to keep them as active as possible. They got the Wii system and they love playing that. They put them down for naps, etc., he has a pretty balanced day, lots of activities, etc.. If he does not want to get up some mornings, they let him sleep in, so, that works for me. My DH no longer talks very much, but, when he does not want to get up, the nurses say he gets pretty fiesty. They laugh when they tell me this, as they are professionals and they know how to handle him. He is over 6' tall and weighs about 185 lbs., so, it was very hard for me to transfer him and bath him. My husband is now a two person transfer, one person can no longer transfer him from bed to wheelchair. He tries to stand up, but, can no longer walk, his arms are moving around, so, for safety, the NH has to have two people at all times. So that works for me. He is such a sweetheart to be around, but, he is still very strong and is a very hard person to transfer.
There are so many Stages and all patients go through them differently. So really the journey has been day by day for me and I still approach it this way. In the last 6 years of this, I have went through so many challenges, emotions, etc., that I have trouble remembering them all. It is like a rollercoaster ride that will never end. You just do the very best you can for your love ones.
dbertol210: I am w/Bebe on some of what you wrote. No one needs a shower every day nor have their hair washed. I used to get in the shower w/DH but once a week was about all I could handle. I know a man who told me he'd just pick up his AD wife, screaming and kicking and put her into the bathtub. But we ladies can't easily do that.
Try to start letting things go. Just do what has to be done. If the house is not neat, so be it, if you are overwhelmed about shopping & cooking, all the markets have good prepared food, or there is always frozen. Of course, you have to pay bills, but a lot of thing don't absolutely have to be done. Maybe you can get some household help. You don't tell us too many details but you just can't do everything, be her 24/7 CG and not burn out.
If meds don't help, there's not much you can do about the anger except to agree w/whatever she says, no matter how outrageous and always say it's your fault and it won't happen again. Don't argue, don't reason, don't explain, it will just cause frustration for both of you.
I think you are doing an admirable job--just trying to do too much--and putting on make-up--that's really swell.
I want to thank all of you for your helpful comments. I have asked my wifes Dr. to see us on Monday to go over this new change in her and look at the possibility of changing her meds. It is so good to hear your comments, because it makes me realize I am not alone in this battle with AD.
Some of you commented that perhaps I try to hard and your probably right, but it is so difficult not to want her to have all the things she always valued. My wife always looked like she had just finished grooming herself and I have been trying to give her the look she always had. I know I over do it, but I want her to keep her dignity as long as she can.
She has been a wonderful wife and it is hard to come to the understanding that things will never be the same. My backround is Medical and I know better, but it is so hard to let go and face the truth.
My daughter is a great help to me, but has two little ones that keep her busy and I try to not ask her for two much, but she gives me as much help as she can. My daughter has told me some of the same things you all have mentioned and that I need to let go a little, but it is hard.
She takes my wife on Fridays, which is he day off from work and I get a few hrs for myself. I am pretty close to bringing in some help from the outside I just have to be honest with myself that the time is here.
dbertol210, I see you say your background is medical, so you know what is coming. Mine is the same. Often, when my wife asks me what is wrong with her I will tell her that she is better off not knowing all the details, and that, unfortunately, I do know what is coming. Saying this doesn't really upset her since she has forgotten all about it in about 15 minutes. Also, there is a BIG difference between being the caretaker and the PCP. The caretaker - us - is with the patient 24/7. The PCP sees him/her maybe once a month for 15 minutes, so really cannot get a good feel for what is going on. It is up to us to try to get this across to the PCP. I support you in trying to maintain your wife's dignity as long as possible. It's hard to watch your loved one deteriorate and anything we can do to maintain some dignity and feeling of worth is worth doing. Fortunately, my wife has never used makeup, so I don't have that to worry about. Keep up the good work. We are all with you.
When I read how lovingly you care for your wives' I must tell you it brings me almost to tears. I admire how you want to maintain their previous life style while maintaining their dignity. And I am frankly amazed that you so clearly know what to do. My dear husband has never been a helper around the house and I don't believe he's purchased his own clothes in over thirty years. I can't imagine how he would handle things if our roles were reversed. But I am pretty sure I would be dressed in mismatched clothes and forget about make up!You are both doing an amazing job. My guess is that every day your wives feel the love, even if they are no longer always able to show it. dbertol210, I do definitely agree with the others, please let some things go ... don't think of it as lowering your standards... think of it as letting your wife live a more relaxed life style. I wish you husbands all the best ...you truly face unique situations
You gentlemen are wonderful husbands and caregivers! Your wives are truly blessed to have you. I truly understand about pride in appearance. And routines. My husband took such pride in his appearance until about 6 months ago. I try to make certain he baths, brushes his teeth, etc., but the shaving is beyond me. I'm so afraid I'll cut him or hurt him. He prefers a blade shave even though he has an excellent razor. I'm afraid he'll have to adjust to the electric razor when he can't manage for himself any more. Ladies, do you shave your husband's beards, or can they still do that themselves? My husband can, but doesn't do it unless I tell him we are going out to dinner! So at least twice a week we go out! <grin>
Mary, I can't imagine trying to shave my DH. Thankfully, he still does it - and has the little booklet with his reading material that tells him how to operate it. I can hardly believe how many times he reads that! I agree - you men sound wonderful. I don't even put makeup on myself, so can't imagine how you guys are managing.
