Hi. I'm new to this forum so please forgive me if I don't post correctly. I must say, however, that I am very grateful to have found this forum. It has helped me put some things into better perspective.
My MIL lives with my husband and I in an apartment that is attached to our home. She is 86 years old with pretty advanced ALZ. She can dress, bathe and feed herself (although we are starting to have to bring her down suppers or Ensures to make sure she eats something) but we take care of her medications, her bills, her finances - basically everything else. The hallucinations started this past summer and now she sometimes regresses to a younger self (the stress of writing her Christmas cards seems to have brought this on). She recently started searching for her parents, her in-laws (who passed away in the 1960's and 1970's), her late-husband and her late-sister (who both passed away 5 years ago). She often asks where all the people are that she was just talking with. We are still able to leave her alone during the day when we both have to go to work but leaving her at night is becoming more and more difficult and I don't know how much longer we will be able to leave her alone at night. It seems she gets scared and then angry once the sun goes down. We have not been able to leave her alone overnight for about a year now. Luckily, she still knows how to call us on our cellphone whenever she needs to know where we are (don't ask me how she can remember that but not what day of the week it is).
I have two questions. Hopefully it is okay if I post them both here?
First of all, since Christmas she has been asking us when we will be taking her back to her house. She sold her house in July 2006 and has been living with us ever since. She believes she is here just for a visit and that she has only been here for 1 - 3 weeks. My husband and I sit her down and try to explain to her that she now lives with us and that her house was sold. We show here the real estate papers with her signature on them and we show her her bank statements with our address on them. This just seems to confuse her and she seems so sad every time we go through this. My question is this. Should we just agree with her (basically lie) and just tell her that we will be taking her home this weekend? Her short term memory is gone so the chances of her remembering this are probably nil but what if by some miracle she does remember this and holds us to it? Then what? I tried doing this once and it calmed her down right away so would this be the correct way to go? Also, when she asks about her deceased husband and family, are we better to just say that they are out or do we continue to remind her that they have passed away? Sometimes she seems to be in the inbetween stage where she seems to understand the reality once we explain it to her, but not really. Then other times she gets so angry with us when we try to explain things to her.
My second question is when do you know that it is time to put them in a NH? I have read several posts where you all say that it is the right decision but how do you make that decision without the guilt? We went to a seminar this past spring and the speaker said that it had nothing to do with the health/wellbeing of the patient but everything to do with the caretaker's sanity. Basically, if you can't handle it anymore, you should place them. We are very worried that the move to a NH will send her downhill very quickly. When she moved here in 2006, we noticed a significant change in her behaviour due to the stress of the move. I should mention that she can be quite aggressive and very defiant - we rarely ever have a good day with her (we will be contacting her doctor to up her anti-psychotic medication). What if we place her and she dies in 6 months? How do you live with yourself if that happens? Both of her sister's died within 6 months of being placed in a NH and they both went out kicking and screaming (one of her sister's had to strapped to her bed). I should also mention that she has a fear of new places and people. If anyone new comes to talk to her, it stresses her out completely. This goes back to her childhood.
My husband is really trying to do right by her and he promised his father on his death bed that he would take care of his mother so we really don't know what to do.
Any suggestions or words of wisdom would be greatly appreciated because we truly are at our witts end here and no one we know can relate to our situation. Sorry for the long ramble...
Not a long ramble at all, you have some very real questions and concerns and uncertainty that everyone here has, or is facing. I don't have enough experience yet to be of much help, I pretty sure the advice you're going to get, but it will be clearer coming from the ones who are qualified to give it. Like they told me, take a deep breath and know you have come to the right place.
You will get far more informed help than I can give but please don't consider what you say as lying. You do whatever you have to do, and say, to keep your MIL on as even a keel as is possible. When my mum asked after dad I said that he was looking after us. We always wrote a Christmas card to her mum [my mum was 94!] and when she heard music I always heard it as well. I did and said whatever it took and never once considered that I was lying.
