I don't have a spouse with dementia but both of my parents did/do. My dad passed away a year ago and my mother is in nursing home. I have been dealing with my parents' situation for over 6 years with no help from anyone in my family or anyone at all to be honest. Neither one of my parents lived with me but I was dealing with both of them at different facilities at the same time and my dad at his home for part of the time.
Anyway, that is the reason I joined this support group. I have been alone in all of this and when I try to talk to family or friends about this they just don't get it and I end up feeling worse like nobody cares. So I agree with others who responded that you don't need to explain this to anyone because unless they have walked in your shoes they just aren't going to understand or be able to be as supportive as you would like them to be.
I have been reading posts and responding to posts here for about a week and I have to say that I am starting to feel a little better. I have found that I have the same feelings inside of me (that I thought were bad/wrong) that a lot of others have here and I am starting not to feel like there is something wrong with me for the feelings that I have. I think this is a great place to share your experiences and get some good advice. Anyway for me it is because all I really wanted was to have someone to listen to me and understand. So if that is what you are looking for I think this is a good place to share your story.
Emotionally, Mentally, Physically….that’s just the tip of the iceberg…and that’s just for the spouse! What about any responsibility you feel for others in your life? What about you? Don’t forget financially, medically, socially, spiritually, legally, sexually, culturally, hygienically. I am sure there are other headings I’m not thinking of.
Let’s just take hygiene. Personal hygiene. Environmental hygiene. Domestic hygiene. Food hygiene.
If you go to the top of this page and click on CARE TOPICS, you will find many topics under each letter of the alphabet. For A alone there are 23. Under each TOPIC are articles, questions and discussions.
YOU really don’t have time to be trying to educate someone else but you tell them you will loan them your spouse for a week and you’ll answer any questions they have when they bring him back home. Big Hugs
Most people don't want to hear about medical issues, so I only talk about this issue with the one person I know who has lived through it: no explanations necessary.
Empathy is earned through scar tissue only. Which is why you can never explain to someone what that scar tissue feels like. They have to walk in your shoes to be able to understand it.
Other's handle dementia care in a variety of ways; with in home caregivers coming in to help, by sending the loved one off to respite care on a regular basis, by placing the loved one in Memory Care Assisted Living, or by toughing it out alone and then burning out or suffering from compassion fatigue after a while.
I think the key is to know yourself and your own human limitations. What constitutes 'too much' and when to hold up the white flag of surrender and say ENOUGH. When to separate guilt from self-care, and the knowledge that love comes in many forms. That you can love a spouse with all of your heart and STILL have no other choice but to place him if his care becomes too burdensome for you to manage at home.
In the end, though, you don't have to explain yourself or your actions to anyone. You just have to reconcile your choices with yourself, and know that love is leading you to make the best choices for BOTH of you. That your husband is not the only person who matters in this marriage; that there are two of you who matter. Two lives of equal importance are on the line here. So you take that truth into consideration when making all of your decisions, and you move forward with faith and determination that you are doing the right thing for BOTH of you.
You don’t owe anybody any explanation, you do the best you can as we all do. i don't allow any of this nonsense and tell people talk to me once you do caregiving for a year.
I think the answer depends on your relationship to the person with dementia and those you are trying to explain to, and the reasons you need them to understand.
You mention a spouse. A spouse is the primary responsible party for their LO, so it could be a situation where it's not really necessary to go into those details with family. You might be better served, emotional support-wise, to talk with people in a similar situation, a support group or an online forum like this one. If the care becomes too much, look into professional help.
If other family members are criticizing your care it might be necessary to spell it out more to try to get them to understand why you must do things a certain way (with the end goal of stopping the criticism). Having them help you with care or at least observe for a while may help. It's fine to ask family members for help if you need it but beware of asking too much; they have lives and responsibilities too. A little help from family is no substitute for professional care if that is what's needed. The best thing you can do for yourself is not be stubborn about doing everything yourself.
Are you trying to explain this to your brother that you help him with Mom? Really, he should understand because Mom suffers from a Dementia according to your profile.
Like Funkygrandmom said, explain ur spouse is like having a 2 yr old toddler. The difference is toddlers learn, those with Dementia can't learn. They will worsen not get better. Dementia/ALZ is so unpredictable. One of the reasons I could not care give. I need structure and procedures. Like, I think I finally have it all sorted out and something out of the blue happens. How I handle it has a lot to do how much I am already doing at the time.
Write down the things you have to do for him daily. How long does it take you to do the task. Does he get up at night thinking its morning. How long does it take to get him back to bed. And then how long does it get u to go to sleep.
