Are you sure you want to exit? Your progress will be lost.
Who are you caring for?
Which best describes their mobility?
How well are they maintaining their hygiene?
How are they managing their medications?
Does their living environment pose any safety concerns?
Fall risks, spoiled food, or other threats to wellbeing
Are they experiencing any memory loss?
Which best describes your loved one's social life?
Acknowledgment of Disclosures and Authorization
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington. Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services. 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.
II. How We Are Paid. We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour. 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.
IV. No Obligation or Commitment. You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints. Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights. APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.I agree that: A.I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information"). B.APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink. C.APFM may send all communications to me electronically via e-mail or by access to an APFM web site. D.If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records. E.This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year. F.You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
✔
I acknowledge and authorize
✔
I consent to the collection of my consumer health data.*
✔
I consent to the sharing of my consumer health data with qualified home care agencies.*
*If I am consenting on behalf of someone else, I have the proper authorization to do so. By clicking Get My Results, you agree to our Privacy Policy. You also consent to receive calls and texts, which may be autodialed, from us and our customer communities. Your consent is not a condition to using our service. Please visit our Terms of Use. for information about our privacy practices.
Mostly Independent
Your loved one may not require home care or assisted living services at this time. However, continue to monitor their condition for changes and consider occasional in-home care services for help as needed.
Remember, this assessment is not a substitute for professional advice.
Share a few details and we will match you to trusted home care in your area:
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.
You are not alone. My husband is two years younger than me. We knew we would be dealing with this eventually. Dementia is hard, because he can't understand what is happening to him and might not even be fully aware. If he is, it can scare him too much to be able to communicate in meaningful ways. Do what is best for BOTH of you, which might not be what either of you wants. Just remember that there are a lot of us out here coping who will support you.
I cared for my wife for 18 years at home. She suffered from FTD. I was 65 years old when it started and I learned fast that I could not do it alone. I needed help.
Help from family and friends is not always forthcoming and will not usually be enough. As the disease progresses, you have to think of hiring aides either through agencies or directly. It is not an easy task and may involve some trial and error.
You took the correct step by joining this group. Investigate other groups which specialize in the kind of ailments your husband is suffering from and do not hesitate to ask questions.
If you like, my book "Dementia Care Companion" has a wealth of information about the disease at it progresses and has advice and suggestions for dealing with the problems a caregiver faces from beginning to the end.
My wife recently passed after 48 years together , I'm 75 , she was 79. She had severe arthritis and pain from her hips to her toes, & her neck, chin was against her chest couldn't straighten out. She also had congestive heart failure, and sundowners, and severe anxiety. You have a tough job, women in general are more sensitive, caring and need more support. My wife went from pallative care, right to hospice, which was a blessing, in a sense, and a curse. The curse being all of her ailments would no longer be looked at or corrected. She was on a slow decline, from now on she would be made comfortable. If any of your husbands illness can't be corrected I would consider Hospice, that's the Blessing, because you would have a RN ,and a CNA come in once a week. I don't envy you , I did a hard 3 years , but the last 10 months were torture. Hospice will give help, and help you cope , Lot's of people here in the Aging Care forum will give plenty of support & advice, God Bless You
It’s tough, caregiver for my wife. I have agency caregivers as much as I can afford. My kids help out some also. Don’t feel bad asking for help. At 88 I am reasonably able bodied, so I can manage the rest of the time. Probably would consider nursing home if I can no longer manage i
My BIL just placed his wife with FTD in an ALF this week. He has been trying to care for her on his own and it proved to practically kill him.
As he was pursuing looking at places for her, he had a fall & blackout at the gym. He spent 3 days in the hospital and a shocking dx of cancer came out of all the tests.
So this pushed everything into hyperdrive. I 'babysat' his wife as he searched for the right place for her. I don't know her well, and it was really, really hard to have her in my home for 3 days & nights.
Saw BIL today and SIL in facility. She is fine and his burden has been lifted. He's lucky that she has dementia, but she's happy and actually, a lot nicer to be around.