PB... it takes a lot of words to type out years of frustration The background information is necessary. First let me say welcome to our little corner. We all have been or are where you are. There are no write or wrong answers but there is lots of advice, experiences, kind shoulders and listening ears here from those that absolutely know what you are going through. So hang around
You can tell your MIL what she needs to hear for her well being. We can label it what we want to but I don't consider it lying. I consider it taking care of their emotional well being. I had much the same experience as you did with Christmas cards last year. It set Mom off on a long rant to go home. I put her off by telling her the holidays were coming and there was too much to do oand there was not a good day to go but finally I did take her just to see a few of her friends for lunch. Amazingly, she didn't even want to go to the house they called home. She was confused all day and ready to go back to her assisted living apartment and Dad. That was the last time I took her back to her home town. This year receiving cards from her friends set off the sam eking of frenzy. She had not mentioned home in a long time but I found her walking around with a stack of Christmas cards crying that she wanted to go home. I took them away, distracted her, and it was over until a well meaning substitute receptionist gave her another hand full of cards. Once again, as soon as I took them away, the angst has gone away. It was absolutely a memory trigger that was not a good thing. But back to your answer... Going through the papers concerning selling her home does no good because she doesn't remember it. It is new every time you show her and yes she is grieving the loss of her home as if she just found out for the first time. So it's not kind to keep doing the same thing over and over. You said yourself that putting her off seemed to work. Just tell her perhaps in the spring. Put it far enough out that she will not remember it at the time. As spring nears change it to summer
The seminar leader was absolutely right. It is not the loved one that determins when a NH is necessary. It is the caregiver. Some here were able to keep their loved ones at home the entire time. Some placed their loved ones early and some later. What you do need to know is that there is no guilt allowed. Your responsibility is to take good care of your MIL. That doesn't mean that you have to keep her in your house. It only means that you need to provide the best care for her possible. Sometimes the best care is a facility. In my case, both parents have dementia, there is no way we could keep them together and keep them at home. We moved them into Assisted living and then into a locked ALZ unit. Yes, there was deterioration of their condition with the moves but it was necessary for their safety and well being.
You eliminate the guilt by accepting that you are not super woman Soon your MIL will not be safe living by herself. She will need to be watched 24/7/365. The hallucinations have already started. Dad would get up in the night and go where ever his hallucinations lead him... even if that was out in the middle of a busy city highway at 6 am in 13 degree weather with no coat on. She is already displaying the paranoia and agitation that this disease brings. She will accuse you of all kinds of thing before that is over. She is going to wonder where those people are that she doesn't remember are dead. I wish I knew how many times I have told my Dad that his brother has already had breakfast and gone to work. Again, it is the kind answer since telling them that they are dead will be new and raw each time.
I knew it was time to move Mom and Dad when Mom ran off the caregiver that was staying with them by hitting her. She had just had an altercation with Dad that lead to physical blows. It was all precipitated by the fact that she had her driving privileges taken from her. Within 24 hours she was out of the house and within a week she was moved, with Dad, into AL. My only regret was that we didn't do it sooner and investigate the possibilities more thoroughly. We put ourselves into a situation where we were pushed and did the best we could. It was not a perfect fit but it solved the immediate problem!
A Nursing Home is not the only option. There is assisted living where they have a little more independence but there is somebody to take care of their meds, make sure they get to meals, and look in on them. There are locked ALZ unit. They have a "bedroom" in a small area and everybody in the unit enjoys the central commons areas. This gives them a little more freedom than the NH does. Most are designed specifically for ALZ patients as well. That has been the answer for Mom and Dad. They have free roam of their little area with no restrictions but can not leave their little area. It is big enough, with enough activity, and enough people to keep them stimulated but small enough to make them feel secure.
Now I am the one that is rambling I am sure others will chime in as well. keep asking questions and i hope to hear from you again soon
PB. I'll attempt to answer based on my limited experience.
With my wife, there was very little communication after she was diagnosed with Pick's Dementia. She was 51 at the time. So there were very few questions from her. But I think maybe in your case, she really doesn't comprehend a lot of the explainations and answers you are giving her. I would just use simple language, and tell her the things that will calm or pacify her.
As for when to go to NH? My 15-year old daughter was my wake up call. I finally realized one day that having her mom at home with dementia was not a healthy environment for her to grow up in. Yes, I waited far too long. But I thought I could handle it one more month, one more week, one more day.
Therapeutic lying is what it is called. We do it when we need to...and oh my we need to. We do what we have to do in order to keep their lives as calm as possible when dealing with this disease.