If this has to do with ur Mom because your not helping as much, then time for brother to place Mom if he is no longer able to do it.
Yes, who do you need to explain this to? If it’s appropriate, the best (only?) way to explain is to ask them to stand in for you for a day or two. Talking isn’t like doing it yourself.
It sounds that your brother is taking most of the load. He is the person you need to make sure understands – and perhaps he thinks that you don’t understand that he is carrying so much.
Who else is involved in this? Is it other family members - perhaps because you and brother are at the end, you are both talking about alternative care, and they are objecting? Please give a bit more information so we can understand the problem. Clearly there is a problem! Yours, Margaret
Unless someone is going through the same with their loved one(s), they will never completely understand. That's just the way life is. Until they've walked in your shoes, there is no way they can understand. BUT....there is good news out there for you. It's called a caregiver support group, and specifically one for folks caring for loved ones with dementia. Try "Googling" to see if you have one in your area. That's how I found mine while I was caring for my husband with vascular dementia 4 1/2 years ago now, and I can tell you with all honesty, that they literally saved my life! And although my husband has now been dead for 2 years, I still attend their meetings so I can help others still in the throes of caregiving, because as you already know it is the hardest job you've ever done, so if I can pass along something I learned along the way or just offer a shoulder to cry on, it is worth it. Only people that are going through what you are(or something similar)can really understand you, so don't waste your time trying to explain it to people that have no clue. And get online today and find you a support group. Some meet in person and others on Zoom, but either way, they will be a huge help to you. And if you can't find one, you can message me by clicking on my name, and I can get you hooked up with mine. I live in NC, but you can Zoom in from anywhere. We meet in person every Wednesday at 11:00, and have folks on Zoom as well and we meet on Zoom every Friday at 1:00. May God bless you and keep you.
Leiblein, one could compare taking care of an adult with dementia to that of taking care of a toddler. Except the "toddler" is 5 foot tall, 120 lbs. Easy to pick up a toddler when they fall, but difficult when the person is an adult.
Ever try to argue with a toddler, it's a losing battle, same with an adult with dementia. Toddlers can have temper tantrums, so do adults. Ever try to dress a fussy toddler, same can happen with an adult. Toddlers don't like the food you serve, same can be said with an adult.
Only difference is a toddler eventually learns how to do things on their own, an adult with dementia loses that ability and keeps going backward unlearning how to do things.
I remember when I was complaining about driving my parents all over hill and dale when a co-worker mentioned that my parents did that for me when I was a child. I said "true, but my parents weren't 65 when I was a child, big difference".
I’m pretty sure that until someone lives a situation day in and day out they won’t understand it no matter how much explanation they receive. Don’t spend a lot of time or energy trying to explain. And don’t try to do it alone
Who are you trying to explain this to? Anyone who has not done it really can't understand what it's like! If it really matters that this person understand, then do your best. If they want to argue about it or don't NEED to know, no need to give anything but the vaguest of information.
15 Answers
Helpful Newest
First Oldest
First
Anyway, that is the reason I joined this support group. I have been alone in all of this and when I try to talk to family or friends about this they just don't get it and I end up feeling worse like nobody cares. So I agree with others who responded that you don't need to explain this to anyone because unless they have walked in your shoes they just aren't going to understand or be able to be as supportive as you would like them to be.
I have been reading posts and responding to posts here for about a week and I have to say that I am starting to feel a little better. I have found that I have the same feelings inside of me (that I thought were bad/wrong) that a lot of others have here and I am starting not to feel like there is something wrong with me for the feelings that I have. I think this is a great place to share your experiences and get some good advice. Anyway for me it is because all I really wanted was to have someone to listen to me and understand. So if that is what you are looking for I think this is a good place to share your story.
ADVERTISEMENT
Emotionally, Mentally, Physically….that’s just the tip of the iceberg…and that’s just for the spouse! What about any responsibility you feel for others in your life? What about you?
Don’t forget financially, medically, socially, spiritually, legally, sexually, culturally, hygienically. I am sure there are other headings I’m not thinking of.
Let’s just take hygiene.
Personal hygiene.
Environmental hygiene.
Domestic hygiene.
Food hygiene.
If you go to the top of this page and click on CARE TOPICS, you will find many topics under each letter of the alphabet. For A alone there are 23. Under each TOPIC are articles, questions and discussions.
