I received some advice from Leolonnie1 that has really stuck with me. "Live in the moment". My mom has declined to the point where she does not remember even distance memories very well. I was not sure if trying to talk about those (with a memory box) would be helpful or make her sad. Leolonnie1 suggest living in the moment. I have to tell you, it is not easy. But I have found that doing that provides so much relaxation, not only for my mom, but for me. Caregivers are usually busy worrying about the next task so it is not easy but very worth it (and I know it is not that simple but sometimes the simple things make a difference). Prayers and thoughts to you!
Caregiving for a person with dementia is very difficult, because they are not capable of giving much back. You have to channel your love for her. Some skills can be learned. Connect with a caregiver group like this one to learn more about what to expect. Also connect with a local social worker to discuss your and her options. Have a Plan B, if your spouse declines to the point where you are no longer able to care for your spouse by yourself. People with dementia are likely to decline further over the years. My mother got to the point where she "forgot" how to walk and needed to be taken around in a wheel chair. It sometimes took 2 people to transfer her from her bed to the wheel chair if she wasn't assisting. Then she forgot how to eat and had to be fed. She needed 24/7 care. She agreed to go to a senior residence while whe was still independent. We chose a continuing care facility where she eventually moved from independent living to memory care and to skilled nursing for her last few weeks. If it becomes too much for you, look into memory care facilities. Try to find one near you that your can visit often to oversee her care. The advantage of memory care facilities is skilled staff managed by experts in the field of assisted living. I learned a lot from the staff at my mother's facility. Try not to feel guilty about this. Not everyone is cut out to be a caregiver. It's better for you to visit her with love.
If you are a "care giver"...you are not just doing chores to be done. A caregiver enjoys meeting whatever the need is. If you want to get better...you need to care for yourself. Get plenty of rest and "help".
Sign up for TEEPA SNOW's webinars on-line. Be patient with yourself. This is not an easy situation to be in. Ask for help with local Alzheimer's Association. Gena / Touch Matters
Hubby and I took care of my mom for 5 years, when she had Alzheimer's. At first, I was overwhelmed by the whole thing, but when I started writng down funny things that happened, I felt better. Sometimes my mom would say something funny, and I laughed in spite of myself. Once, she wanted to tell someone that she had pounded the pavement, looking for a job (accounting) in NY after college, but what she said was, "I walked the streets of NY, if you know what I mean." My mom might have been a sweet talker, but she wasn't a street walker. I actually compiled the funny (and sometimes not so funny) aspects of this caregiving journey into a book called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." (I thought of the title when I was driving home from work 1 day, and I realized that my once broad life was reduced to the pressing health concerns of my mom and dog.) I found that finding humor, writing, walking,and talking to friends helped immensely. I had to remind myself that as much as I never thought my once bright mom would get Alzheimer's, I know she didn't think she would either. Neither one of us could have imagined how our lived would be upended by this, and we just did the best we could.
tomgil46: I applaud you for your post in wanting to be a better caregiver, truly. Alzheimer's is tough to bear for the caregiver. You may be able to garner information via the book, "The 36 Hour Day."
Whatever you can make light of, make light of it. My friend's father is my age. He lives with her. He's gotten to the point of not remembering where the bathroom is. She talks openly in front of him that he has Alzheimers. We laugh when he makes mistakes which lets him know everything is ok. Recently while visiting him, his face changed to looking concerned. He started saying someone needed to take him.....she interrupted 'No dad, this is home. We are home." He said, "Oh, yea, sure. and kinda laughed as he did." I laughed and told him I darn well wasn't gonna take him anywhere. She headed him off at the pass, b4 he became anxious. Hang in there and get support as others have advised.
