We visited my husband's neuro today and he sounded doubtful that I would be able to keep my husband at home for the rest of his life. He explained that the severity of the cognitive decline combined with the great physical condition he is in would present extreme difficulty in maintaining safety and in taking care of him in general. He said that it's actually easier if the patient is debilitated. I am NOT dealing with anger or aggression issues, and I was surprised by what he said. Anyone out there who has done this successfully?
marilyninMD, My daughter and I managed to keep Sharon home with us until she passed. I have to say that everything the doctor said is true except that it can all turn on a dime. If you had asked me two months ago how long I would be caring for my wife in her condition I would have said years. In fact all of her doctors said the same thing. There are so many things that can trigger a change and there isn't a doctor on earth who can predict with any accuracy how long any given AD patient will live. One month after Sharon actually kicked her PCP into a wall she passed quietly away in bed in my house. My advice would be, prepare for the long haul... but don't be surprised if it turns out to be not so long.
WE had our mom home until the end. However we had in home help from an health agency..round the clock and it was $$$$! Later we had private hires for my dad.
I am anticipating that it will only be doable IF I hire at-home help.
What Mark/Thunder said is interesting to think about--sometimes I look at Jeff's condition, and relative "health," and presume that I WILL be living this precise life for years--possibly decades--to come. At the same time I am aware that this is statistically improbable. He's had symptoms since '03...that's almost 8 years. I wonder if things will turn on a dime, as Mark says, but I don't expect it. I think we will stay exactly like this, in this strange placid limbo, for the next 15 years.
Three years into this and I think I will see it thru, but it does seem to move very slowly, yet I look back at picture and see drastic change in that time in her looks. I am 8 yrs younger than DW and in good shape to handle the physical aspect of her care. Of course my health could change on a dime too and all bets are off. I do have a home health aid that comes in 5 days a week for 4 hours each day at this point and I see that increasing as she progresses to decline.
Marilyn, I did both...put my husband in a secure AD facility in the mid stages when he was uncooperative and aggressive. Then when he became bedridden and unable to communicate I brought him back home and kept him here until he died. The last years of his life were the easiest....he couldn't hurt himself or anyone else and he was safe in bed. It isn't easy, but I was more comfortable with him at home and I could hire help to vacation, go out for longer periods of time and to bathe him twice a week. I was paying $7000/month for his facility so I figured I could buy a lot of inhome care for a lot less than that.
Of course, I was in good health, had a healthy attitude and lots of activities, family and friends to keep me on an even keel.
Marilyn, a lot too depends on your physical condition. Are you the size and condition that if it becomes necessary to lift and move him you can? If not, can you afford to pay someone to come in home? I watched my older sister luge her husband around - he was 6'4" tall and stiff as a board. When he would fall on the floor it took 3 of us to get him up. She had a system down to get him out of bed, into a chair, to the bathroom, etc.. I could never do it. In my younger years I was much stronger because I grew up competing with boys. But, after my husband's affair I decided I didnt' need to be strong like a guy and now I am not. I have tried picking my husband up now when goofing around and I can't when he is playing dead weight.
Sandi--I thought about you when I posted this thread. What you did makes a lot of sense; but speaking for myself, if I had to make the emotional commitment to place my husband (unless things would be totally unacceptable in the facility and there weren't others that were better) I doubt that I'd bring him home. I bet that's why few people follow the course you chose. Have you ever known anyone else who did?
Charlotte--No, there is no way I could handle my husband physically--I would definitely hire a lot of help (as Sandi says, you can buy a lot of care at home for what facilities charge). That is what appeals to me about home care--the family can hand-pick the help and oversee care. My mentor at the Alz Assn is a nurse who has worked in dementia facilities for years--she says that lots of state regulations are ignored and that care at home is definitely better. However, I realize that in many cases, moving the patient out of the home is the only practical option.
Marilyn, my bringing him home was predicated a lot on the fact that the "powers that be" aka The Department of Aging, was determined that in his condition he should be moved from his AD specific facility into a nursing home setting. I didn't want him moved...he was in a residence with only nine residents and it was a beautiful home with no resemblance to an institution and was someplace I could spend time and felt at home. I was prepared to fight the system and even had a lawyer lined up and was going to "crusade" for the masses.....LOL! One day I woke up, realized that the staff was doing nothing for my husband that I could not do at home and I could hire help for the rest and I made the decision.