YOU really don’t have time to be trying to educate someone else but you tell them you will loan them your spouse for a week and you’ll answer any questions they have when they bring him back home. Big Hugs
Other's handle dementia care in a variety of ways; with in home caregivers coming in to help, by sending the loved one off to respite care on a regular basis, by placing the loved one in Memory Care Assisted Living, or by toughing it out alone and then burning out or suffering from compassion fatigue after a while.
I think the key is to know yourself and your own human limitations. What constitutes 'too much' and when to hold up the white flag of surrender and say ENOUGH. When to separate guilt from self-care, and the knowledge that love comes in many forms. That you can love a spouse with all of your heart and STILL have no other choice but to place him if his care becomes too burdensome for you to manage at home.
In the end, though, you don't have to explain yourself or your actions to anyone. You just have to reconcile your choices with yourself, and know that love is leading you to make the best choices for BOTH of you. That your husband is not the only person who matters in this marriage; that there are two of you who matter. Two lives of equal importance are on the line here. So you take that truth into consideration when making all of your decisions, and you move forward with faith and determination that you are doing the right thing for BOTH of you.
Best of luck.
i don't allow any of this nonsense and tell people talk to me once you do caregiving for a year.
You mention a spouse. A spouse is the primary responsible party for their LO, so it could be a situation where it's not really necessary to go into those details with family. You might be better served, emotional support-wise, to talk with people in a similar situation, a support group or an online forum like this one. If the care becomes too much, look into professional help.
If other family members are criticizing your care it might be necessary to spell it out more to try to get them to understand why you must do things a certain way (with the end goal of stopping the criticism). Having them help you with care or at least observe for a while may help. It's fine to ask family members for help if you need it but beware of asking too much; they have lives and responsibilities too. A little help from family is no substitute for professional care if that is what's needed. The best thing you can do for yourself is not be stubborn about doing everything yourself.
Like Funkygrandmom said, explain ur spouse is like having a 2 yr old toddler. The difference is toddlers learn, those with Dementia can't learn. They will worsen not get better. Dementia/ALZ is so unpredictable. One of the reasons I could not care give. I need structure and procedures. Like, I think I finally have it all sorted out and something out of the blue happens. How I handle it has a lot to do how much I am already doing at the time.
Write down the things you have to do for him daily. How long does it take you to do the task. Does he get up at night thinking its morning. How long does it take to get him back to bed. And then how long does it get u to go to sleep.
If this has to do with ur Mom because your not helping as much, then time for brother to place Mom if he is no longer able to do it.
It sounds that your brother is taking most of the load. He is the person you need to make sure understands – and perhaps he thinks that you don’t understand that he is carrying so much.
Who else is involved in this? Is it other family members - perhaps because you and brother are at the end, you are both talking about alternative care, and they are objecting? Please give a bit more information so we can understand the problem. Clearly there is a problem! Yours, Margaret
BUT....there is good news out there for you. It's called a caregiver support group, and specifically one for folks caring for loved ones with dementia. Try "Googling" to see if you have one in your area. That's how I found mine while I was caring for my husband with vascular dementia 4 1/2 years ago now, and I can tell you with all honesty, that they literally saved my life! And although my husband has now been dead for 2 years, I still attend their meetings so I can help others still in the throes of caregiving, because as you already know it is the hardest job you've ever done, so if I can pass along something I learned along the way or just offer a shoulder to cry on, it is worth it.
Only people that are going through what you are(or something similar)can really understand you, so don't waste your time trying to explain it to people that have no clue.
And get online today and find you a support group. Some meet in person and others on Zoom, but either way, they will be a huge help to you. And if you can't find one, you can message me by clicking on my name, and I can get you hooked up with mine. I live in NC, but you can Zoom in from anywhere. We meet in person every Wednesday at 11:00, and have folks on Zoom as well and we meet on Zoom every Friday at 1:00.
May God bless you and keep you.
Ever try to argue with a toddler, it's a losing battle, same with an adult with dementia. Toddlers can have temper tantrums, so do adults. Ever try to dress a fussy toddler, same can happen with an adult. Toddlers don't like the food you serve, same can be said with an adult.
Only difference is a toddler eventually learns how to do things on their own, an adult with dementia loses that ability and keeps going backward unlearning how to do things.
I remember when I was complaining about driving my parents all over hill and dale when a co-worker mentioned that my parents did that for me when I was a child. I said "true, but my parents weren't 65 when I was a child, big difference".
US translation:
*poop
*diaper
*trunk
What do you hope explaining the situation will bring you?
Will it help? To gain extra help or support? To get more time off work?
How can we help?