I want to add one thing that was important to me while I was caring for my husband with Alzheimer's. Try to do things together that help you and him relax a little. For us it was listening to music. We listened only to music that we knew and could sing along with....I would sing, he would laugh! Going outside to a park where there's a lot going on is also good. We would go and sit at the edge of the lake where people were fishing, there were ducks in the water, children fishing from the dock, all cheerful sounds and a healthy outdoor atmosphere. Bring a lunch and special treats. This is good for you and for the patient. I also made pictures with my phone of everything that caught my eye, then I would share with him. And one more thing that's important....don't feel that you're in charge, and that everything that's done has to be done your way. This may seem like a good way to organize everything but you will feel better if you let your husband do what he wants, and you help him as best you can. This is healthy, a way of giving him control as much as possible. Also, If he gets angry at anything, back off, and let a few minutes pass before continuing. This will help you regain control of your emotions and help him get over the feeling of losing control of his feelings. Hope you're getting help from others too....at least talk to others about what you're doing.
What I have learned here is not how to be a better caregiver, but to be honest about my boundaries of self protection. I told my husband that I understood Alzheimer's would make him disappear and that I would need to make decisions about becoming a caregiver: I drew the line at abuse and incontinence.................not gonna do it, so I have come here to learn about alternatives. I may have to place him at some point and I need to know where and when and how to finance it.
The other important learning lesson is that while I'm learning about his illness and probable outcome, I should be making my end-of-life plans too. I don't want to burden my loved ones with being dependent and maybe even hostile. I needed to get going with an attorney or two and figuring out how to go out, "My Way."
There is help out there .. You will have to be diligent and spend as much time with your self help as you do with your loved one. The Alzheimer’s Association is a great source of info and has a 24/7 help line. Join a CareTakers/ CarePartners group . Read and learn more about the disease. You are not alone. The first few years of my partners decline really did a number on me . I was confused, frustrated and ANGRY. I was treating my partner in a way I was ashamed of. That is what brought me to an understanding of how the diseased has impacted not only HE but also ME. In the last 2 1/2 years , he is still declining but life at home is so very much better. * I know his brain is BROKEN and he will not be getting better. * I know he is not deliberately doing thing to spite me. * I know how every patient walks a different path . * I know that when I put my self in his shoes it breaks my heart . I’ve learned to acknowledge his losses . * I know I will still have days with frustration and anger . * I also know it is wasted time and energy . My loved one CAN NOT understand or change what has happened to him .* I know I have to take care of my self. These and many more are things I knew in my head but with the help of my group and a therapist , I now know them in my heart . I now longer have to prove that I am right. Thru no fault of his own he now lives in a different reality, a reality of his own . I hope this helps .
It's very good of you to post this reply. I just lost my husband of 54 years to Alzheimer's and I went through all the things you mention here: impatience, anger, and at the same time knowing I wasn't doing enough to help him as I would like to be helped. The best part is when you mention that it works better when you put yourself in his shoes. Now is not the time to criticize his behavior in any way - knowing he cannot control his emotions, and knowing that his emotions is most of what he left of his old way of being - is very important for him and for him. Thank you! What we share with others is important because while we may share the burden of the patient's came, everyone will be facing different set of circumstances.
It is a very difficult effort to be empathetic and at the same time a rock for a person that did not keep their side of the "bargain" of not breaking (abandoning you, cheated you in a kind of - bait and switch deal) either due to physical or mental disease.
I recently researched the - What is the origin of that part of our vows that say "in sickness and in health" and found that though there is a lot written on that subject there is no indication of who wrote it. It's a very clever line. Sounds romantic during the ceremony but it doesn't give the education that only being neck deep in the sh*t can give you. It doesn't tell you either about the enormity of the job or about anything near the many, many details regarding the supportive acts that you will be preforming, or about how you better start saving you butt off, of buy into LTC insurance at an early age, or that you better learn a hobby or musical instrument to help keep you company during hours and years of isolation, and maybe at the same time caring for children and parents.
To boot, if you were raised by cold disconnected parents, or you were an independent personality who may have been one to walk away as a good but lone wolf kind of being, then the early human kindness lessons very needed at times such as these will be something you'll have to learn on your own. It is possible. It will be rough, you will be exhausted but you will become someone you will like and be in awe of better than the person who you are now. It can be learned.