I know many people thought I was nuts...that is nothing new, but when someone gets in my way or tells me that I can't do something...well, that is like waving a red cape in front of the bull. It wouldn't work for everyone.....I had emotionally disengaged from my husband and I was able to handle it pretty clinically. It felt right to my family...we had him at home....the grandsons played in his room...they saw me feed and change him....I think they learned compassion and will probably remember that their grandpa was still a person....not just someone lying in a bed in a cold sterile environment.
Things have changed a bit in the state of Missouri and there is a more "reasonable" set of rules for aging in place so I am hopeful that no other family has to make the decisions that I did. But, I don't regret one minute of it and would do it again in a heartbeat.
Charlotte, if my husband was mobile I could not have brought him home. By the time he was living here again he was totally bedridden and I didn't get him out of bed...that was left to the paid caregivers.
To answer your question.....I haven't hear of anyone else bringing someone home...but I can't believe I am alone......
Sandi--your second paragraph really hit home with me. I was speaking with a doctor recently, and he mentioned how important it is for children to learn about and see illness of relatives. It is a part of life, and I agree that it will help instill compassion. It saddens me that sometimes parents feel that illness is too "scary" for kids to see.
Like yours my husband also has EOAD, and I intend to keep him home as long as possible. He is still is the early stages able to do house and yard work, I can still leave him at home while I work. He no longer drives but can walk to get his hair cut, shop etc...He is happy and has no behavioral problems.
We have a large home and I hope I will be able to hire a live-in caregiver when the time comes. Since I'm in my early fifties I intend to continue working as this may give me respite later when he progresses to the last stages.
I have mentioned my friend Karen whose husband was diagnosed at 36, nine years ago. I believe her husband Mike has been bed bound for about 4-6 years. Here is her blog: http://www.henleysheroes.blogspot.com
marilyninMD, My wife, Sharon, did fall in our house and spent two days in the hospital about a month before she passed and that could have had an affect on the course of the disease. Yet, it seemed to me that her down turn was almost a choice. I know that is hard to understand but I know my wife. She was as determined as any person I ever met and she always feared those last days. I know if she had a choice she would have chosen to die.
Trish, Sharon went from driving a car and doing the shopping to dead in just over four years.
Thunder--if the duration of Sharon's illness was only four years, it sounds like she may have had the true "Early Onset" genetic makeup. My husband's neuro thinks that although he was dx at 60, he has the later-onset variant because it is progressing slowly. So like Emily, I expect many more years of caregiving in the future (unless something totally unexpected happens).
I was so sorry to hear the loss of your wife Sharon. You're right to point out how quickly this disease can take our loved ones. For now I'm living one day at a time with my husband.
I wish you all strength and hope. My wife did in fact have a genetic mutation that actually "caused" the disease. We had a genetic screen done not so much for her because she was already sick but to provide a more complete medical history for my daughter. Sadly, the positive result for Sharon's genetic screen now means that there is a 50/50 chance that she passed the mutation on to our daughter. Kathleen has not decided when she wants to have the screen done on herself. My nightmare isn't over yet.
Thunder--I don't know how old your daughter is, but if she wants to have children, there is a way she can ensure she doesn't pass on the gene (if she herself carries it). This was explained to me by a doctor who heard me speak at a conference: your daughter would need to have genetic testing done, if she does have the gene, then when she wants to become pregnant, it could go something like this: She would have, for example, 8 eggs extracted and fertilized in a lab: statistically, 4 of those would have the EOAD gene mutation and 4 would not. The doctor would then implant the "good" eggs back into her body and the baby would be born without the EOAD gene mutation.
P. S. If she plans to have the screening done, I would recommend that she sign up for long-term care insurance BEFORE she does it. She can always cancel the insurance if she gets a good test result....but if not, I doubt she could be approved for the policy.
I am lucky enough to have long term health care insurance should I need to place my wife in Assisted Living or in a Nursing Home. I'd prefer she remain at home with me as long as I felt I could provide the necessary care, albeit with some additional help. However, I don't know if I personally could feel comfortable with 24 hour help in my home, and I do know that certain aspects of AD would get to me after a period of time ... incontinence, raging, wandering, etc. But I suppose until one actually has to face the question, one doesn't really know how one would respond. The scariest thing about AD for me is the 'not knowing' when that freight train is gonna crash. Diagnosed 18 months ago at the age of 63, but clearly displaying symptoms when she was 60, I no longer have any expectations. Each time my wife 'falls off a cliff' with a severe worsening of present symptoms or with new symptoms, I expect things to progress very rapidly. Then she'll reach a plateau for a few months and I wonder if she'll be one of those who goes 15 years. No one can know. It's the not knowing that puts me on edge more than anything else, I think.