I am so sorry you need to be here because, believe me, I understand. We all understand.
My mom needs more care now too..she is in independent living with eyes watching out for her. Tomorrow we interview someone to be with her 3 mornings a week. She will hate it but we will do it and figure out which lie will work best to get her through it...and if it doesn't work then we will be forced to move her to Assisted Living.
None of this is easy. I am not the voice of cheery optimism tonight because I think today could be one of the worst days yet in dealing with it here for us.
But at the end of this day I am tired and we handled it the best we could with what came at us. We'll get up tomorrow and take it from there. It's all any of us can do, I suppose.
Thank you all so much for your support and "good sense". My MIL has already asked us several times this morning if she will be going home today. We have told her that we cannot take her today but that we will take her after New Years because we want her to stay and visit with us but unfortunately, she didn't like that answer. She wants us to call her a taxi so she can go home immediately. She is now slamming cupboard doors and yelling to herself in her apartment. What do we do??? The first time I told her this little "fib" last week it calmed her down but now it seems to be making her furious.
Another issue we have is what do you say when they believe that you did not spend Christmas with them or that you did not bring them to mass. The mass issue is a big problem here because she thinks that we didn't bring her when we brought her that very morning. I don't want to agree with her because then she will be even more angry that "we didn't bring her to mass", but she doesn't believe us when we tell her that she went that very morning and then gets angry as well. It seems no matter what we say or do she is constantly angry with us. My poor husband doesn't even get a good morning out of her anymore - she just starts in on him about going home or mass the second she sees him. Help!
she is in need of anti-psychotic drugs. Call her doctor and explain what is going on. See if you can get her to the doctors for an emergency appt or ask if you can give her a benadryl for the time being. Even 1/2 of one may be helpful in this dire time.
Ask the doctor before dispensing though. He may prescribe Ativan but
tell him you must calm her down.
She is already on Risperdal, but on the lowest dose. As soon as the holidays are over we will be contacting her doctor to see if he will up the dose. Because she has a heart condition and diabetese, we have to be careful of what we give her. She has an aggressive personality to start so I think maybe the ALZ is bringing it out even more??? We are taking it hour by hour.
After much investigation I have found out that Benedryl may have the opposite effect than what you want... and Ativan or Xanax also has an agitation side effect in the elderly. There are much better medications that can be used. Don't wait... call the doctor tomorrow and tell him what is going on and ask if there is additional medication that you can use to calm her down
Sometimes there is just no right answer. In those cases you muddle through the best you can. If there was a bulletin, program, or other paper that came from the mass you can leave it in her apartment where she will see it... or just hand it to her. Sometimes visual clues will trigger memories better than verbal. The other thing you can do is made statement about the mass rather than disputing what she says or agreeing with her. Betty sure did have a pretty dress on at Mass this morning... or didn't you think the music at mass today was pretty. The calmer you and hubby stay the better.
I do know what you are dealing with. My Mom was a very aggressive, determined and head strong individual all of her life. For the first 75 years of her life she used that determination wisely. It was after the onset of ALZ that she lost the ability to channel that determination in a constructive way. She is on several medications now to control her behavior... but I must say that she is happier than she has been in 5 years So Meds are a good thing and you should check out the possibilities sooner rather than later.
Bless you... It sounds like you have your hands full!
All of us posting here can tell you that when in Alzheimer or Dementia, most of us found our loved ones being what their true personality is all along.
If they were mild mannered, gentle, loving, caring -- then in that disease, they will continue being loving, gentle and mild mannered.
If they were bitter, agressive, feeling like the world was out to get them, then that would be their personality in this disease
Only we all found that their traits are magnified in this illness.
Good luck. And just because she's prescribed something doesn't mean it is the magic bullet. They may have to try several or variations of many before they get the 'cocktail' right and make her comfortable.
You start 'lying' when it becomes clear to you that the truth hurts them more than the lie.
Example : My Mom outlived her two brothers. During the last stage of her Dementia she used to ask where they were and why they didn't come to see her. Once I made the mistake of reminding her that both of them had passed away, she had been at the funerals, etc. She cried and mourned and was inconsolable.