I know he felt such guilt, but right now he has to take care of himself.
Gratefully, one of her siblings came out to help move her. We all helped out and made it easier for BIL. I know he'll have some measure of guilt, but he is facing chemo and all that fun (he has the same cancer that I had)...and she's in a place that can keep her safe and sound.
You get help as you need it / caregivers and volunteers, and support from friends.
This is a very difficult time for you 'too' - you need down time / respites. We all know this.
If you cannot afford caregivers, try contacting your / a local church asking for volunteer help.
Have you considered whether it is time for assisted living / memory care facility? You might want to at least call to talk with them and visit a couple just in case.
Check and see if your insurance or gov't assistance can help with costs although they do not pay for caregivers (except spouses). You might be able to get some payment directly. Check this out:
Get paid as a caregiver for a family member
Become a paid caregiver through a state Medicaid program If someone with a disability already receives Medicaid, their state may allow a family member or friend to become a paid caregiver. Long-term care insurance Veterans programs
You become the best caretaker you are able to be. When and where you need outside help, add that to the "program." Whether your husband expresses it or not, he will know and appreciate that you are taking good care of him. Be proud and grateful that you are able to do that.
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."
Danielle, I am so sorry you are going through this. If you are still working, could you afford some help to give you a break? Medication was able to resolve depression and irritability with my husband; the cognitive issues of course are still there. He cannot drive, but occasionally becomes aggressive about wanting to do so (I tell him we lost the keys). He was a good father and partner, but he was never the family provider and was fairly useless around the house, so transition for me was easy. The hardest part was to retire to take care of him. I would strongly recommend that your husband sign a POA, if you can convince him (my husband won't). Make sure you have a POA for yourself too. In NM there are forms online and you just need a notary certification. If you can, consult an elder law attorney to organize your finances and prepare for your future. Also, try to keep a social network, if only by email and online classes. Exercise classes on AARP help me keep my sanity. Sometimes my husband joins in his own way. Pay attention to your health (physical and mental) and don't skip checkouts (you can take your husband along if needed). I had to start taking antidepressants as my doctor recommended them, they helped. Try to find some activities you enjoy and you can do while being a caregiver - I knit, exercise, try new recipes, and have a garden. Not the same as travelling, but better than nothing. Try also to find something you and your husband can do together and enjoy. We walk outdoors or at the mall (according to his daily mood and energy). I try to involve him in the daily activities (he can sweep the floor a bit and helps carrying some groceries) so he feels useful. Above all, don't give up on yourself. This is a challenge, and you will survive and learn from it. Take all the help the community can offer. Best of luck and a big hug to you.
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.
My husband of 56 years has Parkinson's. We have been able to have home health aides in the morning to bathe and dress him, and after breakfast, which I make, to exercise him. An aide comes after dinner to do the reverse. These aides also toilet him and change his pull ups. Until very recently, I had the afternoon and evening hours with him, but we added some afternoon hours to continue exercising. It is important to get skilled aides and not just someone to baby sit. I also make sure I get my own time, not just to get errands done, but to keep my own energy up and brain cells working. So I swim and do yoga, keep up with friends, read with at least two book clubs (meeting on Zoom), and have my own therapist. It's a big job. Get help, and take care of yourself,
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.
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.
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! 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.
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.
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.
Role reversal is not easy. You have to go into survival mode and go with the flow. You cannot let things get to overwhelming. Do your best, but reach out for health if your husband's health starts to decline too rapidly. Look into alternative care.
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!
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.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
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.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
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.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Help from family and friends is not always forthcoming and will not usually be enough. As the disease progresses, you have to think of hiring aides either through agencies or directly. It is not an easy task and may involve some trial and error.
You took the correct step by joining this group. Investigate other groups which specialize in the kind of ailments your husband is suffering from and do not hesitate to ask questions.
If you like, my book "Dementia Care Companion" has a wealth of information about the disease at it progresses and has advice and suggestions for dealing with the problems a caregiver faces from beginning to the end.