You Must join a support group. Mine meets on line. They not only meet they give lessons on how to do exactly what you're asking about. How to care better. How to find therapists for yourself. How to manage finances, etc, etc, etc, free. I get no benefit from saying that I love mine. Years ago I hated joining anything. I'm not a joiner, but I was loosing my mind and attended two others before the Insight Memory Care Ctr (IMCC). Their office is in Fairfax VA. They just opened another in Sterling VA.
The current group I attend (Insight Memory Care Center) has different levels of groups that meet online. Those that are new to this journey have their own group. I belong to the group that has been caregivers for 4, 15 and 20 years. There are a couple of newbies that prefer starting with us and it's perfectly okay. An acquantance of mine preferred the beginner's group because she was disappointed that (my interpretation) my group talked to each other as friends (on the subject of dementia, 97% of the time) and didn't keep trying to cure the disease by offering to each other different potions and exercises. We've already been through all those attempts. We sympathize and understand but it's like trying to poke a hole in water. Hope seems like the last thing to go.
My group rather discuss the latest decline experienced with their LOs, and ask for tips on how to, say, manage scenes in the bathroom because of the perhaps fear of water (mostly), or getting undressed, or letting go of something that was the almost part of the patient namely dirty clothes. Or which are the best diapers or home aid agency. They share names of male aids if that is needed over females aids. We talk about movies. Country wide their are adult DAY CARE services but IMCC is the only adult Memory Care day care center. Our zoom group has attendees from Massachusetts, and Connecticut and yet it's HQ is in VA.
Whatever need to learn you will find it online. Talk to a geriatric care manager. Speak to a social worker at a hospital. Each time you hit a wall say to that person - I understand you may not be able to help me but can you advise me where to go. You can contact IMCC just for information. There are kind people in this culture all over the place.
Aging Care is also a super resource. I value it too, very much. It has been very helpful in many ways especially in the middle of the night when I'm alone, & I even simple need to connect to my "family" of caregivers.
Many care givers overlook their own mental health. Seek help if you are feeling overwhelmed. There are services that can come to your home and provide help.
The pain of having lost (past tense!!) the spouse you knew and loved to Alzheimer’s is more than enough to bear. Why are you supposed to emotionally attach to an unlikable Alzheimer-created stranger who destroyed your spouse’s mind, inhabits the body and turned your life upside down?
I find there is a point in time where an event causes the death of the relationship that was and creates a new relationship of need and caregiving. (It may include unsupported grieving that doesn’t feel legitimate because the person is still breathing.) Even in the best circumstances when there is love and gratitude, the new relationship is against an uneven backdrop of taker and giver.
Is this stranger you’re caring for giving you emotional support? Or was it your spouse who did?
Are you battling with yourself because there are glimpses of the spouse you love that the stranger hasn’t completely obliterated? Are you grieving and experiencing the emotional numbness that comes with it while stuck in an Alzheimer’s limbo where you never know which minute you’ll be with your spouse or the uncaring Alzheimer enemy? And maybe, blaming them both for the chaos? And then feeling guilty? Which leads to numbness and the label “emotionally lacking”?
Sadly, in a country with such vast resources and presumed good will, your options will be based on cost as much as anything else. They shouldn’t be based on false negative self-worth.
Alzheimer’s assaulted your life and is trying to destroy your self-worth. Don’t let it.
You may want emotional buckets: the spouse that was gets your love, the spouse who is MIA gets help and the Alzheimer’s enemy gets your anger. And there’s an overlooked but critical 4th bucket that deserves time, energy and emotional nurturing for healthy happy living: You.
Some of the "easiest" are sometimes the most difficult. Learn to ask for help. More importantly learn to accept help. Know when you can not do any more. And when you reach that point ask yourself "Is this enough" or do you need to either hire help or place him in a MC facility that has staff 24/7. (I told myself that I would keep my Husband at home as long as it was SAFE. Safe for HIM for me to care for him and safe for ME to care for him at home.) Look for as many resources that you can find that will help. Area Agency on Aging, are there services that you or he may qualify for? Alzheimer's Association, They have a 24/7 number for any question you have. Adult Day Care, are there any in your area? Is he a Veteran? If so the VA might be of help depending on service it might be a little help or a LOT! Would he qualify for Hospice? If so you will get all the equipment and supplies you will need along with an amazing amount of support.
