Hi everyone, Some of you may know that I had to place my dh in a nursing home. Since breaking my ribs, I could no longer help him. He was sooooooooooooooo much worse this week. Kept falling and getting hurt (bruised head and cut his leg) and I had a hard time helping him up. Was up all night and day. The only one tired was me. We all think we have done all the right things i.e. checked out the nursing homes, talked to people in support groups about their experiences in local nursing homes, etc. Well, when the time came, the nursing homes I applied to couldn't take him. The VA is paying the tab so they offered me 2 out of my area- about 45 min away. I agreed to let them try and in the end there was only one who was willing to take him that day. I knew nothing about it, The VA social worker had never been there but said they placed alot of vets there with no complaints. What choice did I have? I figured the worst case senerio, I'd take him home if I didn't like what I saw,I'd take him home. My daughter and her boyfriend went with me. The building was very old and not in the best of areas (a major city in Ct) but, I took him in. He was severly agitated and pushing, screaming. Woke up that way and meds were not working for some reason. When the receptionist saw him, she immediately called over a staff member (thank God he was a big strong guy) to take him directly to the dementia unit. Once we enter the locked unit, I saw a very serene situation. Dh was still fussing but the nurse came right over. She was kind and very soothing in her speach and manners. One by one the aides came in with the same mannerism and introduced themselves(to which my husband responded with a look like-so what?) They immediately brought him a tray of food (it was dinner time ) and the food looked and smelled DELICIOUS!! Steak, peppers and onion on a small sub roll with correctly cooked broccoli. He ate very well and after a while, I left. I told the nursing staff that I was leaving them my prized possession and was assured they would take good care of him. Ten minutes after I left, they called to say he fell and cut his head so they sent him to the hospital for stitches!!! Apparently they had him at the nurses station and a fax came in. The nurse turned to take the fax and down he went. They felt sooooooo bad. I understood. He fell three times this week with me. Since then, he has been fine. I am giving him till Monday to get acclamated and then will take his 86 year old Dad to see him . Yesterday was my first day without him that I didn't have to live by the clock or worry about him. I have transferred that job to the nursing home. I am fine. I knew I would know when the time was right and I think God helped me break my ribs to move me along a little quicker!! I feel like a great weight has been lifted off of me. Now I can take the time I need to heal and maybe help Dad with his upcoming surgery and Mom in the nursing home. Mostly though, I am going to stop and really smell the roses. Get involves with planting my garden and yard and enjoy my pool that I haven't used in a year because I couldn't leave dh. Thank you GOD!!!
i can relate to what you are going through although it was hard to put my dh in a nursing home one week ago i too can now smell the roses, i get to go out and do things i haven`t been able to do in 3 years, i get to enjoys my grandbabies again, visits to the nh are getting easier as i know he is well taken care of, i thanked GOD for guiding me in getting him placed in a nursing home in three days, where i live it takes at least 6 months to get someone in. so feel good that he is safe enjoy the light shoulders and by all means smell them rosessssssssssss. enjoy your visits o yes my dh fell his first night in the nh.