A few days later she asked again, "how come R and A never come to see me? " She was in a NH by then. I told her both of them are far away but soon you will see them. They are waiting for you. You'll be going to where they are, very soon." This made Mom very happy! And it was in fact true in a way; she passed on about half a year later and according to my faith she is with her brothers now in a new life.
You move them to a NH when you cannot keep on taking care of them and keep your own sanity, or sooner. Each case is different but you KNOW when it is time.
We are really hoping that increasing the Risperdal (it's an anti-psychotic med) will help. When she first started taking it we saw a big difference in her personality for the better so hopefully a higher dose will do the same, at least for a little while. Last year we had her on the Exelon patch which the doctor said would be amazing - what a disaster that was. The screaming, tantrums, slamming doors, just pure anger day after day were horrible. We lasted several months (because they say it takes two months until you see a real difference) until we decided to take her off it for her sanity as well as ours. We are also seeing her general doctor in a few weeks because her blood sugar level is up again (she's diabetic) and they say that the blood sugar levels can really affect the brain. Unfortunately, around here, even the doctors don't really understand ALZ. Her general doctor thought that because she could put her shoes on properly that she was perfectly fine and it was her hearing that was the issue (my MIL is almost deaf). HUH? They have good intentions in theory, but in practice it does not work. We are consistently told to "deflect" when they bring something up (change the subject). I don't know about any of you, but it is impossible for us to "deflect" my MIL. Once she gets something on the brain, there is no getting it out of there. She focuses on one thing and will not let it go for days on end (of course she never remembers what we told her). I think the holidays were just too much for her even though they were very quiet (just the three of us). I think it triggered something in her mind. We took down her Christmas tree, decorations and cards a few days ago hoping that that would help, but to no avail.
For the mass issue, she does have the church bulletin and she stares at it for hours on end, but she can't make heads or tails of it because she has no idea what day we are. This is probably why she keeps thinking that we never took her to mass because she can't remember what day we are. For the longest time she thought it was Easter and then she thought it was her son's birthday. We've thought about taking the bulletin away from her but fear that she will go into a panic if she can't find it.
If only there was a manual available that would tell us the right thing to do... but having all of you is the next best thing. You are all truly wonderful for taking the time to help us out and to lend an ear and sometimes a shoulder. Bless you all.
PB I'm with them there is no one answer just finding the answer that is right for your family.. I have been taking care of my MIL for 7 years ( 4 years living here) she is in her final stages. Would I do it again knowing what I know? Honestly I don't know, but probably. Have I had to tell the little white lies to make her life happier, heck yea, and may have to again. The trick to that is only do it if it is for their happiness/well being. If saying "I'm so happy your here to visit" instead of " no mom you live with us" Makes her either cry or smile I vote for that sweet smile. It's not a mean lie just a loving one.
Keeping them at home is so much work and not for most. But either way there is no right or wrong answer. When they live with you, you'll loose a lot of sleep, no private time, can't leave when you want or if you even need to at times. Here is a good example, it's like having a 100lb new born baby to take care of and get ready when you do need to take them somewhere. But the rewards for having them here is just as sweet. I will have so many wonderful stories to fall back on when she is gone.
The one thing I will say is I don't regret the decision we made to take care of her and we have the rest of our lives to make up for the stuff we've missed over the last 7 years.
BP... sometimes there are no right answers and she is just going to be angry. You have to know that you are not going to be able to fix everything so she is happy. My mother was a very angry lady for a LONG time. Sometimes it was a matter of just making it a little better. Fixing it would have meant fixing her brain and that was just not possible. Mom also got fixated on something and would not let it go. You would think you had her diverted and next thing you knew she was right back on it. That "I need to go home" idea stuck for 2 years and is not totally gone yet. She got up from lunch today and announced that it was time to go home. But at least now she's easily diverted and it is not as persistent as it was.
The big difference with her was the medication. And we didn't go lightly into the medication. Mom spent 10 days in Senior Behavioral Med unit under the care of a geriatric psychiatrist. She is functional but heavily medicated... and has her smile back.
Today she was excited that I brought her a big mushy cheeseburger with chili and mustard. She wanted to know why I didn't bring two and I told her I did... Dad was eating the other one. She said "I need two!" Mom was in a good mood which put Dad in a good mood. So it was a great day... and both of them got their medication cocktail this morning So let's hope the resperdal works. That is what Dad is on