The original post was:
Caring for a spouse with dementia
My husband of 47 years has stroke related dementia . As the weeks go by he seems to be more and more angry that he is not in contol of his life. He has points in time that he is lucid and happy and he loves me and talks to me about how much he knows i have to do for him but he can turn on a dime and he calls me names breaks things and yells threats at me. I tell myself its not him but his dementia, however I cant seem to stop crying and feeling anger toward him. If anyone has advice to help me get through this p[lease share with me your thoughts . I know if I wait 2 to 3 hours he will forget all that he did but how do i forget and forgive ?
3 times is the charm he finally completed the MRI.. the doctor should read it tomorrow and we should know just what we have to do. I so hope the cancer is at the stage that they can freeze it and cure it as he said. I keep thinking what other challenge can life offer us. This is so hard .. I really need to get him home soon . Hospitals and dementia do not mesh. You would think these people would have some idea how to deal with this illness but they do not have a clue. I have to stay here 24/ 7 because you never know what they will do. I took 2 days for them to give him the right insulin dose and they still are not doing the early am fasting suger ... what the heck !! I do think that there needs to be more education in the nedical community to teach nurses how to do this . What a time this has been keep us in your prayers and I will keep you all in mine .
Hello everyone, thank you for all of your support this week. I don't know how some of you cope, especially working and relying on caregivers. Really sorry to hear of husbands in the hospital and diagnosis, I will pray for health, healing and sanity for all of you, my friends and spouses.
Yes, I too have had it with doctors,my husband told ours at least 3 times about his memory problems, ignored him, and now his memory is a lot worse. Had he listened over the past 2 years, it could have been preserved longer. It makes me angry too, he could still be driving by himself, instead of me having to do it all.
Got a break yesterday, my son drove me around in his car for errands. Today, he and I went to visit my other son (His brother), my husband stayed home and had a sleep.
I haven't looked into a caregiver yet, have been feeling really burnt out lately, and not sleeping well, we are to leave for Cancun for a week Nov. 26, it is a full 12 hour day of travel, only looking forward to the beach and warmer weather. I should be grateful, too tired, and scary. I can't let him out of site, really need a holiday myself alone. You are absolutely right NRM, it is like being on death row, a prisoner - he in his mind at times, us as their caregivers.
Mine is a worrier, and nags about what is going on with our sons which wears me down, I know he worries about how they will treat me if something happens to him, I just don't have time to dwell on it on a daily basis. His balance is bad, I fear he will fall on the stairs, and he is weak, also very stubborn. For the most part he takes his meds. I hate routine, so putting on his Exelon patch every night is a pain, even though it only takes a few minutes. I can't count on him to take his meds, though some days he actually remembers.
I will make the best of this trip and be grateful for it. We are about a 10 minute drive from the Hotel which had the explosion and killed 5 people, so that is also bothering me. One of the dead was married there, in his 40's, he went to get his wife a cup of coffee, they had just celebrated their baby girl's 1st birthday, and married a few days before. Family had gone home, they stayed on a 2nd week for their honeymoon.
Then the other young man who died today,from a fall in Mexico the week before, he slipped on something and hit his head on the concrete floor only 33. He had been there to attend a friend's wedding (my son is 36, the other one is 45), so this hits home.
I guess with the dementia, I am becoming more aware of mortality, and find it scary. Our relatives are so sick, and yet young people are dying daily.
Nothing seems normal anymore, I wish for health for all of us.
Good morning all. We had such a wonderful day yesterday, left for church at 10 and didnt get home till 7 last night. We had fellowship pot luck right after church and my husband had a great time talking with everyone, hugging all the little kids, and then we left there and went to my bosses house who had a 90th birthday party for his Mom. My husband remembered people, had a great time telling stories and chatting with old friends. About 6 I aksed him if he was ready to go and he said no, he was having too much fun. What a wonderful day! BUTTTTT, when we went to bed he got up every hour on the hour, even when I gave him extra melatonin, it didnt phase him. One time he thought the house was on fire, told me to get up that fires were burning all over the house, one time it was someone was breaking in, one time it was him saying the house was a mess and he had to pull up all the puppy paper in front of the commode...etc. so I have had no sleep. I think he just got over stimulated and couldnt calm down. Wow, how to make it through work today with no sleep! The caregiver should have an easy time of it today, he probably will sleep all day or will drive her crazy with talking all day, it always seems it is one or the other. Maybe he will sleep good tonight, I know I will. But, it was a great day and I appreciated it so much, really enjoyed being out with friends. I am going to look into the day care again for him, think he is bored at home without anyone to talk with. Sure hope you can get John home today jbdsta, I know what you mean, and I have been trying to think what we caregivers can do to make the public and the medical community more aware. If I come up with something, I will share it since we are all in the same boat. We need a Powerful advocate who can make people sit up and take notice. LIke the NFL or something... not thinking tooooo big! Have a great day everyone, blessings..
I think spouce can be best caregiver.Not even father or children or hired caregiver.
It is our feeling as to what is normal. In the world I think everything is normal.That is the only way we can rest.