My DH has not shaved himself for about six month. He used a blade, but I went and got an electric razor and I am getting to be an expert at shaving him with it. At fisrt he complained that he didn't like the razor, but he got used to it. I would not dare shave him with a blade, I know that I would probably cut his face to pieces.
My DH also only gets a shower once a week, and I'm not positive of that. He insists on doing it himself, and locks the bathroom door. When I go in, he is totally dry.... not even damp. So I know water never touched his body. Thank Goodnes we sometimes go to the Doctor, he will shower when we have a dr's appt. We just finished with a horrendous week where he got new teeth. He couldn't put them in, couldn't eat, had pain.... Finally, they are adjusted so he's comfortable, but what's next.? He has problems with his shoulders, so I do most everything, then he takes it upon himself to move the rocks around the garden, and winds up in pain, and doesn't know why. Yesterday, he went into a screaming fit because I had put some things away, and didn't tell him. Tell him what??? I've gotten a little better though, I left the room, and then came back in and asked him if he'd like a snack on the deck, it was such a lovely day. He pretty much forgot why he was shouting at me. I just have to learn to walk away, Although I was crying when I did that, I was able to get myself composed by the time he came out to sit with me. It's going to be a "bumpy Road"
My DH is in stage 7 but up until last week he was able to stand with assistance. I cound get him to step into the tub for a shower. This was nice especially when he had messed himself. Much easier to clean him. I use both an electric razor and a blade to shave him. The shower and the shaveing wasn't as hard as getting his false teeth out to clean them. I was and still am afraid he is going to bite me.
Now he is on hospice and the aide has the previlege of bathing, shaving and cleaning his teeth. She also changes his clothes. It's too bad she only comes 3xs a week, but other than changing his clothes and cleaning his teeth the other two can surfice at three times a week. It's especially nice she comes because he is now unable to get into the tub.
You men are great to take such good care of your wife. I have wondered how my husband would do if the roles were reversed, but I sure like to think he would do as good as you do.
As I said earlier my wife suffered two seizures within a 15 day spread. Her neurologist put her on Keppra in addition to the Aricept and Namenda she has been on. She is in stage 6 and knows me as her husband and my sons as the boys but has great difficulty recalling our names now. Everyone tells me they can see the rapid decline in her condition and I can too though I always try to look at the situation as half full instead of empty. I have a caregiver/CNA come in to help me 7-4 M-F. However since her seizures she is now totally unstable on her feet. She has to have someone with her 24/7 now.I have a time just getting her from her wheelchair to the toilet. Showers take me and the caregiver to get her on the chair hold her from falling to bath. I have decided to call Hospice to see what they can do to help me. My sons now even say that it is getting to be to much for me to care for her and are worried about me. At her last Dr. visit he said she was at the point now of needing total care and gave me a letter stating so. He suggested putting her in a nursing home because her level of care needed was beyond what ACLF's provide. The rate of her progression has been so rapid I thought in my head that I would not be at this point fo a while yet. Now I have to face the music of the situtation and make the tough heart wrenching decisions. I have decided to sit and talk with my sons reguarding care options after I talk with Hospice. If my wife did not have any recognition of her home surroundings or our faces it would be one thing, but since she does,.... I feel so guilty even thinking about the possibility of placement somewhere. I don't know the cost to increase care at home or if having the boys seeing there moms continued deterioration at home is the right thing to do vs placement. I only know that we have reached a point where we/I have to do something to try and retake the upper hand in this situtation before it takes us all down. I hope I am expressing myself clearly? I hope my meeting with Hospice this week will give me some options. Any advice here is welcome. Thanks. Tony
My heart goes out to you. I wish I had answers for you. My feeling is that with placement, your wife can get the care she needs from professionals who are not worn down from emotional 24/7 caregiving. You will still be involved in all of the decisions, and you will visit often. Your boys are worried about you - they need you, both physically and emotionally. Although it will be difficult for them to see their mom in a nursing home, I think it will be worse on them to see both of you deteriorate at home. Their mom from her disease, and their dad from being worn down from caregiving.
From what I have heard, Hospice is wonderful. They will help more than you ever thought possible.
Oh Tony, I am so sorry you are facing this decission right now. You do have to think of your boys and yourself. There comes a time when it is not possible to take care of our LO at home. Guilt should not play a part of it, but it does. I don't think we can ever be fully prepared for what we have to do for our LO. Hospice is wonderful, but not a full time solution. I could not take care of Ralph at home now. He can hardly walk and is totally incontinent. He gets loving and good care where he is now. Much better than I would be able to provide. I have regain some sanity and am able to visit him and I am more relaxed. He knows me as someone special, but not always that I am his wife, but I have come to terms with that fact. I still get that wonderful smile when he sees me. I am lonely, but adjusting little by little. It is a decission only you can make. Hopefully Hospice can help you for a while, but will probably need more help. Take care of yourself and know that what ever you decide it will be the best for her, yourself and the boys. I will be thinking about you and God bless you.