Throws my food in garbage; leaves freezer open and ruins all food; etc. Are there books I can buy or instructions on how to be more understanding when these things occur? Thanks for any info to help.
While this is frustrating, exhausting for you imagine how it is for her. To look at an object and either not know what it is or to realize that you have forgotten how to use something that you know you have used most of your life. You can try to prevent some of the things from happening. Give her a task that she can do while you make dinner, or heat up a dinner. Put a lock on the freezer and refrigerator so that she can not open it. If she asks just say "it's stuck I will fix it later". Get a little refrigerator for her for snacks is she wants to snack during the day. (If she doesn't now that may come) A few hints for you. 1. Do not yell. It will frighten her, make her nervous and she does not know why you are yelling. 2. Do not argue. You will NEVER win an argument with a person that has any form of dementia. 3. If you have friends or family that ask if they can do anything to help say YES. Ask if someone can pick up a gallon of milk and bring it by. If there is someone that your wife likes and trusts ask if they can stop by and visit with her while you run to the store to get a few things or get a haircut, or visit the dentist and so on. 4. Decide now at what point will you have to consider placing her in Memory Care. For me it was Safety. As long as my Husband was safe while I cared for him at home, as long as I was safe while I cared for him at home that is where he would stay. (and with the help of Hospice and the VA I was able to keep him home, that and the fact that he was very compliant and never violent) 5. Find a good support group. 6. If there is Adult Day Care in your area get her going there for as long as she is able. And the 36 Hour Day is a good book.
As far as the decisions you will have to make...There are no "right or wrong" ones. It is a decision you make at the time with the best interests of your wife and you in mind. As long as you can put your head on your pillow at night and you can tell yourself that you did the best you could that day there is nothing you should regret and you can sleep well knowing that you did the best that you could.
Wonderful response! I agree with everything you mentioned here:)
I loved the book, The 36-Hour Day by Nancy L. Mace & Peter V. Rabins It explains things so well. It definitely helped me to understand what brain disease is, the different types and how to put myself in that perspective as well.
Your wife is not doing anything on purpose, her judgement, reasoning, and cognition is slowly deteriorating. She can perceive emotions...highly, so try not to show anger/frustration it will just make things worse for the both of you. You will need to learn that white lies are harmless and to let the little things and sometimes big things go too...I know I did, very quickly. I have locks on my cleaning supplies cabinet, medicine cabinet, refrigerator, and childproof knobs on my stove, now that I think about it I should also cover electrical outlets! I bought my mom activity toys to keep her busy, she needs to do something ALL day, TV is not cutting it. There are activity items for Alzheimer/Dementia but they are also expensive, I bought things that are also good for a toddler they worked for me and my mom is happy...colorful stickers on construction paper, Lincoln Logs, matching games with colors, shapes, letters, crayons and coloring books. I went from being a single working gal to having an 83 yr old daughter, it’s a life changing event for both!
This will be your ultimate challenge in your life, you do it all out of LOVE...whether you do it yourself until you can or you give that challenge to someone else or someplace else that has a team you are comfortable with. I’m 45 yrs old and resigned from my job last year to do this 24/7, I’m constantly researching and reading on this terrible disease. It will be hard without a doubt but there are joyful & pleasant times with your loved one too. So gentle hugs, caressing on her hand, a light back rub goes a long way.
Good luck, and I hope you make the decision that’s best for you.
We are now 11years into my husbands ALZ diagnosis. I remember how annoying it was the first couple of years when he would forget things or I would need to repeat things over and over. When he stopped the van on a very busy Blvd in Jacksonville, FL to tell me he didn’t know where we were going I had to become the full time driver. About four years into the disease he became bladder incontinent; it was then that I realized forgetting things and repeating myself was not all that much to handle. With each passing year things just got worse, and I never thought I could change that many adult diapers. A couple years back Bill would take everything out of the freezer and just leave it out. I tried putting signs on and in the freezer, but it didn’t help. I then just put the “good stuff” in the back freezer (it’s in the laundry room) and kept the door locked so he couldn’t get to it. He will be 91 in a few weeks, and we are almost 11years into ALZ. I can honestly say that until you can look back it’s almost impossible to know that this stage (whatever stage that might be) isn’t that bad. I do get frustrated and even snap at him at times. I can snap at him and make him angry for just a moment, and in the next second he will ask “what are we doing today?” With no memory of being angry. His behaviors cannot be corrected. I have decided that if getting upset helps me get through the moment then it’s absolutely okay. Most of the time I acknowledge (to myself) that getting upset is just going to drag out the episode; although occasionally I acknowledge that it okay to be upset, angry, and even disgusted because being a caregiver can sometimes be ugly. While your wife’s illness will not get better, I assure you your understanding will. See if there is a support group in your area, it’s nice to hear others express things you may be experiencing and feeling guilty about. Realizing you are not alone and having a place to vent is very beneficial.