We all wait too long. I am just now adjusting to DH not being here. I keep thinking I have to hide things that he can't have. Then I remember, someone else is worrying about him now. I'm adjusting. It will be hard for a little while Kathryn but you will survive and both of you will be better off. Hope your ribs heal very fast. Much love. Maggie
Kathryn, I want to add my hope that you heal quickly and that you are at peace. I also hope that you will continue to realize that you did the best thing for both of you. (((HUGS)))
I have been reading these blogs on placing DH in a nursing home. I am taking the steps but am not sure it is time yet. My DH has gone down hill rapidly since the first of this year. He is incontinent both ends. I am working full time and taking care of him which is killing me. I was putting him in daycare but he has Sundowners in the afternoon and was getting aggitated and I was warned he may get kicked out if he were to hurt anyone. So, my company (bless them) is letting me work from home in the afternoons so I take my DH in the mornings to day care and take him home with me while I try to work from home. He moves around a lot in the afternoons. My biggest issues are that he is incontinent and I have no freedom. I can't ask friends to stay with him because of his incontinency although they have offered. I tried to go to Walmart yesterday for 1 hour and 15 minutes because I had to get a few things. When I got home he had his pants down and had gone #2 on the leather couch and was lying in it. There have been several times I have left him for an hour or two and that seems to be the times he does #2 and makes a huge mess on the floors and on himself. I love him dearly and don't want to place him but I guess I feel I need to be ready. I have an appointment with a Medicade Planning Specialist next week. There is no way I can pay nursing home costs nor costs for help at home. It has been suggested I call Hospice. Do you think I am doing the right thing? I feel like I am being so selfish. I don't want to do this to him but not sure what else to do. I am having chest and stomach pains from all the stress. I get in the shower with him when he showers and help, I do most of his dressing. He brushes his own teeth and I help him shave. All this is new since about Jan or Feb. He just started wetting the bed. If I don't get to him about every 2 hours, he urinates on the floor. He wears pull ups during the night and that helps. He still knows who I am but remembers nothing from 5 minutes ago. He is blind from his Alz being in the posterior part of his brain. He walks around the house but I keep the doors locked as he was found in the neighbor's yard one morning at 4:00 am. that was the day I decided to put him in day care and not leave him except for maybe an hour at a time. I feel guilty as I lock him in the house. I know I am rambling but feeling better from just talking about this. You all are the best!! Susan in Florida
Pompansusan - it sounds like it may be time. When things get to that point here, it will be time. You have no reason to feel guilty. I know you will get other responses here with more experience than me. Good Luck
Susan-locking a blind confused person in the house alone is not a good solution. If he started a fire or slipped and fell he could be in deep trouble in a matter of minutes/ I do understand where you are coming from. You need to work and can't afford placement or home care. We can send trillions of dollars abroad to people who hate us but forget our own at home. Does deHormle have a social worker who can help you get your husband on medicaid ASAP? Some will disagree with me-but I fail to see the reason for you dying along with your husband. Chest and stomach pain is telling you something.
Susan, if he was injured in a wreck, sick with cancer, or heart or other disability, you probably would not think twice about putting him in the hospital. The difference here is that he'll leave your home to be transported there. He's sick, and he needs professional help. Do those words make you feel less guilty. Think about the fact it is something you are doing FOR him and not TO him. Hugs. xoxo
Susan i agree its time, he cant be left alone and i understand your dilemma. start medicaide proceedings asap. and susan bless your heart and his, you are the first to rival my crown for poop queen. i dont want to give it to you under these circumstances. i hope you get him in placement soon for both your sakes. hugs to you BOTH-divvi
Thank you so much. I feel better. I know I shouldn't lock him in the house and have only done it about 3 times. I usually just keep the door unlocked so he doesn't lock himself out if he gets out. He doesn't seem to want to go out but Ithought that before when he went next door. Speaking of next door, I lay down for a few minutes to get some rest as it has been a stressful weekend with trying to get some work done for work as well as personal stuff. My next door neighbor came over to borrow some ice and almost tripped in urine that was in the kitchen that had happened since I lay down for 15 minutes. I had asked him if he wanted to go to the bathroom. I know I just need to keep taking him every two hours - I am learning this all the hard way. Anyway, thanks for your encouragement. Poop queen - that defines me. Not sure is deHoernle has a Medicade program - haven't gotten that far yet. Spent a while this afternoon getting all the paperwork together that the Medicade Planning Specialist needs.
This has all come on so fast - hard to believe he is ready for nursing home care already. Thanks again. Susan
In my situation, I have learned that if I ask my DH a question that would have a yes or no answer, he'll always say NO. I ask if he wants some ice cream?.."no" is his answer...even though he loves it and would eat a bowlful every hour on the hour.
Maybe that's what's happening with your husband Susan. Instead of "asking" if he needs to go...say, "It's time to go to the bathroom" and just see if it works.
I'm often reminded that during his last ten years of life, all Joe Kennedy (Pres. Kennedy's father) could say were two words: "No" and "Dammit". Sometime I feel like saying "No,dammit" myself, and I'm not brain injured or AD. But that wouldn't be "nice", would it. awwwgggg!