Your local (and even not local due to virtual options) Alzheimer’s association and council on aging will have support groups. They are very helpful in giving you “tools” to help. It also helps talking to people who are walking in your shoes.
Try to think of and treat your spouse as you might treat someone you did not have a personal with. You might feel a little more patience with and tolerance of your spouse's limitations.
Get any outside help you are able to get and do not berate yourself for not being a "natural" care giver. Frusttation, exasperation, and exhaustion are part of the package. A live or virtual Care Giver Support Group would be a place to share your story and hear how others may be dealing with similar emotions.
I was a mess with my mother. I chose online counseling. It was a God send. My counselor understood and helped me with my emotional stuff. It never gets easy but can get better. Good luck..
Hello there, I’m answering based on my faith walk with Jesus Christ. If you are a believer in the Lord and His Word, it doesn’t mean that you’re automatically filled with love and capable of being a caregiver, but it does mean that Jesus and His Holy Spirit will empower you to care provide with the love, patience, kindness, gentleness and humility (these are just some of the fruit of the Holy Spirit outlined in Galatians 5) that is needed for your spouse. I am 48 years old and have had my father (age 88) with me for over three (3) years now - asking God why I was given this difficult task and feeling more than unequipped to continue. I resented my dad for a while and was emotionally distant at times, but knew that I needed my heart to change - this I could not do on my own. Reading the Bible and seeing how Christ loved people and was full of mercy and grace really helps me. Mostly, when I read how much He loves me - when I know how undeserving I am of His love, but still He is here and never has forsaken me really speaks to His faithfulness. I pray daily that He change my heart, my mind and my attitude, not only toward my dad but towards people period. I’ll tell you, some days are better than others, but I’m striving to imitate Him and please Him especially in this area of my life. Not too long ago I would wake up in the mornings already feeling defeated, not wanting to deal with my dad and wishing he was not here with me, but my heart is gradually changing. I’ll be praying for you and your situation, but please know there is no situation too big or challenging for the Lord. He loves you and your spouse. Please take your burdens to Him and seek His Word for strength and guidance.
“Your heart” can find alternatives to caring 24/7/365 for your father that are NOT caring for him with your own hands.
I found a beautiful nearby residence for my mother and another LO, by listening to His guidance to find another way to care for them in a Faith based setting near my home.
By His Grace, they received (and are receiving) wonderful care, they know that I love them and honor them, and I too am able to enjoy a rewarding life with the rest of my family.
Our God does not ever ask of us more than we are able to do. Hope you are letting Him speak to you in many ways.
The best thing you can do is to know and accept what your limitations are. It's ok to not have the emotional skills. Not all of us are cut out to be hands on caregivers, that's why your husband has so many other options when it comes to his care. You can hire some outside help to assist you, take him to an adult daycare center up to 5 days a week, or have him placed in the appropriate facility where he will receive the 24/7 care he needs and you can just get back to being his wife. Only you can decide what is best for not only him but for you as well.
And if I can add one more thing. getting educated in the disease of dementia, is very helpful as well, as it will better equip you with the tools needed for what can be a very long journey. Teepa Snow has many great videos on YouTube you can watch along with several great books as well. And the book The 36 Hour day is very helpful as well. I wish you the very best going forward.
It's just really difficult when a person we love seems to change into someone else. The most helpful thing told to me at first by many people was that I could not take on the care of my mom alone. My brother was awful at it. He got too angry at her for forgetting. You say you are high-strung. He was too. I'm naturally very patient and calm, but it was incredibly difficult for me as well. The first help I got was for cleaning the house, which Mom allowed, then I moved in with her, and because I was teaching full time, I hired in home care for many years, and eventually she had to go to assisted living. Even with help it takes over our lives and that is what causes the most stress I think. Now that she is gone, I realize caring for her was the most important thing I ever did. And it was the most difficult as well. I've spent the last 6 months doing a series of paintings of her at the end of her Alzheimer's journey as my way through the grief. What helped both her and me the most was being able to go into that strange world with her, to imagine and make-believe when it was appropriate to do so. Maintain your sense of humor and creativity though it and emotionally you will be fine. Exhausted, but fine.
