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I am trying to adjust to increased responsibility and role reversal. My husband has: cognitive and memory issues, essential tremors, a-fib, copd, depression, irritability, can no longer drive, and had headaches and hearing issues.
The hardest thing I ever had to do but bring my husband to a Memory Care facility. I cried all the way home. At least he now had a team of people taking care of him; not just me. It was the best decision I have ever made. I'm praying that God will give you the resources and help you need. It's a hard road.
You cope by educating yourself about all that your husband has going on, and by asking for and getting any help that you may need not only in his care, but for around the house as well. You are stronger than you know and can handle a lot more than you think. We as caregivers do what we have to for the ones we love, while trying best we can to take care of ourselves as well. I would look into taking your husband to your local Adult Daycare Center several days a week to give you a bit of a break. He can be there 5 days a week up to 8 hours a day and they will feed him breakfast, lunch and a snack and keep him occupied with all kinds of fun activities. They will also pick him up and drop him back off if needed. There is a charge(in the city I live it's $55/day) but they are worth every penny, and if money is an issue they do offer financial help. You can also call your local Senior Services and Area Agency on Aging to see what kind of help may be available for you and your husband. And of course if he is a veteran the VA does offer aide and assistance for him. You must now do your homework to find out what kind of help you can get for the 2 of you. My late husband had vascular dementia, a massive stroke, essential tremors in his non paralyzed hand, sepsis and septic shock, seizures, and I'm sure there's more things I'm forgetting, but I was able to care for him in our home until his death in 2020. Was it easy? That would be a BIG no. It was the hardest thing I've ever done, but I was bound and determined to give him the best possible care I could because I knew that if the tables were reversed, he would have done the same for me. Now all of that being said, not everyone is cut out to be a hands on caregiver, and that's ok too. If your husbands care is getting to be just too much for you, you may have to start looking into facilities that will meet his needs where you can just be his loving wife and advocate and not his overwhelmed caregiver. Only you can decide what will work best for the 2 of you. I wish you well as you take this very difficult journey with your husband.
I retired early care for my late husband at home after his frontotemporal degeneration diagnosis. I did have him go to an adult day care center 3 days a week to give me a break. Eventually, the four days he was at home got to be too much. Most of my friends still worked outside the home. I tried to get together with them in the evenings. But one time in October, our next door neighbor called me. "You've got to get home now!" "Why?", I asked. She told me he wandered into their driveway wearing no shirt and only flip-flops and shorts. Well, that ended my evenings away. A few months after that he was hospitalized at an academic medical center. The neurology resident, neurology fellow, and faculty attending neurologist all said he needed long-term care full-time. I called our priest and asked, "Aren't I abandoning my husband if I do this? Aren't I breaking my marriage vows (...in sickness and health...)". He said, 'Absolutely not. You're honoring them by putting him in a place where he will be safe and secure." I chose the long-term care center where his personal neurologist (also a medical school professor) was the facility's medical director. He and/or his nurse practitioner were there every week and available by phone or e-mail at other times, One of the best decisions I ever made.
Danielle, I'm caregiving my husband too. He's 20 years my senior and our once great relationship has changed with caregiving. There's wonderful support and advice on this site. However, it's much different when caregiving your spouse compared to a parent. Our sense of future, our dreams of enjoyable retirement are sacrificed. We become nurses (without the benefit of training or days off) instead of wives. This I miss the most. It's quicksand and easy to lose you to the overwhelming caregiving existence. Best I can offer is to try to keep your head above water any way you can. It's ok to detach. It's ok to seek placement when the time comes. Reject judgment from others that aren't hands on. FB has a Well Spouse page too. It's a damn hard road.
I care for my husband in the mid-stages of dementia and I understand. You’ve received a lot of good advice here. I started journaling to process some of things we are experiencing. Following is an excerpt from one of my entries on things I have learned, but haven’t read about elsewhere.