Pompanosusan – Please don’t say “I don’t want to do this to him”. You are not the one doing this to him. This awful disease is doing this to him. It sounds like it’s getting hard to keep him safe, and trying to care for him is destroying your own health. Please do not feel guilty. You are having to make a heartbreaking decision about your husband. But remember that that doesn’t mean it’s the wrong decision. Everybody has limits, and it sounds like you have just about reached yours. We don’t want this disease to claim you, too.
Susan: Let us encourage you to place DH ASAP, keep working on it. Most of us who have done it will tell you two things: (1) It was the hardest thing we ever did--broke my heart, and (2) we waited too long. Realize that it takes a full-time professional staff to care for someone w/AD and there are other people who prepare meals, do laundry, clean, etc, and they all go home after their shift to a good night of rest. One person, all alone, simply cannot to it all w/out dropping--and then what? We support you.
Susan, I agree with the others, you also have to think of what the disease is doing to you. I was told that very same thing today by our daughter. I have taken care of my husband for 9 years with this dreadful disease, he cannot help what has happened to him and neither can I. Just because you place your DH does not mean that you will stop caring for him, you will still be his advocate, caregiver etc, you will just be doing so in a different location.
You have to be strong for him but like our daughter said to me "Mother you also have to be strong for yourself" there will be nothing left of you if you do not think of yourself also, don't let this disease kill both of you. It is not fair.
Thank you so much for standing with me....and caring. I read all your stories and don't know how you do it. I know that God gives an extra measure of grace when we are going through things. If we knew in advance what was going to happen, we could never face. We just need to live one day at a time. I am with all of you and even though you are going through so much, you are there to encourage me.
I do know better when asking a question. My DH had just urinated on the floor before I went to lay down so believed him when he said he didn't have to go again. Normally I ignore his answers and he will go and really need to although he says no. But, this time I was so tired I just believed him but he urinated again within probably 1/2 hour. Oh well...my neighber is very understanding and even offered to stay with him if I needed her to. With his incontinence I hate to ask any friend to stay with him. Anyway, thank you all for your help. Jane, maybe you should think about yourself if this is affecting your health. 9 years is a long time but hard to let go - hard - I understand. My DH hasn't even been that bad until just this year but what a change!!! He was diagnosed about 2 1/2 years ago but it was there longer. This is the worst disease!! He is not even my husband anymore. I pray a lot and God is walking thru this with me. I don't know what I would do without Him. Susan
You are absolutely right Susan. As I said earlier, they will always say "no". Seems like it's all they have left. The right to say NO. I just do not ask, I TELL. To others it sounds bossy. I learned from the wonderful book "Learning to Speak Alzheimer's" (see Joan's book list) that we should use fewer words .. and NEVER ask questions that can be answered yes or no. I bought that book two years ago...and I re-read it often. As his disease progresses, different suggestions in the book come into play. Give them only two choices and visual choices are better than verbal choices.
Nancy, I HAVE to ask yes or no questions, because my husband can only say yes, no, fine and good! <grin> However, he's been on a "yes" kick lately! <grin> We just ask him so he'll feel included in conversations.....but when we are going somewhere, I take him to the bathroom, and he'll go. As soon as we get home, back to the bathroom, and he'll go. He's pretty good about going while we're at homem - for the most part.
And he has now past the stage where I was giving him choices on the menu. I just order his favorite meals from the different restaurants we normally go to. He never tries to correct me, so he must agree! <grin>
Susan, to place him in a nursing home is helping him and helping you. (((HUGS))))
Question: what do nursing homes do about the flagrant incontinence? I cannot imagine that they allow people to go behind the potted plant or on the sofa.. Is there some med they give that regulates people?? Or do they just medicate them out the way divvi did when her husband was going through a nasty stage?
Briegull, the staff does their best to toilet the residents every two hours and that takes care of some of the problem, but the men in particular have a tendency to "whip it out" and go wherever and whenever the mood strikes them. There is a lot of cleaning and disinfecting that goes on in those places.......
Everyone is incontinent in my husband's facility I have never seen any man "whip it out" because the staff is so vigilant. There is also never an odor. This is why an all dementia facility really works.