I'm so sorry. It's absolutely devastating when your partner disappears and becomes someone else. The the exhaustion and helplessness you must feel vs. the desire to keep him safe and calm, and the sorrow of facing life without him…it's a tremendous burden for anyone to carry.
This article lists a lot of resources. I also hope you'll get as much help as you can, through respite visits and other family members, professional caregivers, etc.
Be patient with yourself. This is not an easy situation to be in.
Ask for help with local Alzheimer's Association.
Gena / Touch Matters
Take one day at a time.
Appreciate and celebrate your successes and don’t beat yourself up when there is a setback. There are lots of setbacks.
You can’t “win” so humbly accept your place as a gracious good sport.
Take plenty of breaks where you can. Plan ahead so your breaks can be somewhat meaningful (not just “wasted” time spent wondering what to do).
Appreciate your loved one. Every day.
Allow yourself to find humor in the funny things. Allow yourself the grace to cry on the hard days.
Someday you will look back on this time as a special time.
And one more thing that's important....don't feel that you're in charge, and that everything that's done has to be done your way. This may seem like a good way to organize everything but you will feel better if you let your husband do what he wants, and you help him as best you can. This is healthy, a way of giving him control as much as possible. Also, If he gets angry at anything, back off, and let a few minutes pass before continuing. This will help you regain control of your emotions and help him get over the feeling of losing control of his feelings.
Hope you're getting help from others too....at least talk to others about what you're doing.
The other important learning lesson is that while I'm learning about his illness and probable outcome, I should be making my end-of-life plans too. I don't want to burden my loved ones with being dependent and maybe even hostile. I needed to get going with an attorney or two and figuring out how to go out, "My Way."
I recently researched the - What is the origin of that part of our vows that say "in sickness and in health" and found that though there is a lot written on that subject there is no indication of who wrote it. It's a very clever line. Sounds romantic during the ceremony but it doesn't give the education that only being neck deep in the sh*t can give you. It doesn't tell you either about the enormity of the job or about anything near the many, many details regarding the supportive acts that you will be preforming, or about how you better start saving you butt off, of buy into LTC insurance at an early age, or that you better learn a hobby or musical instrument to help keep you company during hours and years of isolation, and maybe at the same time caring for children and parents.
To boot, if you were raised by cold disconnected parents, or you were an independent personality who may have been one to walk away as a good but lone wolf kind of being, then the early human kindness lessons very needed at times such as these will be something you'll have to learn on your own. It is possible. It will be rough, you will be exhausted but you will become someone you will like and be in awe of better than the person who you are now. It can be learned.
You Must join a support group. Mine meets on line. They not only meet they give lessons on how to do exactly what you're asking about. How to care better. How to find therapists for yourself. How to manage finances, etc, etc, etc, free.
I get no benefit from saying that I love mine. Years ago I hated joining anything. I'm not a joiner, but I was loosing my mind and attended two others before the Insight Memory Care Ctr (IMCC). Their office is in Fairfax VA. They just opened another in Sterling VA.
The current group I attend (Insight Memory Care Center) has different levels of groups that meet online. Those that are new to this journey have their own group. I belong to the group that has been caregivers for 4, 15 and 20 years. There are a couple of newbies that prefer starting with us and it's perfectly okay. An acquantance of mine preferred the beginner's group because she was disappointed that (my interpretation) my group talked to each other as friends (on the subject of dementia, 97% of the time) and didn't keep trying to cure the disease by offering to each other different potions and exercises. We've already been through all those attempts. We sympathize and understand but it's like trying to poke a hole in water. Hope seems like the last thing to go.