I pray. It’s the most important thing I do. It’s the first thing I do (when possible) when I rise and I am learning more about that, too and trying to keep a connection to Jesus, talk to him during the day and listen for answers. And he does answer.
I have learned that with the progression of dementia, the patient’s body can forget how to regulate it’s temperature. So, he is cold all the time and I couldn’t understand it, as he was always the one who was too hot. Right now, it is 84 degrees out, the a.c. Is set on 78, the back door is open and he is sitting in front of our lit fireplace.
I have learned that stalking is a symptom of dementia. It frustrated me at first, since God knows I need breaks whenever I can get them. But I’m his lifeline and I need to allow him to make those connections. He is telling me that he needs something.
I have learned that although I am genuinely hooked up and never catch up on my To Do List, I think I was using my busy schedule to distance myself from him and the stress of caring for someone with dementia.
I have learned to take note of the location of important items, like watches and money clips and all manner of favorite items. When he loses things, which is multiple times every day, it helps to keep him calm, when I can quickly find them.
I have learned that his convictions that someone is stealing from him is likely a phase… or at least that’s what my friend Nurse Sandy said. And her mother had Alzheimer’s. Praying that passes.
I have learned to keep a close eye on our Amazon account, as he will order the same things over and over. When he order 7 Rolex watches one week and even Amazon cut him off, we were able to set up a different account for him with a low limit.
I have learned that I don’t always have to tell him the things that he doesn’t remember or is confused about. It’s not like he’ll remember later and it can upset him.
I have learned to continue to talk to him like I talked to the man I married. It’s easy to slip into speaking to him like he’s a child when he has so much trouble having a normal conversation, but that doesn’t mean I can’t have a normal conversation.
I have learned that though he may not always understand the things I tell him, he does pick up on emotions and attitudes and they can be hurtful.
I have learned that if I plan his day, tell him what is coming up and make a concerted effort to do things with him that he may enjoy, the agitation and desire to do things he can’t is less problematic.
I have learned that if I shower him with love and affection, it’s like a balm for him and helps him to feel secure. I have learned not to focus on myself and my reactions to him and to try to figure out what he needs when he is difficult, but unable to communicate.
I know an old man in our neighborhood who nursed his wife through Alzheimer’s until she passed. One of the things he told me was that it was very hard, but that it made him a better person. That is my goal.
So, so hard. How do you not feel victimized by the burden? I feel so depressed by my husband's dementia leading to his INability to understand and empathize with my experience or needs. I know it's organic, not intentional, but how do you keep your "emotions and attitudes" to yourself. I try for that but I feel so fake and like I'm turning into an inauthetic shell of a person. That doesn't feel like a " better person."
You start by learning as much as you can about his conditions. I Googled a lot of stuff, including questions about how to deal with certain behaviors or difficulties. And learned a lot!
This has been a role reversal for me as well, since I deferred to my husband as the primary decision maker and leader of our household. I appreciated his strength, and his ability to take care of me. Now, I have to do everything myself, without my biggest supporter. He suffered a massive stroke and significant brain damage 10 years ago. He doesn't walk, talk, eat solid food, he can't use the computer, the TV remote, or a phone, and he's in diapers. It's like taking care of a 180 pound infant. At first I went into this with strong motivation, to give the best care possible, and to try and enjoy the remainder of our time together. We were only 53 at the time, and I had to quit my job to stay home with him. The first couple years, I cried a lot. I prayed and begged the universe a lot - to bring him back to his former self, at least somewhat. That, of course, hasn't happened, and over the years, I have become burned out, frustrated, emotionally and physically drained. My husband's condition isn't getting worse, or better, he's just the same every day; unable to do anything, and relying on me to do everything for him. I'm not ready to give up, but as others have suggested here, know your limits, and when to place him in a care facility. You may not be able to provide the care he needs. You both will benefit from letting medical professionals and caregivers provide the care he needs.
My husband had many of the same issues as your husband. I've detailed my story in past posts and won't go into it here. Suffice it to say we never really had a good marriage and the role reversal only served to aggravate him more.