Where is everyone? I dont know what is happening to this site, is anyone on? Jbdsta, how is John, are you all home now? I hope this gets fixed soon, I miss all of you. Good to hear from you jainmagra, yes, we are the best caregiver, the best medicine for their troubled soul. I agree. Blessings..
When I checkd this morning if there was any mail from any of you- nothing all day- Is everyone busy with prep. the Turkey?
What's going on with the site
hi guys we are still in the hospital...ugh....today an rn walked in announced she was the case manager and asked does he have a poblem giving himself lovanox shots.. i asked her are u asking if he can do it or remember to do it and she said why would he have a problem remembering to do it. OH MY GOODNESS... i asked her have you read his file and she said no... how the heck can you be the case manager and not know the case.... i went off like a rocket marched into the adminstators office and blew up... from that down to making a tech come in the rooma t 530 and do his blood pressure and empty the trqash at the same time. I didnt hold anything back !!! I want out of this place NOW... his INR is too low so until its at 2.5 he has to stay here... I still have no info on the results of the mri but a person called from another doctors office wanting to make an appointment to set up and outpaitent surgery to freeze off the cancer from his kidneys..........I KNOW NOTHING......... i need info for goodness sake. I am losing it my friends for sure ....
Hang in there. I know you are stressed but it is not a perfect world and neither are we. Most hospitals have a chapel or chaplain. When my husband was in the hospital in May, I would go to the chapel and pray and it helped me so much. I am considering an anti depressant or an anti anxiety drug just to avoid a stroke myself. Or at least another small one, I'Ve already had two. One of the things they warned us about in class is caregivers burnout and that we can become sick ourselves from being overly stressed all the time. Make time for you. If you get sick then you won't be able to help him. You are going through a lot right now and although the system is not perfect it's still one of the best in the world. My thoughts and prayers are with you and your family. May God bless and comfort you now and give you the help you need.
I am confused. My mom's inr changes everytime she has to get a shot for the pain in her back. They take her off it for 8-10 days and she might take about 3 weeks to get back to normal but she is let out and a nurse comes in 3 times a week to keep track of it. If they are going to operate on him would they need to take him off of whatever is controling his inr so that he can be operated on? I never understand why they do things from the hospital. Like they wouldnt do a malmagram for my mom it had to be done out patient and your husband has to have the cancer frozen off as an outpatient and I bet anything that they will keep him in over night because he is high risk. Sheesh everything is confusing. I have noticed that the site takes awhile to send out the emails now adays. it used to be done kind of instantly and now they wait and send a couple at the same time. Maybe something has changed. The case worker that we had with my mom and dad did not know anything either. Why do that bother to take a history if they are not going to read it. I know that they are busy but you are right jbdsta isnt that their job? Especially since there are usually general notes and everyday notes and everything as far as I know is on computer in my hospital. It used to be that you would go into the er and they would take a history, then you were admitted and they would take another history and then you would go to the rehab and they would take another history. Not only that but your account number would change in each of those steps because your account was closed in the er and then closed in the regular hospital and then closed in the rehab. At least now they kind of pass the information around to the different departments. I know that I am not calming you down Jbdsta and I really should be but I get upset when they do that too. Maybe it is about time that they get things right. With my mom and dad they do that too. They keep them in taking test after test after test and then they decide one day to just let them out. Hopefully they have found what they need to determine what is going on and then you can go home and do what you have to do. It sounds like they are getting very close to discharging him which is good. The care manager usually does not come in until the end when they are trying to set up his home environment. That is a good sign Jbdsta so celebrate it, ask alot of questions, and get the heck out of there.