OH My acvann....you sound just like me...it is the unknown that is driving me crazy. My dh is 63 also and had dx at 59. He has copd and a heart condtion too.
acvann--similar to your situation, my husband has the insurance too. However, I'm trying to evaluate whether home care is a better alternative. I agree on the 24 hour help thing--I don't think I'd like it either. But in reality, if the patient sleeps all night, what would be the point? I bet that in facilities there is a skeleton crew working at night and that not much caregiving goes on during those hours anyway.
With regard to declines...It seems to me my dh's decline was very gradual for the first 3 years, however this past year he has had what I would call two advance declines...one in May and now another starting the first of Nov. In fact I had to take him to the neuro yesterday and the doctor put him on seroquel becase he was so depressed and paranoid. These two declines seem more severe then the declines for three previous years put together....does this mean he will be declining faster?? I don't know.
I had questioned my husband's doctor about what seemed like an increased speed of decline when my husband reached the middle stage. He responded that it wasn't that the rate of progression was increasing; it was because my husband could no longer compensate for the losses as well.
That is very interesting. It seems to me that it could also be that these newer declines are of a more severe nature and do affect me more. My dh could fake a lot of the earlier declines but this past year declines cannot be covered up...also I can see the difference in the look of his eyes especially when I try to talk to him or explain something. I see he really is not understanding what I am saying. He really looks frightened sometimes too.
When my husband reached the final stages his eyes had a dead look. Every once in a while he would look directly at me and tears would roll down his face. I don't think I will ever get over that terrible heartbreak. Ever.
JudithKB, it is interesting that when reading your post I also see that look in my dh's eyes. It makes me sad because it makes me more aware of the loss of the man I love. Bluedaze* I can also relate to what you said. That has happened to my dh also. I wish he was not able to understand when a new development comes that he can't do something. He gets such a sad, sad look on his face. I know he wish it were different even tho he can't verbalize like he once did. We play the guessing game, me guessing what he is trying to say. But at times like these, where he recognizes the limitations he has, no words are needed, you can see it all in the eyes, and yes that look will probably be with us forever... I pray for a Blessed New Year for all of us, caregivers and survivers alike, that this new year brings acceptance and understanding to us all.
Marilyn, dh was dx'd in 2008 at 58 (signs at least 2 years before dx) and is now 60. He declined quickly the first 5 months after dx but has plateaued over the last year. I plan on keeping him home until the end if at all possible. Because of his aggressive behavior, the drs. at the hospital would only allow him to be home if we had an aide 24 hours a day, so we have a live-in aide. You're right - dh sleeps well each night (about 10 hours) and it seems like a waste of money to have an aide 24 hours, but there have been times when dh got up unexpectedly and wanted to leave. I'm glad we had someone here because I am not physically able to chase after him nor could I pick him up if he fell.
He has LTC ins and they pay for 1/2 of the cost of the home health aide (they would pay the full amount of an ALF), so we have to pay the balance which is very expensive. Also, you pay the same for an aide after 9 hours with the agencies here. The hourly rate is $20-22/hr and the 24 hour aide is $195-220/day, so it is more cost effective to have the live-in. And yes, it takes a long time to adjust to having a stranger live in your home. We are 2 years into this and we have FINALLY adjusted. Given the different options, I am glad DH is home with me even if it means giving up some pprivacy.
LFL--So are you saying that your 24-hour aide comes from an agency and you pay between $195-220/day? Just wanted to make sure I understand correctly. I didn't realize that agencies, in effect, reduce the rate after 9 hours.
LFL, My DH was DX in 2008 at 59 and now he is 61.(Signs were at least 2 years before) I am playing the guessing game with him and has noticed that he is have a more difficult time finding the right words. I want to continue to work since I am 59. I am thinking that I will have someone come in and help me but when do you decide to have someone in? He does has moments of not remembering where something might be located. (Yesterday it was his towel) He did look a little funny running around naked and no idea where to locate his towel. I asked him what would he do if I wasn't here. He said he would rest and watch a little TV until his moment was over. I have been off for 11 days and can tell that his words and his memory is shorter. I call him and remember him to eat his lunch and he calls me if he needs to. He is not wandering yet and has lifesaver monitor bracklet on. We also have adult daycare close to our home. My problem is when to get someone in to help him? i hope I am not going away from the discussion about trying to keep them home. I know I want to do keep him at home with addiitional help or day care until I can no longer do so. Happy New Year to all!