My group rather discuss the latest decline experienced with their LOs, and ask for tips on how to, say, manage scenes in the bathroom because of the perhaps fear of water (mostly), or getting undressed, or letting go of something that was the almost part of the patient namely dirty clothes. Or which are the best diapers or home aid agency. They share names of male aids if that is needed over females aids. We talk about movies. Country wide their are adult DAY CARE services but IMCC is the only adult Memory Care day care center. Our zoom group has attendees from Massachusetts, and Connecticut and yet it's HQ is in VA.
Whatever need to learn you will find it online. Talk to a geriatric care manager. Speak to a social worker at a hospital. Each time you hit a wall say to that person - I understand you may not be able to help me but can you advise me where to go. You can contact IMCC just for information. There are kind people in this culture all over the place.
Aging Care is also a super resource. I value it too, very much. It has been very helpful in many ways especially in the middle of the night when I'm alone, & I even simple need to connect to my "family" of caregivers.
I find there is a point in time where an event causes the death of the relationship that was and creates a new relationship of need and caregiving. (It may include unsupported grieving that doesn’t feel legitimate because the person is still breathing.) Even in the best circumstances when there is love and gratitude, the new relationship is against an uneven backdrop of taker and giver.
Is this stranger you’re caring for giving you emotional support? Or was it your spouse who did?
Are you battling with yourself because there are glimpses of the spouse you
love that the stranger hasn’t completely obliterated? Are you grieving and experiencing the emotional numbness that comes with it while stuck in an Alzheimer’s limbo where you never know which minute you’ll be with your spouse or the uncaring Alzheimer enemy? And maybe, blaming them both for the chaos? And then feeling guilty? Which leads to numbness and the label “emotionally lacking”?
Sadly, in a country with such vast resources and presumed good will, your options will be based on cost as much as anything else. They shouldn’t be based on false negative self-worth.
Alzheimer’s assaulted your life and is trying to destroy your self-worth. Don’t let it.
You may want emotional buckets: the spouse that was gets your love, the spouse who is MIA gets help and the Alzheimer’s enemy gets your anger. And there’s an overlooked but critical 4th bucket that deserves time, energy and emotional nurturing for healthy happy living: You.
Learn to ask for help.
More importantly learn to accept help.
Know when you can not do any more. And when you reach that point ask yourself "Is this enough" or do you need to either hire help or place him in a MC facility that has staff 24/7.
(I told myself that I would keep my Husband at home as long as it was SAFE. Safe for HIM for me to care for him and safe for ME to care for him at home.)
Look for as many resources that you can find that will help.
Area Agency on Aging, are there services that you or he may qualify for?
Alzheimer's Association, They have a 24/7 number for any question you have.
Adult Day Care, are there any in your area?
Is he a Veteran? If so the VA might be of help depending on service it might be a little help or a LOT!
Would he qualify for Hospice? If so you will get all the equipment and supplies you will need along with an amazing amount of support.
Get any outside help you are able to get and do not berate yourself for not being a "natural" care giver. Frusttation, exasperation, and exhaustion are part of the package. A live or virtual Care Giver Support Group would be a place to share your story and hear how others may be dealing with similar emotions.
I found a beautiful nearby residence for my mother and another LO, by listening to His guidance to find another way to care for them in a Faith based setting near my home.
By His Grace, they received (and are receiving) wonderful care, they know that I love them and honor them, and I too am able to enjoy a rewarding life with the rest of my family.
Our God does not ever ask of us more than we are able to do. Hope you are letting Him speak to you in many ways.
You can hire some outside help to assist you, take him to an adult daycare center up to 5 days a week, or have him placed in the appropriate facility where he will receive the 24/7 care he needs and you can just get back to being his wife.
Only you can decide what is best for not only him but for you as well.
And if I can add one more thing. getting educated in the disease of dementia, is very helpful as well, as it will better equip you with the tools needed for what can be a very long journey. Teepa Snow has many great videos on YouTube you can watch along with several great books as well. And the book The 36 Hour day is very helpful as well.
I wish you the very best going forward.
This article lists a lot of resources. I also hope you'll get as much help as you can, through respite visits and other family members, professional caregivers, etc.
https://www.caregiver.org/news/emotional-support-spousespartners-individuals-dementia/