Thanks guys..... tonight was crazy... he was screaming yelling throwing things and I couldnt get it thru their heads that thay can not ask him to take his sleep meds they have to give it to him as night meds......... someone needs to train this folks on how to tend to people with dementia. I can not understand this mess. I get that call from a doctor to set up the procedure but then NO ONE has talk to me !!!! Why in the world does this place not give info at all. I am so mad i am chewing nails. I talk to the advocate and she talked to the charge nurse that i never can find and she appeared in my room in defensive posture.. You are right Punker I need to calm down but I cant right now.. I am just toooooo mad. There was one nurse that could do this and she was really good but when she is gone that are out of options to help him. I will get better I am sure when I get him out of that place.. and you can bet I will look at a different hospital... they are BAD and its a shame.. thanks for hearing me rant my friends
My heart goes out to you jbdsta, start breathing, and your being there at the hospital may get them to pay attention, as they should, but don't. You are right to stand up for justice, and your husband is lucky to have you there. These people just don't get it most of the time. Our doctor didn't listen when my husband told him at least 3 times over 2 years that his memory wasn't right. When it finally got worse, he is now on Exelon, and it is a pain having to put this silly patch on every night, he is also on Warfarin and several other medications. I never wanted to be a nurse, and I get overwhelmed as he is very irritable, and keeps me awake in the early hours when he wanders around the house for an hour or more. When he gets depressed he goes to bed during the day, then wakes in the early am, I have to be here most of the time and am in burnout. Also when he stays in bed too long and is not active it throws his INR off, his blood thickens. He also skips meals when he does that which affects the INR. As he no longer drives, he does not go out alone, and has no friends to spell me off. He also has Scleroderma, has had for 20 years, so he has not worked for 20 years (age 70 now), also drank heavy for many years. All of this has affected his memory. Scleroderma is similar to Lupus, is in the arthritis family, means hard skin, affects the internal organs and skin, creates stiffness, affects muscles(they deterioate),causes more depression. Having a loved one in the hospital is very draining, the environment is not nice, with all the noise and goings on. My spouse was in hospital for 8 days in Sept. 2008 when he had his blood clot, we were 3000 miles from home and our holiday was interrupted. Lucky we knew 1 family there and they were so helpful, I had a place to stay, and chose to stay at a Motel the last 2 nights near the hospital. I had a rental car. Insurance helped out, and the staff and doctor there were excellent, as well as the food. It was in Newfoundland, the eastern coast, we live in the west. I hope you have someone who is there for you. For me it is my Mom's calls occasionally which help me through. I no longer have time to visit friends which was very helpful, maybe next year. I am searching for a home to buy, we sold ours in June, and need something on one level now. I feel very unsettled, and am constantly interrupted when I try to organize my space. Sometimes I just give up for the time being. I keep up the finances, cleaning and most of the meals on top of dispensing the meds, vitamins and answering his questions, plus our 36 year old son is quite needy (due to mental health and addiction, which is improving). I have never given up, though I am slowing down on energy, and feel out of shape that way (not overweight, just overwrought), not enough me time. He is watching some TV while I am typing this, does not watch a lot, no hobbies.
Good morning my friends. I am up way too early, but the dog wanted out and I was afraid to ignore her--didn't want a mess, if you know what I mean. To jbdsta, I am feeling your pain. Just where is this hospital? I want to stay clear of it. Will you get home today? Do you have any Thanksgiving plans? I know you are probably thinking Thanksgiving????? I am in a pensive mood. I have no brothers or sisters and all of my aunts and uncles and parents are gone, but have a few cousins that I don't see very often so holidays make me sad. We had Thanksgiving dinner at my uncle's country lodge for 50 years and this is the second year to not have it and I miss those times of family and security. Sorry to be so pitiful today. B is doing OK. Going for a neuropsycholical test on Monday. Any one done that one yet? Not sure what to expect. Just hope he will be cooperative--just never know what will set him off. Will check in later. peace
Hi Peggy1, I thought you had son and baby coming from Ky, did that fall through? Where in Ky? That is my home and I know what you mean, we have been alone for years in Fl while the rest of the family is in Ky & Ohio so the holidays are never what they used to be now that my husband has dementia. He used to shop for months, always got me exquistite gifts and cards but now, that is gone. You know what I have found though, when I let people know that we are alone, we get wonderful invitations to their homes and the holidays are not like they used to be, sometimes they are better. I used to be so proud, would not let people see that I am needy, but now, I say " what the heck, I am needy and others get a blessing by sharing with me, so I will let them!" I used to be the one giving, so I need to let them give to me for a change and quit being so proud. We are going to friends house for Thanksgiving and anothers house for Christmas. Then my daughter and our 2 grandkids are coming on New Years Day and we are both so happy and expectant. So, the holidays will be okay but not the same. It is our expectations that crush us, we have to be willing to let them go. JBDSTA, I wish I had an answer for you about that hospital, I think I would ask if he could go home for Thanksgiving and just not take him back. Has the doctor been in, is he someone you could talk with in a non confrontational way? You are right, we just need to keep educating people, try to be patient, but I know that is easier said than done, he is your loved one and you hate to see them mistreated. And it is dangerous. And we have to deal with the consequences of our loved ones melt downs. Maybe it would help to keep a journal of what is happening, sometimes that helps to cool things down emotionally, try to focus on the things you can change and give the rest to the LORD. I dont know where you are spiritually but even if you have no faith, fake it, HELP is a great prayer. I will be praying for you. And Butterfly, remember what you know and rely on your Higher Power, He hasnt left you just because you took your eye off Him, HE knows just where you are. Sometimes we just have to be quiet and listen. Your situation makes me grateful, you are dealing with so much. You are in my prayers. Sounds like you could really use some fresh eyes on your situation with your son and your husband. Is there someone (besides us) who could come to assess what you are up against? I know, we are mostly alone to fend for ourselves but maybe your GP could come up with an advocate for you. Blessings one and all..
A lot of my stress when my husband was in the hospital came from lack of sleep. I stayed with him for a week and there was no full nights rest. He almost died when the nurse hooked up a new iv with a new antibiotic and then left his room. If I had not been there and ran in the hall yelling he needs help he would have died. They even called the chaplain on their own, then I was afraid to leave him too but I was so tired when they moved him to rehab that I had to go home. It was exactly what I needed to keep me well. Just sleeping in my own bed was like a mini vacation although I slept with the lighs on I needed the sleep that badly. Sometimes we feel locked into the same doctors but I wouldn't hesitate to change if I thought it would help. They are human and some are dealing with what we are dealing with at home and God bless them for trying but mistakes are made and with an aging population I cannot imagine how the system will work. Maybe we are their trial run.