My wife is is obviously no longer able to do what she used to do love doing. For example, she can no longer read books for her monthly book club because she can't remember what she's read anymore and has little concentration. Crossword puzzles have become too hard for her, etc. Also obvious, as this was one of the first AD warning signs to me, is that she no longer has any interest in activities she once enjoyed doing ... doing jigsaw puzzles, playing piano or guitar, making picture albums from our trips, etc. I'm sure most if not all of us could say similar things about our spouses. But about 6 months ago, she was introduced to an online came called Super Text Twister ... basically it's unscrambling no more than 7 letters to find all the possible words you can make using only those letters. Well, an hour ago, my wife was playing this game and called out to me, "Ya know, I really must have gone downhill a lot recently because I can no longer find a lot of the words." So, yes, JudithB ... some declines get too hard to cover up and these, along with those increasing blank stares, are VERY hard to deal with. My wife's last 2 declines were also quite severe ... fortunately not with any new symptoms, but severe declines in 4 areas that were already problems. Her short term memory is now completely shot, her agnosia and aphasia have significantly worsened, and her ability to process even simple one-step directions is going fast. But, like you, I haven't the foggiest idea of what this all means and no doctors, I am sure, can not tell us either. Does this mean that our spouses are going to slide even faster ... and further ... in a short period of time? Or not? Like Emily, I wish I knew. But no one knows. No one knows.
beachgirl--What stage of the disease do you think he is in? In my opinion, if you work full time, that is a lot of time to leave him alone. Aside from the safety issue (which is a biggie), I would be concerned about him being lonely/afraid/bored. If you can afford it, daycare can be a great solution. It would provide socialization for him, a safe environment, and is probably more cost-effective than using in home help (unless you can find someone who will work cheap). My husband attended for over 4 years and although it wasn't perfect, overall, it was a good solution.
I think he is at the beginning of stage 5 or ending stage 4. He has no problems dressing himself and can take care of his basic needs. We have a lot of neighbors around me that keep a watchful eye on him and have my number to call me. He does not want to go to Adult Day Care. I do get off work at 3:00 but have to go in at 7:30. The day care starts at 7:30 so I also need to find a way to get him there. He usually watches TV especially golf channel when I am gone. If he declines more, i have no choice but to get help for him.
Marilyn, yes I am saying that the hourly rate is between $20-$22/hour but when you arrange to have a 24/7 aide the daily rate becomes $195-$220. At least here in NJ. You should call the agency and find out what their policy is. I believe the home health care agencies know what the LTC ins companies will pay and adjust their rates accordingly. I had an aide one day for 10 hours and the charge was $220.00. It would have been the same if I had him for 24 hours. The home healthcare agencies are trying to be competitive with the ALF daily rates.
beachgirl, I originally hired the 24/7 aide because I was going back to work (alot of travel) and because the drs. would not allow him to live at home w/o a 24/7 aide. He was in early stage five. We have no suitable daycare near us for him (geared towards elderly - 75+ and mostly women, not dementia specific) so that wasn't an option for us. Until he got lost for 14 hours and 400+ miles in the car he stayed home while I traveled took care of 2 big dogs and was seemingly able to feed himself, care for the house, do laundry, etc. The real wake-up call was when he went out to buy ice cream at the local grocery store we've been shopping at for 25 years, couldn't find his way home and 14 hours and 400 miles later I got the call from the state police to pick him up 2 hours away. Before that incident I would have told you that he was perfectly capable of taking care of himself, keeping the house and taking care of the dogs while I traveled for work. They are masters at disguising the true extent of their illness. BTW, he still dresses himself, shaves, showers,feeds himself, can assist with meal preparations, etc. with no help. Just because they appear functional, they are not. I learned it the hard way.
My dh has was diagnosed at age 58 (but showed signs of a problem at least a yr before). He is now 67. He cannot do anything on his own and has almost forgotten how to stand/sit. I can get him bathed now (by the bed or in the wheelchair) and dressed. It is like working a full day to get him clean, shaved, clean teeth, lotioned and dressed. The lift chair is ok but he does not always know how to get out of the wheelchair to get into the lift chair. They are truly a dead weight! and sometimes I think his legs are in concrete. I know they fear falling and think they are closer to objects than they are so that creates a problem for those of us helping. We don't have long term care as it was expensive and most people said not to get it. I plan on keeping DH at home. It is familiar to him. Dr.s don't know enough to give us a lot of support or help. Ours said get help or put him in a convalescent home. Most of the help is more like a baby sitter type - no lifting or giving meds. They will sit, feed, bathe, do light housework. I don't need someone for 4 hrs a day. It is a big decision for all of us and each person is so very different even at the same stages. I think when the doctor suggested it would be better when your spouse was bedridden was because you can get more help (palative and hospice care). He should have explained it better. Thank goodness for this website and all of the good hearted spouses who contribute. I pray for you all and hope you have a better 2011.