Sending you a hug as I sit here catching myself after some ugly moments. Mom has neglected hygiene but would at least go to hair appts and the nail person next to hair guy files her nails which she neglects due to the dementia. Dad is 102, active and deaf so communication is a challenge. However he had a note with her hair appts and he forgot. It was quiet and I thought they had left while I was otherwise occupied...but no...so at 12:47 I informed him and there the Queen sits, with a shirt and pants on under her blue furry robe and totally unwilling and uncooperative as far as going. So we wind up paying for the lost time of the hairdresser who cannot squeeze her in the rest of the day. I think they got out in time to get the nails filed. There was name calling earlier and I know she meant every word. Decades held back. ANd I also know she'll forget in the next moment. I stopped worrying long ago, and am often grateful my father cannot hear what I am saying:-)
Google Teepa Snow and watch her videos on youtube. You need to understand what is happening to her. She has no control over what she does. Her brain is failing. I know it is frustrating to you because you probably feel like so much is intentional on her part, but it isn't. She would probably be horrified to know she is doing what she is doing, if she was in her right mind. Teepa Snow's videos helped me understand what was happening to my mother when dementia first hit out of no where. You also need to understand this isn't going to get any better or easier. If you are already frustrated now, and I've been there so I understand, you probably need to go ahead and research Assisted Living facilities to place her in. Look for one that will let you transition to Medicaid if you run out of money. While you are doing that, you should also consult with an elder care attorney who can help guide you along the way and protect assets for your care later, while still providing for your wife during this time.
If the food is getting ruined from the freezer being left open, it has to be for very long periods of time. Is your wife being left alone? If so, you need to rethink the entire situation including how "early" her stage of Alzheimer's truly is. Go to Alzheimers.org and read all about the disease, the stages, and get helpful tips on what to do and not do. Teepa Snow videos are excellent, as was stated, and a recommendation from me as well.
You need to start thinking about the dangers that are present in your home right now, and how your wife may get into trouble. For example, mixing ammonia and bleach together to clean and asphyxiating herself. Or trying to cook and leaving a pot on the stove. Or wandering off in the middle of the night. There are a ton of possibilities for what could happen to her if she's not closely watched 24/7 which is impossible for you to do, realistically. If she's not yet at the stage where she's exhibiting dangerous behaviors, it may not be far off.
You may want to look into Memory Care Assisted Living homes for your wife. I work in one and can tell you that I see lots of husband's and wives who have placed their spouse when they became too much to handle at home. Some come to visit twice a day and have a much better relationship now that they've relinquished their caregiver role.
Think about it as you read all about Alzheimer's and what to expect moving forward. Teepa Snow is on YouTube and particularly good at explaining the difficulties and frustrations associated with this dreadful disease. Knowledge is power.
To be fair, the freezer door can be left cracked open and you don't really notice it or perhaps is not in the main kitchen area. I've discovered my freezer door cracked open when someone 'stuffed' things inside and it didn't seal properly. So it may not have been because she was left alone.
There is NO way for someone to be understanding of someone who has Alzheimers - it is impossible because of their minds and physical behaviors. Unless YOU want to go totally insane or explode and murder someone, you MUST face the fact that they are mentally gone and nothing will ever go right. There is only one thing you can do. You MUST PUT THEM INTO A FACILITY WHERE THEY WILL BE SAFE AND CARED FOR BY TRAINED PEOPLE. No one should be expected to be able to handle them or care for them without disasters constantlty. Sad but true. Or aren't YOU worth it?
I disagree. While I may not be one of them, some people do have the ability and compassion and dedication to care for someone. There are good days or calm days with these people, and the answer is not to just put them somewhere. Respite and other in-home help is often available and certainly for some finances come into play and other issues.