I really do not know why they tell dementia patients what the pill are and why they dont just give it to them. That is what I do at home. Sometimes she asks what they are but usually she takes them and everything is fine. They dont discuss things with you either.
Son and family are on the road from KY to Birmingham. He has the son that was born on 10-11-10. Can't wait to get my hands on him! We moved here two years ago from Ashland, KY to help our daughter with her baby daughter, who is now three years old. Did go to the gym today and then finished at Winn Dixie.Lots of cooking to do in the next twenty-four hours so may not check in again until Friday. Hope everyone gets to eat a good meal and make new memories. Happy Thanksgiving.
Boy when I read all your heartaches it makes me sad. At home it's not much better, right now my husband is in a no eating phase, everything tastes bad anything with any kind of sauce is disgusting, I was at my wits end as to what to do, four days hardly any food. So today I started to give him finger food -cut up the food in bite sizes, lo and behold it worked, he still complains the food is disgusting but just the same he ultimately eats something, it seems like everyday a new adventure I mentioned to my husband that I will not work on Thurs. since it's a Holiday- Thanksgiving, sad to say he didn't understand -Holiday or Thanksgiving. He comprehension at times is like a 3 year old
When I think ahead as to where this Disease will take us- it sure gives me a good scare. SO I am glad we can share/vent our daily experience/ideas.
Wishing you all a Happy Thanksgiving
That is how my mom eats very small pieces and not much at that. My dad had very very bad teeth but hated things ground up which he considered dog food. I ended up giving him corn beef hash, speghetti o's those real small raviolas and things like that. He ate that ok. I know that those are all highly processed food but I was not going to give him pasta that looked like cream of wheat or roast beef that looked like dog food which is what they do in the nursing home alot when they have trouble swallowing. Those strange single serving speghetti products were suprisingly neutricious. You might try those and since he was 86 his doctor said it was too late to get him to eat correctly anyway.
Dollbutton, welcome, I dont think I remember one of your posts before unless it was before I started posting with this group. I could relate to what you were saying about thier loss of control and I understand because I am a control freak and dont like it when I cant be in control. What I did with my husband early on, I would ask him, let him tell me, and even if it was bizarre, I would say, " Yes, I agree" and then go ahead a do what I knew was right, because he had already forgotten what he said, and then I would say, you know, that was such a good decision you made, thank you so much for helping me, and he would be so pleased and nothing was wrong either way. Try it, I hope it works for you. The key is to not get all hung up on who is right,who is wrong,who is in charge,because ultimately it is neither of you, God is in control and He doesnt make mistakes. Sure will give both of you peace, he wont be melting down and you wont be having to deal with the consequences of his being upset. I am must just so thankful to have learned that method of giving him a little control and joy, our life has been so much better. I too cut up his food for him, he eats everything with a fork even stuff you would normally pick up. I found some ceramic deep dish pie pans that I put all of his food on,no extra dishes, and he can scoop it against the sides without spilling it all over the place and cut everything up real small but still attractive and he eats like a horse now. You might try that Ernaburger and see if that works. I love this site and give thanks for each of you each day. I truly dont know what I would do if I didnt have you. Happy Thanksgiving one and all, we have much to be thankful for since our spouses are still with us and we have moments of joy with them! I hope we hear from jbdsta about her husband and that he is out of the hospital. Blessings to you all,
Hope this morning finds everyone rested from a good night's sleep. My son and his family got caught in traffic on I-65 so they stopped in Nashville for the night. Will get here this morning and they should be well rested. He had a big meltdown yesterday doing the vacuuming. I just never know what will set him off. I do that trick--tell him OK then do what is right (in my opinion). He is very confused with the idea of Thanksgiving and asks over and over who, where, when, and why. Lord, give me strength to get through this day. Maybe I will hide away in a bedroom with my six week old grandson..that should bring me lots of smiles. God bless us all. Catch you later.
Why has this got to be so hard for us. My husband is in the hospital behavior unit for thanksgiving. I went six months with no sleep and I have to work. In the last two an a half months it became every night.It got so that I couldn't even go to the grocery store anymore or cut the lawn. The constant screaming where are you went right up my spine...He is totally dependent he can't walk by himself he has no motor skills any more....Any way they are trying to adjust his medicines...and I thought some physical therapy would help so I put him in a nursing home where they had the best therapy in town well they threw him out....he wouldn't let anyone sleep he yelled and screamed all night....Welcome to my life I said....So he was sent back to the hospital...Anyway happy thanksgiving to all.Maybe this time they will get his meds right before I kill the cat... yea before he went to the hospital the first time I was so stressed out I almost killed the cat I had forgotten to give her water for many days she kept throwing up and peeing all over the place and I couldn't figure out why.