Our son moved in due to circumstances in his life and this ended up being a big help. Having a third person in the house caused my husband to behave better. That was one way that helped me cope. Also, because our son was here, I was able to get out one morning a week. To cope, you need your "me time." Carve it out and do it without guilt. You need a listening ear, one that won't take off when you are honest with them. For that, you might need to hire a counselor. Seriously, friends and family don't want to hear it all, even if they say they do.
Over my husband's objections, I started attending a local church. (My husband had been a preacher for thirty-plus years, I'll just say he was not qualified for the role.) Just those two hours on Sunday morning, being with others and listening to good preaching was very helpful to me.
My husband began to be incontinent with #2. After the first episode, I should have begun thinking about placement. BM is not something I have ever been able to handle (even as a mom changing diapers) and to have him yelling at me because I was gagging was just wrong for me to tolerate. After the third episode, my other son approached me about moving his father to Memory Care. Within a month, heart failure causing his kidneys to shut down ended his life, so I never had to go through with a move.
Looking back, I wish I had looked into placement after the first BM episode and had a plan in place. While it is difficult to think about, reality is that you just might have to do that. We don't get "hero awards" for sticking it out to the very end or doing it alone. Some of us have the grace to do that. I was not one. We tried hospice care at home and he was so hostile and uncooperative that it was was relief to me to send him to a hospice house.
You cope by not going through this journey alone, by being honest when you need help. This forum can be a great source of help, information, direciton, and sometimes, just sime straight up "you need to hear this" talk.
You cope by not allowing yourself to be verbally, emotionally, spiritually, psychologically, or physicallyt abused. You learn the art of walking away.
You cope by having a plan in place for the future (and be sure your family knows the plan as well).
You cope by choosing to not feel guilty because none of this is your fault. Realize that even now, you are probably starting the grief journey as you watch your husband become a different man than you used to know.
Wow...you have your hands full....Cognitive/Memory issues, tremors, Afib, COPD, depression, irritability, can't drive, hearing issues.
At least he's not driving, one worry to check off your list. Irritability/depression...most all have it, aging and poor health is no picnic. COPD and Afib? In the Top Ten of serious conditions. Your husband may need more care than you can provide by yourself.
You have the main responsibility of everything dumped on you now. Finances, bills, shopping, cooking, house cleaning, laundry, driving, doctor visits and worrying about everything for the two of you. Did I have it right? You are going to eventually need HELP.
I would assume neither of you work and are both retired? Live alone, without kids or relatives? You can call your County for possible programs and help available. You can get your groceries and medications delivered. Any way to save time is a priority.
You should get a binder or pocket file for all the stuff you need to keep organized and tracked. Your bills, banking, his doctors names and numbers, with all the Log Ins/passwords for the medical portals. Keep it all in one place.
Most of all, try to take care of yourself. Get enough sleep, eat decent, get help with housekeeping, and try to stay calm. If you fall apart, everything else does. Hopefully you have friends or family in your area for moral support.
At least you found the right place. Lots of good advice will come. You are stronger than you think, so learn what you can and find the right help. Taking him to Adult Daycare a few days a week will take the pressure off. Wishing you strength to get through this!
Wow! Where to begin? Wife and I began our journey in 2018. First a bit of ciphering difficulty, then progression to now, with the 36 hour day. I am determined to keep her home as long as possible. Many of my friends have been able and are great examples! Although I miss my best friend and advisor, I have had lots of help from family, friends and church. Some of whom have gone through this journey with their spouse. Some of the advice I’ve received includes joining a support group and using a day care facility. These haven’t worked for me, although I did try them. Finally, after much urging from my support system, I have called a local hospice. What a wonderful program! No matter your journey, and they are all different, do your research on the particular disease(s), evaluate all the programs available to you, get all the advice you can, and make your own decisions. Besides all individuals being different, all the types of dementia being different, and all manifestations being different, you have to decide your own path because after this has passed, you will remain. Take care of yourself! If you aren’t physically and mentally fit, you can’t be the best caregiver! I apologize for the rambling, that’s just me. Peace and blessings!