My husband was diagnosed almost three years ago. I noticed differences, a few years earlier, but it didn't click, until on Mother's Day one year, he gave me a card and a mug that said Happy Grandmother's Day. At first I was so hurt, but then realized, it wasn't him, but that he was changing mentally. I love him, for taking care of me all those years, that it was time for me to really take the reigns, and become the provider, comforter, caretaker, so he would feel save and secure. The book, " Caretakers Handbook", and Alzheimer's Association, are great places to start. Also, Teepa Snow, a phycologist, has you tube videos available online. I know there are times that I still get angry and what my husband says or does, (I have to bite my tongue,) but I have to let it role off me, because he is not the person I married anymore. I still love him and I will do whatever I have to, in the years to come, to make sure he is always save and I am there for him. Patience is something we have to have, when we take on this responsibility. Suggestion: be more observant, with whatever she is doing. Make sure to keep an eye on her. Example: I husband, took a scissors, from his night stand and proceed to injure himself. So, I took away all scissors. He had a cigarette lighter collection and a knife collection. I also took these away for safety reasons. He no longer drives, another precaution. He is stubborn and bi-polar, argues and disagrees with everything I ask or say, so expect your wife will act according to how she is. We all are going through the same things here. Be patient, kind and love her, that's all you can do.
I have the same thing with "disagrees with everything I say" and makes stuff up.... it's very challenging and socially isolating. Guess that's ok for now as we're all in social isolation w/ Covid19
Patience, letting go of who she was before. It’s like raising a toddler, unfortunately one that doesn’t really learn anything new. My mom who is in mid stage frustrates the hell outta me. Positive behaviors are disappearing while new negative ones crop up daily. Weird stuff that do not make sense, they lose their common sense. We have to let go of expectations and just take one day at a time. Just as we treat and respect a child, you just love them and keep them safe. Take care of yourself, let go of what was “your normal” and remember you are NOT alone. What you’re doing, caring for her is not easy! You are her hero, her friend and her touchstone to who she was...her memories. I’m sending you a big fat “I understand” hug!
Acceptance is the first step that your wife is in the early stage of Alzheimer's.
To learn how to deal with your wife's behavior from this disease (which she can not help) I suggest watching youtube Teepa Snow video's. I found them very instructional on how to deal with my elderly Mom.
I was going to recommend Teepa Snow's videos and books. Also, try meditation - try to interrupt your automatic responses with a one (or more) deep breathes, acknowledging you feel xxx (angry, frustration, going batty), and train yourself to shift to another 'inner place' . . . the shifting or ability to shift is key. Just being willing will help you shift. I would also recommend getting a caregiver in, even an hour or two a day if you can. Give yourself a break. And, for critical behavior such as leaving the stove burners on or overflowing the bathtub, you may need more care-givers and/or consider if other steps are in order. Talk to a social worker if you can; the Alz Association (and Teepa Snow) personnel are very compassionate and understanding. Call them. You might benefit from a support group. Thanks for writing here. It not only helps and provides you support, it helps all of us deal with this. And, as I often or not often enough say to myself "But for the Grace of God Go I" (It is the only religious phrase I know).
This is very difficult to deal with. At the early stages of AD, you think they could do better, but most of the time they can’t, as they find it harder and harder to hold things in memory. If you can hold that reality in your mind, you will do better. She is not trying to make you angry. Set things up so she and you can be more successful with these changes in her behavior. Make sure that you get time away from your situation to take of yourself. If you don’t take of yourself, you will both crash and burn. I took care of my husband with AD for 10 years and it is more difficult than most people realize.
You can try to prevent some of the things from happening.
Give her a task that she can do while you make dinner, or heat up a dinner.
Put a lock on the freezer and refrigerator so that she can not open it. If she asks just say "it's stuck I will fix it later". Get a little refrigerator for her for snacks is she wants to snack during the day. (If she doesn't now that may come)
A few hints for you.
1. Do not yell. It will frighten her, make her nervous and she does not know why you are yelling.
2. Do not argue. You will NEVER win an argument with a person that has any form of dementia.
3. If you have friends or family that ask if they can do anything to help say YES. Ask if someone can pick up a gallon of milk and bring it by. If there is someone that your wife likes and trusts ask if they can stop by and visit with her while you run to the store to get a few things or get a haircut, or visit the dentist and so on.
4. Decide now at what point will you have to consider placing her in Memory Care. For me it was Safety. As long as my Husband was safe while I cared for him at home, as long as I was safe while I cared for him at home that is where he would stay. (and with the help of Hospice and the VA I was able to keep him home, that and the fact that he was very compliant and never violent)
5. Find a good support group.
6. If there is Adult Day Care in your area get her going there for as long as she is able.
And the 36 Hour Day is a good book.
As far as the decisions you will have to make...There are no "right or wrong" ones. It is a decision you make at the time with the best interests of your wife and you in mind. As long as you can put your head on your pillow at night and you can tell yourself that you did the best you could that day there is nothing you should regret and you can sleep well knowing that you did the best that you could.