It is not a perfect world, nor is it a fair one. for years I could go on three or four hours of sleep but no more. My age I guess. After a couple of nights I am no longer my self. I can only imagine your level of stress. We are all on the same journey, we just hit the rough patches in the road at different times. My husband's blood pressure is going way too high in the late afternoon and now I have to schedule him yet another appointment. It is a challenge to keep it all together. I find myself doing strange things too and forgetting a lot because of the stress. My brain is just not able to remember like it used to. It frequently let's me down and downright lies to me. Lol. I remember things just sometimes not fast enough. Drives me nuts so I can imagine how they must feel. I'm reading The Thirty-six Hour Day. It really helps to learn how they are thinking and what is happening in their brains. Happy Thanksgiving all.
Hi Nrm I began adding everything to my calendar in outlook because I always am on the computer first thing. It reminds me about appointments and when to order medicine so I always check them that day and what day mom goes to day care and when to feed and water the bird etc. For things that I have to prepare her for the reminder starts days ahead of time. It is a pretty good system for me. Happy Thanksgiving. I am listening to the parade through the baby monitor so I guess I have to check on her.
Good idea Punkersad. I use my Ipad a lot and my Iphone for appointments. That way I have it with me at the doctors office. I have a calendar on the refrigerator door as a second reminder. That seems to work best for me. I don't turn my computer on much anymore with the Ipad. I can lay in bed and check my messages. It was expensive but worth it for me. Have a greaT day.
Sounds good. I used to get my computer checked by my work and they always laughed at me because I had appointments for everything. I just find it better to right things down.
wishing you all a good day, without any major hurdles (just for one day) Due to the holiday I am not working today, so my husband is all anxious because the routine is disrupted, why am I home & not going to work I will get fired etc... this has been going on since 8am,also how come there is no mail today, what is a holiday? and so on... if the stores would be open I would leave and tell him I'm going to work, this will make it for a long day, maybe I'll go to the movies to escape the repetition & obsession. I don't mind doing for him, his personal care etc.. but the obsessive/anxious behavior is truly a test of patience on my part, sometimes i feel like a bottle champagne ready to pop. I have to count to ten till the rage passes, sometimes I scare myself at the anger, and afterward I always feel guilty My kids are going to their in-laws, grandkids can play with their cousins. So we are left to fend for ourself, to top it off today is my big 68, time is surely flying, even when you are not having fun ( all the time) I think I am feeling a little sad today, It could have so great I feel like this Az is sucking the life out of me (today anyway) I am also watching the Ny Thanksgiving parade - good distraction, if ony he would watch it too
HI there, mine has been sleeping through the parade with me but has enjoyed it when he wakes for a few minutes. This has been one of those blessed days where he is content, has not asked tons of questions ever since we updated the day and date on the white board and I wrote Happy Thanksgiving on it he has been happy. FOR NOW! I know what you mean about the tons of questions and the dissappointment of birthdays alone with no one to make a fuss like he used to but I am working on changing my expectations, looking for the good in every day and creating moments of joy for both of us. We are invited to freinds house for Thanksgiving feast so hopefully all this sleep he is getting will pay off in good energy for that. I pray for all of you that even though this holiday and the one to come will not be what it used to be, that you will be blessed with acceptance of what is.
Hi everyone... I got him out thank the lord.... I called in his cardo nurse who is a force trust me.. she told them let him go she will get the inr up and they did ! Its hard but better in the house ! Nasty behavior coming from him for sure ...why is it when I read all your posts i can so relate !!! your life is my life .... now we have this possible cancer in his kidneys..what else can happen. My spouse was a heavy drinker as well so he is reaping what he did to his life but why does it have to take mine as well !! I too can not remember things and i am not sharp like i was... yep i am losing it and im mad as hell about that but my stress level is crazy. I cant do anything but take care of his needs, cry and get angry..that is no way to live but it is now my lot in life ! I too have a son that is needy xdrug abuser and can hurt more then help. But when he does help me he is good at it. We spent Thanksgiving at my daughters house he had several tee tee accidents and when the sun went down he lost reality again. He threw a whole diet coke in my sons face when we got home... then was sorry ..... what a mess that was. Has anyone contemplated what we will do when they are gone ! My doctor told me that I must do that but I have a hard time thinking about that, I know I must get ready but I just cant..with all the hard times and the seconds in every day I wish I had relief from this I still cant imagine my life in anymore then day to day. I cry too much and think about our life before this happened to him or I should say to us. I try to think about myself in ways other then being so tired and stressed. I try to do things just for me but I find that impossible. I am thankful for all of you and thankful for being able to share with all of you. Outside my computer I have no one that understands this life.. you all are my lifeline. Much love
It is practically for everybody--Outside their computer nobody understands their life,even their near and dear ones too.Change the attitude to face the harsh reality.
Have you considered an anti depressant? I am going to ask for one. It is just too sad to watch them die by degrees. I have tried to think about what I will do and I can not get past today either. I know when the time comes God will lead the way. My sister is in a similar situation and she is in her mid seventies. I worry about her a lot. Her husband is having a scan next week. He hasn't been diagnosed yet but they started him on meds already. Saw a good program about unnecessary life prolonging steps that just stretched out their misery. Sometimes it is so hard to let them go but when their quality of life is so compromised it is cruel to put them through so much. Maybe his cancer will be a blessing in disguise? I think my husband's brain anurysm might be for his sake but I will leave that up to God. My prayers are with you.