Doneit...in the AD facility I am familiar with, the residents have their own rooms and bathrooms and they are all up and moving....so, there were a few incidents......but the place was always clean and sanitary......accidents do happen.....
I visited one facility that had the "look", chandeliers, oriental rugs, etc. -- and met with the marketing staff.
I had an appointment to come back later to tour the Alzheimer's Care building. Because an earlier appointment was cancelled, I just showed up early for the tour.. and just went over there (separate building) to wait for the Marketing person. My eyes watered from the urine smell...and the building was NEW. I don't know what they do about that., but this facility had about ten residents and was less than 3 months old. I mentioned the smell, and you know their reply..."Really??? I don't smell anything!!!" I wondered the same thing all of you asked,.. how do they keep people from going potty wherever they want to?
NancyB Where was the staff? When a resident wanders out of the day room and aid is right after them to check on what is going on. Sorry-no chandeliers or oriental carpets.
The separate Alzheimer's Cottage had an entry foyer, where I waited, next to the interior double doors (locked) that opened into the big resident room. I could smell the urine in the foyer where the little love seat and guest chairs were. I could smell it there!.. It seemed the same, no more, no less, when we toured the main room, dining room of this property. It must have been in the air return/circulation system, is all I could imagine. Maybe someone peed in the a/c return vent itself! Ya never know!
My intention in mentioning the oriental rugs and chandelier's was to reinterate that NO PATIENTS benefit from those things. There are there to impress family members who come in looking for "A Place For Mom".... Believe me, I look beyond those frills. Point made that they had not addressed the smell in the Memory Care Facilty. Fire restoration companies have a minty smelling product that looks like a 'gel in a paint bucket' that takes offensive smells out of anyplace. (Decaying bodies, skunk, fire and smoke, .. ) I would certainly think that they would know about such a product and would use something like it just to make the atmosphere in the residence more pleasant.
Forgot to mention, they put the gel mentioned on above post in a disposable aluminum baking pan..Say about 4 cups of it.. and place it inside the air return unit. All air passes over the gel and when it comes back out, it smells "minty fresh" as they say in the mouthwash commercials.
Placed my husband 05-11-10. He is in a alzheimers unit in Wi. Felt guilty for placing him . He was still continent but starting to get combative. Applied for title 19 and it was approved the day I applied. He doesn't know he's been placed permanently. He thinks he's being rehabilitated after a hospital stay. He has a bad heart which is not being treated aggressively because of the dementia. He's 82. I'm 55. My step children agreed with me our daughter wasn't pleased. I think she's starting to see it was for the best. I do feel a burden being lifted. I know I would not have the patience to care for him. He is verbally abusive most of the time to me. They have a donot dnr band on him.
Hello my dear friends- I have not posted in a very long time- but I read all posts several times per day, and once again, it is as though I am reading my own words. Only each of you can know what this stealing disease is. The grief, loss of finances, jobs, isolation like jail. I have been told to "deal with it, just give him vitamins, he's cognitive." Per Kaiser Geriatric Specialists, my 63 year old husband is Stage 6D. I am 59. Popamosusan, YOU wrote my exact story!! I also, shower, shave, dress, feed, my almost blind husband. I always said I would never place him- now I must, but Alzheimer's units are few and all have waiting lists. We have Kaiser and VA, and Kaiser states that it MUST be a Kaiser contracted facility. Since all assets are gone now, Medical is hopefully approved. The Va has kindly paid for 2 years Mon-Fri, 9-3 Daycare, but he is total care and starting to scare me at times. When he is home I have no peace. I have looked and looked and regualr nursing homes won't take him as he is a fall risk, cannot see, etc. I know it will be like a death when I am able to find the right place- but I will get through it. I have to, as I do not want to lose anymore of "me." Bless all of you. Please pray I find the right ALZ unit.