I loved the book, The 36-Hour Day by Nancy L. Mace & Peter V. Rabins
It explains things so well. It definitely helped me to understand what brain disease is, the different types and how to put myself in that perspective as well.
Your wife is not doing anything on purpose, her judgement, reasoning, and cognition is slowly deteriorating. She can perceive emotions...highly, so try not to show anger/frustration it will just make things worse for the both of you. You will need to learn that white lies are harmless and to let the little things and sometimes big things go too...I know I did, very quickly. I have locks on my cleaning supplies cabinet, medicine cabinet, refrigerator, and childproof knobs on my stove, now that I think about it I should also cover electrical outlets! I bought my mom activity toys to keep her busy, she needs to do something ALL day, TV is not cutting it. There are activity items for Alzheimer/Dementia but they are also expensive, I bought things that are also good for a toddler they worked for me and my mom is happy...colorful stickers on construction paper, Lincoln Logs, matching games with colors, shapes, letters, crayons and coloring books. I went from being a single working gal to having an 83 yr old daughter, it’s a life changing event for both!
This will be your ultimate challenge in your life, you do it all out of LOVE...whether you do it yourself until you can or you give that challenge to someone else or someplace else that has a team you are comfortable with. I’m 45 yrs old and resigned from my job last year to do this 24/7, I’m constantly researching and reading on this terrible disease. It will be hard without a doubt but there are joyful & pleasant times with your loved one too. So gentle hugs, caressing on her hand, a light back rub goes a long way.
Good luck, and I hope you make the decision that’s best for you.
You also need to understand this isn't going to get any better or easier. If you are already frustrated now, and I've been there so I understand, you probably need to go ahead and research Assisted Living facilities to place her in. Look for one that will let you transition to Medicaid if you run out of money. While you are doing that, you should also consult with an elder care attorney who can help guide you along the way and protect assets for your care later, while still providing for your wife during this time.
You need to start thinking about the dangers that are present in your home right now, and how your wife may get into trouble. For example, mixing ammonia and bleach together to clean and asphyxiating herself. Or trying to cook and leaving a pot on the stove. Or wandering off in the middle of the night. There are a ton of possibilities for what could happen to her if she's not closely watched 24/7 which is impossible for you to do, realistically. If she's not yet at the stage where she's exhibiting dangerous behaviors, it may not be far off.
You may want to look into Memory Care Assisted Living homes for your wife. I work in one and can tell you that I see lots of husband's and wives who have placed their spouse when they became too much to handle at home. Some come to visit twice a day and have a much better relationship now that they've relinquished their caregiver role.
Think about it as you read all about Alzheimer's and what to expect moving forward. Teepa Snow is on YouTube and particularly good at explaining the difficulties and frustrations associated with this dreadful disease. Knowledge is power.
Best of luck to you
I love him, for taking care of me all those years, that it was time for me to really take the reigns, and become the provider, comforter, caretaker, so he would feel save and secure.
The book, " Caretakers Handbook", and Alzheimer's Association, are great places to start. Also, Teepa Snow, a phycologist, has you tube videos available online.
I know there are times that I still get angry and what my husband says or does, (I have to bite my tongue,) but I have to let it role off me, because he is not the person I married anymore. I still love him and I will do whatever I have to, in the years to come, to make sure he is always save and I am there for him.
Patience is something we have to have, when we take on this responsibility.
Suggestion: be more observant, with whatever she is doing. Make sure to keep an eye on her. Example: I husband, took a scissors, from his night stand and proceed to injure himself. So, I took away all scissors. He had a cigarette lighter collection and a knife collection. I also took these away for safety reasons. He no longer drives, another precaution.
He is stubborn and bi-polar, argues and disagrees with everything I ask or say, so expect your wife will act according to how she is.
We all are going through the same things here. Be patient, kind and love her, that's all you can do.
To learn how to deal with your wife's behavior from this disease (which she can not help) I suggest watching youtube Teepa Snow video's. I found them very instructional on how to deal with my elderly Mom.
Good luck,
Jenna
I would also recommend getting a caregiver in, even an hour or two a day if you can. Give yourself a break. And, for critical behavior such as leaving the stove burners on or overflowing the bathtub, you may need more care-givers and/or consider if other steps are in order. Talk to a social worker if you can; the Alz Association (and Teepa Snow) personnel are very compassionate and understanding. Call them. You might benefit from a support group. Thanks for writing here. It not only helps and provides you support, it helps all of us deal with this. And, as I often or not often enough say to myself "But for the Grace of God Go I" (It is the only religious phrase I know).
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