You are lucky to have had such a great support system. Many of us don't, through no fault of our own.
My hope is that possible support system people all over the world will read your post and decide, "Wow! I could help someone! Maybe I should drop by my neighbor's and offer to sweep out their garage! Or take them half of the spaghetti I made today!" (Instead of saying they'll be glad to help and not knowing how, so they never do.) Even the little things count when it comes to helping caregivers.
My husband has Parkinson's and cognitive decline. After a fall, he became bedbound. The fall was back in January 2023. Role reversal began several years before his fall. I became the rock that he was tethered to for stability. When I realized he was never going to get out of bed and walk again, the adjustment was hard. I do have daily help that does bed baths, diaper changes, feeds him, and is another person for him to talk to and joke with, when he feels like it. Hospice Nurse comes once weekly since he's had some medical complications. I will care for him at home, with help, as long as it's safe for both of us to do such. I learned to accept and even ask for help, instead of wearing myself down. I realized that if I break down, I'm no good to my husband. I set up a trust, in case I die before him. I gave instructions for family to call APS and have that agency be his guardian in event of my death. He can be placed in SNF at that time. No niece or nephew will want to take care of a bedbound uncle in his 70s. The appointed family member trustee will pay the bills for his care, thru the trust. I also prepaid burial expenses for us. We have no children, so my focus was having a plan for help now, and the future. It took me 18 months from his becoming bed-bound to fully accept and act on the fact that I needed a plan in case I die first. A lot of posters on this site will explain the importance of self care, so we don't become the ones who die before the spouse we are caring for. It's absolutely true.
Danielle, I have also entered into a very similar situation. This website has been very very helpful to me, just reading the support, sometimes resources (like today--adult day care), and reading what the next stages of dementia are like. I can prepare my inner self for them. I agree with everyone else to get as much info on his conditions as possible. He has ruined our finances, so Memory and Assisted Living is not possible on our budget, but I have looked into a Transfer on Death Deed for our home to go to our children so the state can't take it after I die, and other matters to protect my future life. You are so very busy now, but look after your needs both for now and in the future, and God Bless, dear.
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APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
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APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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You are stronger than you know and can handle a lot more than you think.
We as caregivers do what we have to for the ones we love, while trying best we can to take care of ourselves as well.
I would look into taking your husband to your local Adult Daycare Center several days a week to give you a bit of a break. He can be there 5 days a week up to 8 hours a day and they will feed him breakfast, lunch and a snack and keep him occupied with all kinds of fun activities. They will also pick him up and drop him back off if needed.
There is a charge(in the city I live it's $55/day) but they are worth every penny, and if money is an issue they do offer financial help.
You can also call your local Senior Services and Area Agency on Aging to see what kind of help may be available for you and your husband.
And of course if he is a veteran the VA does offer aide and assistance for him.
You must now do your homework to find out what kind of help you can get for the 2 of you.
My late husband had vascular dementia, a massive stroke, essential tremors in his non paralyzed hand, sepsis and septic shock, seizures, and I'm sure there's more things I'm forgetting, but I was able to care for him in our home until his death in 2020.
Was it easy? That would be a BIG no. It was the hardest thing I've ever done, but I was bound and determined to give him the best possible care I could because I knew that if the tables were reversed, he would have done the same for me.
Now all of that being said, not everyone is cut out to be a hands on caregiver, and that's ok too. If your husbands care is getting to be just too much for you, you may have to start looking into facilities that will meet his needs where you can just be his loving wife and advocate and not his overwhelmed caregiver.
Only you can decide what will work best for the 2 of you.
I wish you well as you take this very difficult journey with your husband.
"It's a damn hard road" about sums it up. My spouse is 14 years older than me.