Thank you, each one of you. Alz facilities are far and few between here in San Bernardino County, and Kaiser states any place MUST be Kaiser contracted- even though Medical has to pay for it. How did I ever get to this place? The place of even considering placement?? I have always spoiled my sweet husband- and do so now, but I do not want to miss going to a few special things, not being able to take a walk, the angry sundowning episodes, I want to go back to work. I vowed I would never even consider placement, but now the answer is, YES. I am in limbo, I speak and live Alzheimers every moment. Would this be an emotional divorce? It has been 5.5 years. I am a prisoner. I toured a nursing home this morning- no smell, has a reputaion of being strict regulated with employees, and I like that. Even though it is Saturday, I left messages with the Social Worker at Kaiser, for Monday. I am on an extended leave from a Psych Nursing Home, so I know what to look for. Think of me please, because if I do this, I know I will not stop crying- and I know each of you understand.
ckkgram, I hope the facility you found works out for you. I'm sure you've read here before that by the time a spouse is placed, it is usually long overdue.
Bless all of you! This morning, I am 2nd guessing myself- I keep wondering how can I let someone else care for him, how can I sleep without him, I couldn't sleep last night, I'm afraid, we have always been like "fish out of water" without each other. But then there will be today, today when he will sundown, today when I feel like a prisoner, today when I will feel I cannot get him placed soon enough. I thank all of you.
Last night I was called by the nursing home they were sending my husband to the hospital. He was combative, wouldn't put clothes on and was going into the other residents rooms. They were afraid he would hurt someone so they sent him there to check him for uti or any other problems and if they could regulate his meds. If not then he has to go to psych ward ten miles away in another city. Then the nursing home called me today and said they can only hold his bed for 15 days that's all medicaid will pay. It's 260.00 a day to hold his bed after that so if they can't get him regulated, he might have to go to another home as I don't have 260.00 to hold a bed. I thought I would be able to go back to work and I guess I'll have to with all this going on. I am so mad at this disease. Please pray that they will get him calm so I don't have to change homes.
porkhck, Sending prayers to you and your husband. I just had to admit my husband to a behavior hospital this evening. I also cannot understand why this disease must be so hard...if it has to take their brains, why can it not take the combativeness.
Sorry you're both having such a hard time. My husband is early in the disease. I cannot imagine what you are going through. Hope things look better tomorrow morning.
My thoughts and prayers go out to both of you. I have the preliminaries going for long term care- I am ill just thinking about it, so I understand how you feel. I cannot sleep, and I wonder if this is the right thing to do. Wouldn't you know it, for the first time in months, he seems good, still helpless but not as confused, and now I feel so guilty for even thinking of placement, but then the little bit of being sort of lucid shall pass, I know. Porkhck, I know my husband will be the same as yours- I tried to sleep, but I just felt like screaming- I want my husband back!! Kadee and Porkhck, I hope all goes smooth for each of you and your husbands adapt. Bless you both. Just the thought of not being with my husband is so very painful.
I keep second guessing myself. There were times I was wondering if I was placing him to soon. But after this last combativeness I think I did the right thing. Look at all the homes in your area if you get the chance and what kind of payment they take. The one he is placed in now the staff is trained in alzheimers and is better than the one he was in before that. Still you feel so bad because they won't be living in their home anymore even though my husband didn't believe we had lived here 30+ years. I talk to myself as if I'm talking to him and say how sorry I am that this happened to him. I ask God why does his life have to end like this. He has a bad heart but at least he had his mind before this. This disease sucks. I wouldn't wish it on even Charles Manson.
05-21-10 Husband was brought back to nursing home again. I hope he doesn't get combative again as they will make him go get his meds straight again. He has an attitude at me. He is so thin and frail. He can barely walk.
porkhck, I am glad your husband is back to the nursing home. Mine is still in the behavior hospital. Not really doing very well....he is more combative than before he was placed there. He has had to have Geodon shots 3 times. My son & I went to see him last night, however, he had to be sedated before we arrived & slept the whole time. I HATE THIS DISEASE!
Kadee - I feel so badly for you. My husband was in for behavior twice and both times he came out worse than he went in. But like everything else about this dreadful thing is that there is no way to know if being in the hospital is the cause or if it would have happened anyway. He has become much calmer in the past few months in the nursing home and there is no way to know if being in the nursing home has helped or if it would have happened that way any way. So many questions, so few answers.