Thanks, LFL and brindle! I sure do wish they would find a cure for this horrible disease! It is NOt fair that we have to indure this illness with our love ones and have no idea where it will lead us? I am feeling a little sorry for myself since I will be returning to work on Monday. it has been nice being off from work the last 10 days and spending time with him. Who know when he may forget me? I am in his short term memory since we have known each other for almost ten years. I think that is what frightens me the most! (that he will not remember me) When I went to visit the adult day care, there is mostly older adults there too and I feel he will be happy there. I want to start off with in home care first. I didn't realize that in stage 5 he could still take care of himself. I am going to make a Dr.'s appointment and talk to him about what he thinks I should do with DH. His Dr.is his Internist. I suggested that he may need to see a neurologist but he said that he would be able to manage his care. I am thinking of requesting one for him. He was in a clinical trial and was being assessed all the time and I felt confident that he was in good hands.
Beachgirl, most of our loved ones can (or will) forget our names, but I KNOW for a fact that my husband always knew I was the person who loved him and took care of him. When the doctor's would ask if he knew who that lady (me) was, he'd sometime just smile...and lean his head over on his shoulder and looked at me with such a sweet look...and then shake his head no. But the look said it all. He knew I was someone special.. and I was that special someone who loved him the most. Not knowing my name wasn't all that important to me. There were times (albeit few) when he thought my name was "XXXX" - his first wife. A few times, he thought I was his mother. It didn't matter. I knew he loved ME...regardless of the name he called me.
We were married later in life..and had only been married for 20 years when he died. Nancy B*
I was reviewing the Fisher Alz stages and if I read it right it seemed to say that the first signs of advancing from stage 5 to stage 6 was forgetting how to dress properly and needed assistance with putting on clothes. If any of you that have spouses in stage six was this the first sign you saw in stage six???
Not here/./ I noticed difficulty working a microwave, a phone, tv, dvd, and almost anything else. There was a bit of difficulty dressing, but I noticed deficiencies in all the other areas first. It has now progressed to the point that she absolutely cannot put on her clothes properly, and cannot work any appliance, control, microwave, tv, dvd player, and now has difficulty turning on a light switch. My wife always dressed very fashionably, and now she seems to wear the same clothes over and over. I bought 3 sets of these, and I alternate them in the wash...she never knows the difference, but at least they are clean..She mostly wears some nice cozy comfortable pajamas made of some soft velour material, and I have 4 sets of those (same color etc...). She also wears socks, but they are made of bamboo fiber (supposedly softer), and they are very hard to find....luckily before Christmas, I found some and bought a dozen pairs....My dryer seems to require one sock a week in order to keep working... We are just crossing the line into stage 7, but there is no real apparent difference. She is a bit incontinent, but it is not a physical problem...It stems from having to do so many steps before toileting....and usually she forgets a very important one, and incontinence occurs...
According to the Fisher stages, my wife would be stage 5. But much like Phranque, she started having severe problems with the microwave, phone, computer (and I'm talking just email), etc. ... you name the appliance ... quite some time ago ... but has had no problems with dressing yet. She does now wear the same outfits over and over, but other than that clothing is not a problem. As I learned from a wise person at the 1st meeting of my weekly support group, "If you know one person with Alzheimer's, then you know one person with Alzheimer's." So, with all due respect to the Fisher stages, I don't know any 2 people with AD who have experienced symptoms along the same linear continuum.
I thought that was a strange thing for Fisher site to express. My dh taught computers and he cannot do his e-mail and can play a couple of games that I have put in favorites. He can do tv, but doesn't understand most of what he is watching. He cannot do dvds at all. Sometimes he cannot tell which way to turn the facuet in bathroom to get hot water.
He is still pretty good with clothes. He can't do the phone or make coffee. If I don't make lunch he doesn't eat. He is half and half with the micro. He can put something into it...but then what???
Judith, I had to watch carefully that my dh did not put metal in the microwave or paper plate in the toaster oven. Good idea to unplug the toaster or toaster oven when you are not using it. Later, he won't be able to use it at all...