I pray. It’s the most important thing I do. It’s the first thing I do (when possible) when I rise and I am learning more about that, too and trying to keep a connection to Jesus, talk to him during the day and listen for answers. And he does answer.
I have learned that with the progression of dementia, the patient’s body can forget how to regulate it’s temperature. So, he is cold all the time and I couldn’t understand it, as he was always the one who was too hot. Right now, it is 84 degrees out, the a.c. Is set on 78, the back door is open and he is sitting in front of our lit fireplace.
I have learned that stalking is a symptom of dementia. It frustrated me at first, since God knows I need breaks whenever I can get them. But I’m his lifeline and I need to allow him to make those connections. He is telling me that he needs something.
I have learned that although I am genuinely hooked up and never catch up on my To Do List, I think I was using my busy schedule to distance myself from him and the stress of caring for someone with dementia.
I have learned to take note of the location of important items, like watches and money clips and all manner of favorite items. When he loses things, which is multiple times every day, it helps to keep him calm, when I can quickly find them.
I have learned that his convictions that someone is stealing from him is likely a phase… or at least that’s what my friend Nurse Sandy said. And her mother had Alzheimer’s. Praying that passes.
I have learned to keep a close eye on our Amazon account, as he will order the same things over and over. When he order 7 Rolex watches one week and even Amazon cut him off, we were able to set up a different account for him with a low limit.
I have learned that I don’t always have to tell him the things that he doesn’t remember or is confused about. It’s not like he’ll remember later and it can upset him.
I have learned to continue to talk to him like I talked to the man I married. It’s easy to slip into speaking to him like he’s a child when he has so much trouble having a normal conversation, but that doesn’t mean I can’t have a normal conversation.
I have learned that though he may not always understand the things I tell him, he does pick up on emotions and attitudes and they can be hurtful.
I have learned that if I plan his day, tell him what is coming up and make a concerted effort to do things with him that he may enjoy, the agitation and desire to do things he can’t is less problematic.
I have learned that if I shower him with love and affection, it’s like a balm for him and helps him to feel secure. I have learned not to focus on myself and my reactions to him and to try to figure out what he needs when he is difficult, but unable to communicate.
I know an old man in our neighborhood who nursed his wife through Alzheimer’s until she passed. One of the things he told me was that it was very hard, but that it made him a better person. That is my goal.
And learned a lot!
This has been a role reversal for me as well, since I deferred to my husband as the primary decision maker and leader of our household. I appreciated his strength, and his ability to take care of me. Now, I have to do everything myself, without my biggest supporter. He suffered a massive stroke and significant brain damage 10 years ago. He doesn't walk, talk, eat solid food, he can't use the computer, the TV remote, or a phone, and he's in diapers. It's like taking care of a 180 pound infant.
At first I went into this with strong motivation, to give the best care possible, and to try and enjoy the remainder of our time together. We were only 53 at the time, and I had to quit my job to stay home with him.
The first couple years, I cried a lot. I prayed and begged the universe a lot - to bring him back to his former self, at least somewhat. That, of course, hasn't happened, and over the years, I have become burned out, frustrated, emotionally and physically drained. My husband's condition isn't getting worse, or better, he's just the same every day; unable to do anything, and relying on me to do everything for him.
I'm not ready to give up, but as others have suggested here, know your limits, and when to place him in a care facility. You may not be able to provide the care he needs. You both will benefit from letting medical professionals and caregivers provide the care he needs.
Our son moved in due to circumstances in his life and this ended up being a big help. Having a third person in the house caused my husband to behave better. That was one way that helped me cope. Also, because our son was here, I was able to get out one morning a week. To cope, you need your "me time." Carve it out and do it without guilt. You need a listening ear, one that won't take off when you are honest with them. For that, you might need to hire a counselor. Seriously, friends and family don't want to hear it all, even if they say they do.
Over my husband's objections, I started attending a local church. (My husband had been a preacher for thirty-plus years, I'll just say he was not qualified for the role.) Just those two hours on Sunday morning, being with others and listening to good preaching was very helpful to me.