It is a new day and we will meet it head-on, I am sure. He had one little melt down yesterday at our daughter's, where we all gathered for dinner. In fact, he had a good day for the most part. That is what I don't understand--how he can flip out for no apparent reason and then five minutes later be OK. This is a cruel disease for sure. It is raining and so that means no outside walk--maybe later. Our nine year old granddaughter stayed with us last night and she and I are up by 5:30. She is playing with the dogs. Later this morning we will put up the tree and decorate the mantle and then get the other two grandchildren here to take pictures to make a Christmas card--not sure how that will turn out. I will let you know! Another Andy Andrews thought for the day--Today I will choose to be happy. I am the possesor of a grateful spirit.---later
Good morning. Jdbsta, so glad you are home. The one thing I have found out is that routine is everything, a strict routine with no wavering. I have read a lot and know now from experience. It is like, if you were on a pond of ice and didnt know if it was thick enough to hold you, you would only be comfortable in the one spot you knew was thick enough and your stress level would go down. These guys dont know what is safe, they have no reality to hold onto so when we establish a routine it is a safe place, they have been there before and they are less stressed. It may become boring for us who crave some diversion but they need security. The part of their brain that tells them they can handle things is gone, we are their lifeline. The ones of you who have others in the home that are stress makers as well, I just dont know how you handle it. I think even if it was my son, I would ask them to leave so you could get your husband comfortable and in a calm place. Mine did well yesterday watching the parade and dog show, my luxury, I have never gotten to watch both of them all the way through, and when he was awake, he enjoyed it too. But, when he woke and I fed him a sandwich, and we were both still in our pjs, had not had our shower or dressed, he was so confused, had a meltdown, and i had to give him extra anti anxiety med to get him into the shower and dressed to go to our freinds house for Thanksgiving. He finally calmed down but I realized that I cant do that anymore, we have to stay with the routine, no matter what I want to watch on tv or how lazy I want to be. He didnt get his walk or lift weights or anything that normally happens in the morning, and ultimately, I paid the price. Their calm care is for us, they are not like they use to be and will not defer to what we want, they cant and we cant expect the same behavior of them, they are incapable. Again, it is all about expectations and what we could have had, should have had, would have had. Our ranting against this disease and our cursing it just wont change anything except to make us sick too and then we are no good to them or ourselves. I tell you guys, I am smarter and love myself too much to let this thing make me a victim, I am going to find a better way to live each day as it comes, it is not going to steal my life too. I really hope you see the wisdom of what I have to say and make life easier on yourself. I have grown to love and rely on you all, you are my daily buds and I want the best for you. Peggy1, I plan to get the Andy Andrews books, they had none in our duddy library, very little on Alz either or very few Christian books. I dont know who selects the books, obviously someone that does not have the same needs or taste that I have! Thanks for the little jewels, they are sayings to hang your dreams on, Blessings all...
The best thing is I got to spend a little time with our daughter yesterday she cooked dinner for the first time in a couple of years.The worst part is what they said to me at the hospital.The nurse said that some of this behavior he was doing on purpose that he knows what he is doing...He is trying to control the situation and make people do what he wants now....That so hard to hear I was almost stroked out myself from the constent need this need that from him...Has anyone else experienced this behavior???He can't walk he only has one arm that works it must be horrible for him but he was killing me by not letting me sleep at night. I still work
Gmf My dad was up all night too and finally I had to retire at 56. I couldnt handle both of them and work. Lonely wife you are right about the routine being essential. If you take apart 1 day like Thanksgiving and figure out all of the new (to them )stimulations and changes it is really astronomical what they are faced with. They are like babies who not only have to go through a new experience. They have to do it usually without naps or comfort items and they are expected to act like adults. Wow it is amazing that they are not commotose with fear. Sheesh the world is a really scary place for people who dont have memory. My mom is going to day care today just because it is part of her routine. I dont have to go to exercise so there is really no reason why she cannot be home but I dont want her to get out of the routine.
I just read the article about living to be 100. I dont know about you but as a caregiver to a 81 and 86 year old alzheimer sufferers who will probably have the disease I dont think I want or can afford to live to be 100.
By golly I agree with all of you, "lonelywife" you are right on target keep the routine, and do for yourself, live in today, I must say as tough as some days are, by loging on and reading your thoughts on a daily basis, it improves my outlook immensely - mostly because you all understand, the family/people around me cannot grasp the severity of this disease, for it's more the daily emotional issues, doing the physical work would be a breeze. On a final note, it's very cold here, I am not going shopping -Amen
Just discovered this discussion board - it's wonderful! God bless you all for your postings! and for your insight, compassion, kindness and faith in a loving God!
My 85-year-old husband is at some midlevel stage of Alzheimer's or vascular dementia - actually has been diagnosed with both. His short-term memory is terrible and he's pretty vague about his family, even his own children (they live far away, and we Skyped with his son and daughter and grandson last night - he was strangely unimpressed).
The worst part isn't his forgetfulness or even his hoarding (our apartment, including the kitchen!!, is heaped with pictures; he's an artist). It's his chronic anger and sadness. Thankfully he's not physically violent, but every day, many times a day, he talks about how much he hates where we live, hates his life, can't go anywhere (he's not allowed to drive anymore and has difficulty walking), hates all doctors, art dealers, people in general.
I have all the legal stuff in order and I'm in a support group, which is great. Also I'm seeing a counselor paid for by my employer - I REALLY recommend that. I've always been skeptical of counselors, but she has been a life-saver.
I am 59 years old and work 32 hours a week (although I've been taking family and medical leave time intermittently). If I were to stop working and do freelance it would be financially difficult but the worst part would be being home with him all day. Now I just come home for lunch every day or occasionally ask a friend to have lunch with him.
I have him on the wait list for a really nice memory-unit assisted living place but have turned down a couple of opportunities - I'm thinking I might do it next time. Of course, now that I'm writing this he's resting in bed and is uncharacteristically content. The Diana Krall CD playing now might be partly responsible, so soothing and sexy.
My inner conflict about putting him in the assisted living place is this - am I doing it just for my own convenience, because I'm bored with him and because I'm so restricted in what I can do (he fears and resents any outside activities - church choir, friendships)? Would it be an improvement for him? He's pretty lonesome and isolated now. Would he enjoy socializing with other demented people and the nurses and aides and social workers? Or would be be an impossible, angry grump? Would he miss me and the cat horribly - or not?
Welcome, sounds like you will add a lot to our group, we always need new insights. Your dilemma is one we all face and frankly, I am not sure of the answer except I think I need my husband here, I am not ready for the aloneness and the end of our marriage as I feel that is what it would be. I dont know if that is best for him except he is more content with me and has come a long way with the help of good supplements and the addition of antianxiety drugs. The key is the geriatric nuerologist whose specialty is dementia. All other doctors think they know but dont.Our life has been so much better since finding her, also adding B12, B vitamin complex, folic acid and melatonin at night. The antianxiety drugs took a little tweaking but we are in a nice lull right now. I am glad you mentioned counceling, I could still use that but have found it is difficult since my husband can not be left by himself even for a minute so it is either me here or the 40 hour week caregiver and when she is here, I am at work. May try to get someone from church to come be with him while I get counceling. GMF, I am upset for you about the nurse who said that he is using his behavior to control you... who the hell is she anyway, a dementia expert, has she walked in your shoes or lived in the hell of his mind?? Damn, everyone is an expert, I would not listen to her and I would treat him with the love and respect that he deserves. You said yourself, he is in bad shape, cant walk and has only one arm... how would you feel if you were him? He cannot live in your world, tiptoe softly into his and love on him, he has enough on him without someone saying something stupid like that! Try the supplements that are working on my husband, you may be surprised at the results. Blessings all of you...
Twenty five years is a huge age difference. I think at some point assisted living will be the right thing to do for both of you. I had difficulty leaving my husband for a common ground meeting for a couple of hours but when I looked in on him he was smiling and laughing. He had a good time. It's like when a child first goes to kindergarten they scream and yell then when you go to pick them up they want to stay there and play. They will need more and more care as this disease progresses and eventually it will be too difficult for us to handle by ourselves. I am debating now on whether we should move into an apartment or a seniors retirement community that offers assisted living when and as you need it. We have a two story and I am afraid he will fall. It is overwhelming to think of moving on top of everything else but I am afraid not to think about it too. He is having great difficulty walking and sitting and standing up. I NEED WISDOM AND FORESIGHT FOR TWO.
They all say, in all the books I've read, that you should plan for the placing them in a nursing home or assisted living, know what and where, be on the list for the one you feel is best, and that when the time comes, you will know that it is the best thing to do. I am just not there, and confess that I have not looked. My plan right now is to keep him home until the end, he has had it now since 2001 so he is in the mid to severe range but still continent and can walk, feed himself, dress himself with a little direction, just is delusionary, cant dial a phone, does not know the day, date, year, or who I am at times, certainly cannot drive or be alone because he does not know where he is or where to go. So right now, with help of a professional caregiver through an agency, I can handle it. I just take it one day at a time, try to be gentle with him and myself and forgive both of us when we dont get it right everytime. The one thing we do know about dementia, there are no norms, everyone is different and that is what makes it so hard to make those hard decisions, there is no precedent or hard and fast rules for it. I pray at lot, seek you alls councel, and dont listen to those who are not walking in our shoes, that includes the medical profession, most of them anyway. Blessings all..
Dear GMF, I agree with lonely wife that the nurse is almost certainly in error. People love to talk about someone as "controlling," but my counselor, on my first visit with her, when I told her about my husband's anger and irrational behavior, said, "I don't think it's about control at all, but about FEAR. He knows on some level that he's falling apart and he's really, really afraid."
Dear NRM, the assisted living sounds like a great idea. I know what you mean about moving, it's horrible, but people will help. Our church was unbelievable - they moved about a hundred framed paintings and prints for us, it was astounding. Moving is one thing people seem to like to help with, thank God! (It's less scary than dealing one-on-one with a nutty person.) Also, at the assisted living place I think you'll be among people who will understand what you're going through and could be very helpful to you.