My husband began to be incontinent with #2. After the first episode, I should have begun thinking about placement. BM is not something I have ever been able to handle (even as a mom changing diapers) and to have him yelling at me because I was gagging was just wrong for me to tolerate. After the third episode, my other son approached me about moving his father to Memory Care. Within a month, heart failure causing his kidneys to shut down ended his life, so I never had to go through with a move.
Looking back, I wish I had looked into placement after the first BM episode and had a plan in place. While it is difficult to think about, reality is that you just might have to do that. We don't get "hero awards" for sticking it out to the very end or doing it alone. Some of us have the grace to do that. I was not one. We tried hospice care at home and he was so hostile and uncooperative that it was was relief to me to send him to a hospice house.
You cope by not going through this journey alone, by being honest when you need help. This forum can be a great source of help, information, direciton, and sometimes, just sime straight up "you need to hear this" talk.
You cope by not allowing yourself to be verbally, emotionally, spiritually, psychologically, or physicallyt abused. You learn the art of walking away.
You cope by having a plan in place for the future (and be sure your family knows the plan as well).
You cope by choosing to not feel guilty because none of this is your fault. Realize that even now, you are probably starting the grief journey as you watch your husband become a different man than you used to know.
Wishing you all the best.
At least he's not driving, one worry to check off your list.
Irritability/depression...most all have it, aging and poor health is no picnic.
COPD and Afib? In the Top Ten of serious conditions. Your husband may need more care than you can provide by yourself.
You have the main responsibility of everything dumped on you now. Finances, bills, shopping, cooking, house cleaning, laundry, driving, doctor visits and worrying about everything for the two of you. Did I have it right? You are going to eventually need HELP.
I would assume neither of you work and are both retired? Live alone, without kids or relatives? You can call your County for possible programs and help available. You can get your groceries and medications delivered. Any way to save time is a priority.
You should get a binder or pocket file for all the stuff you need to keep organized and tracked. Your bills, banking, his doctors names and numbers, with all the Log Ins/passwords for the medical portals. Keep it all in one place.
Most of all, try to take care of yourself. Get enough sleep, eat decent, get help with housekeeping, and try to stay calm. If you fall apart, everything else does. Hopefully you have friends or family in your area for moral support.
At least you found the right place. Lots of good advice will come. You are stronger than you think, so learn what you can and find the right help. Taking him to Adult Daycare a few days a week will take the pressure off.
Wishing you strength to get through this!
My hope is that possible support system people all over the world will read your post and decide, "Wow! I could help someone! Maybe I should drop by my neighbor's and offer to sweep out their garage! Or take them half of the spaghetti I made today!" (Instead of saying they'll be glad to help and not knowing how, so they never do.) Even the little things count when it comes to helping caregivers.
Role reversal began several years before his fall. I became the rock that he was tethered to for stability.
When I realized he was never going to get out of bed and walk again, the adjustment was hard.
I do have daily help that does bed baths, diaper changes, feeds him, and is another person for him to talk to and joke with, when he feels like it.
Hospice Nurse comes once weekly since he's had some medical complications.
I will care for him at home, with help, as long as it's safe for both of us to do such.
I learned to accept and even ask for help, instead of wearing myself down. I realized that if I break down, I'm no good to my husband.
I set up a trust, in case I die before him. I gave instructions for family to call APS and have that agency be his guardian in event of my death. He can be placed in SNF at that time. No niece or nephew will want to take care of a bedbound uncle in his 70s. The appointed family member trustee will pay the bills for his care, thru the trust.
I also prepaid burial expenses for us. We have no children, so my focus was having a plan for help now, and the future. It took me 18 months from his becoming bed-bound to fully accept and act on the fact that I needed a plan in case I die first.
A lot of posters on this site will explain the importance of self care, so we don't become the ones who die before the spouse we are caring for. It's absolutely true.
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