Dear lonely wife, my husband's mental situation is almost exactly like your husband's, except I can leave him alone for a few hours at a time. If I were sure he'd be happier in the assisted living place, I'd be inclined to place him there and see if he got to like it. It's not a prison, you can always take him back. I took him there a few months ago when a bed came open, and very gently we broached the subject, and he basically said, No way. Yet lately he's been saying that he has to "go away," and "will you come to visit me?" The assisted living people tell me that just about everybody perks up when they get used to the place, and that usually happens very quickly.
I have read the last 18 pages of posting and I guess I feel lucky now as things are going well with my husband. I take one day at a time and know one day I probably will have a different attitude. He was recently diagnosed with vascular alzheimers. We just completed a 7 weeks early stage alz class which helped me a great deal. I am not sure how much my husband of 46 years got out of it. He now is agreeable to anything I want to do. there are no anger issues at this stage. His memory comes and goes. He is very routined. He knows what is happening with him and accepts it. All legal and medical issues were taken care of a few months ago. Both of our daughters were involved in making the decisions (input). My husband currently is on 10mg of Aricept, two 70mg of fish oil Omega 3, Vitamin B-12, Zocor for his cholesterol, at night he takes a 325 mg aspirin and a supplement called "Protect" he takes one in morning and one at night. Our daughter researched this "Protect" by a Dr. Shultze and swears it will help on memory. I am willing to try anything and the neurologist okayed it for him. I am planning on going to more support groups as I find it helps. the support group we attended (the 7 week course)the people in the group decided to keep in touch with one another. What a blessing they were for me. Even though each case is different, I know one daywe will be at the same crossroad of nursing home, etc. I have read each posting and truly appreciate your input. Judypa
Welcome, Judypa! It's quite possible your husband will never have anger issues, which would be great. Sounds like you've been very loving and prudent and that your daughters are on the same page with you.
I hope no one thinks I'm pushing the assisted-living thing (although it never hurts to get on a waiting list). By the way, this particular facility is designed just for people with Alzheimer's (and similar dementias) who are not in the totally helpless state; it's not a nursing home. And, once you spend down, Medicaid will pay for it.
On a day like today, when my husband is feeling quite content, it seems as if we'll never need to do it. And, if I did get him into assisted living and he needed me to be with him a lot anyway, it could actually be worse than having him at home.
My counselor said, "There are two conditions that should prompt you to decide in favor of assisted living for him. One, if he's unsafe at home. Two, if you can't take it anymore! If either of these conditions exists, then it's probably time."
Lots of postings to read, some of it was very informative. Always enjoy my morning coffee and read your input Virginia in Maine - sounds like our husbands are at same Az stage I go back and forth with placing him in a home, so for the time being I have decided that as long as I can manage the situation I will keep him home. If it gets harder I will try home help first. I checked nursing homes in ou area, min. cost is 9000.00 per month, and for any Illinois state assistance- I can keep my home & 10,000.00- in other words go broke. I therefore feel I can get good home care for less then 9000.00 per month. I suppose we all need to figure what works best for us
I am lucky that he is very docile, and obliging, I understand that can change anytime, so for now it's still managable.
Dear Ernaburger, The news is much better than that!
You can keep your home plus $109,560 plus maybe some income. This is from the Illinois Department on Aging website, http://www.state.il.us/aging/1athome/ccp_spousal-impov.htm:
Federal law protects spouses of nursing home residents from losing all of their income and assets to pay for nursing home care for their spouse. When one member of a couple enters a nursing home and applies for Medicaid, his or her eligibility is determined under what are called the "spousal impoverishment" rules. "Spousal impoverishment" helps make sure that the spouse still living at home will have the money needed to pay for living expenses by protecting a certain amount of the couple’s resources, as well as at least a portion of the nursing home resident’s income, for the use of the spouse who is still at home.
Effective January 1, 2010, the Prevention of Spousal Impoverishment Standards are:
The Community Spouse Asset Allowance Standard: $109,560 The Community Spouse Maintenance Needs Allowance Standard: $2,739 *Amounts will increase each year.
Wow thank you - you made my day. In 2006 when we went to a lawyer to put our papers in order, the Atty. adivesed us to put everything in trust and that the state only would check our financial records for the past 2 years (which now is 5 yrs. So last year the Az was progressing quite a bit, I contacted my Atty. in turn he turned over to their elderly spec. & she advised that putting things in trust did nothing in getting state funds but to disolve all our assets (split it up between my kids- I have good kids but I am not quite ready to do this) I will check out your rec. web site So much for Paid Atty advise.
I am most grateful for your informative reply
I dont know if I would trust your elder attorney either Ernaburger. I live in Illinois too and my mom got the house and the 109560 too. My dad could go on medicaid right away. Some sources on the web said that you could set up an irriversable (?) trust but caring.com says something about medicaid has to be named on the trust so I dont know. It might depend on the state.