You have a tough job, women in general are more sensitive, caring and need more support. My wife went from pallative care, right to hospice, which was a blessing, in a sense, and a curse. The curse being all of her ailments would no longer be looked at or corrected. She was on a slow decline, from now on she would be made comfortable. If any of your husbands illness can't be corrected I would consider Hospice, that's the Blessing, because you would have a RN ,and a CNA come in once a week. I don't envy you , I did a hard 3 years , but the last 10 months were torture. Hospice will give help, and help you cope , Lot's of people here in the Aging Care forum will give plenty of support & advice, God Bless You
My BIL just placed his wife with FTD in an ALF this week. He has been trying to care for her on his own and it proved to practically kill him.
As he was pursuing looking at places for her, he had a fall & blackout at the gym. He spent 3 days in the hospital and a shocking dx of cancer came out of all the tests.
So this pushed everything into hyperdrive. I 'babysat' his wife as he searched for the right place for her. I don't know her well, and it was really, really hard to have her in my home for 3 days & nights.
Saw BIL today and SIL in facility. She is fine and his burden has been lifted. He's lucky that she has dementia, but she's happy and actually, a lot nicer to be around.
I know he felt such guilt, but right now he has to take care of himself.
Gratefully, one of her siblings came out to help move her. We all helped out and made it easier for BIL. I know he'll have some measure of guilt, but he is facing chemo and all that fun (he has the same cancer that I had)...and she's in a place that can keep her safe and sound.
This is a very difficult time for you 'too' - you need down time / respites. We all know this.
If you cannot afford caregivers, try contacting your / a local church asking for volunteer help.
Have you considered whether it is time for assisted living / memory care facility? You might want to at least call to talk with them and visit a couple just in case.
Check and see if your insurance or gov't assistance can help with costs although they do not pay for caregivers (except spouses). You might be able to get some payment directly. Check this out:
Get paid as a caregiver for a family member
Become a paid caregiver through a state Medicaid program If someone with a disability already receives Medicaid, their state may allow a family member or friend to become a paid caregiver.
Long-term care insurance
Veterans programs
Gena / Touch Matters
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.
Medication was able to resolve depression and irritability with my husband; the cognitive issues of course are still there. He cannot drive, but occasionally becomes aggressive about wanting to do so (I tell him we lost the keys). He was a good father and partner, but he was never the family provider and was fairly useless around the house, so transition for me was easy. The hardest part was to retire to take care of him.
I would strongly recommend that your husband sign a POA, if you can convince him (my husband won't). Make sure you have a POA for yourself too. In NM there are forms online and you just need a notary certification.
If you can, consult an elder law attorney to organize your finances and prepare for your future. Also, try to keep a social network, if only by email and online classes. Exercise classes on AARP help me keep my sanity. Sometimes my husband joins in his own way.
Pay attention to your health (physical and mental) and don't skip checkouts (you can take your husband along if needed). I had to start taking antidepressants as my doctor recommended them, they helped.
Try to find some activities you enjoy and you can do while being a caregiver - I knit, exercise, try new recipes, and have a garden. Not the same as travelling, but better than nothing.
Try also to find something you and your husband can do together and enjoy. We walk outdoors or at the mall (according to his daily mood and energy). I try to involve him in the daily activities (he can sweep the floor a bit and helps carrying some groceries) so he feels useful.
Above all, don't give up on yourself. This is a challenge, and you will survive and learn from it. Take all the help the community can offer.
Best of luck and a big hug to you.
It is important to get skilled aides and not just someone to baby sit.
I also make sure I get my own time, not just to get errands done, but to keep my own energy up and brain cells working. So I swim and do yoga, keep up with friends, read with at least two book clubs (meeting on Zoom), and have my own therapist.
It's a big job. Get help, and take care of yourself,
"It's a damn hard road" about sums it up. My spouse is 14 years older than me.
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.
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.
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.
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.
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!
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.
Please back into your post and use punctuation and your space bar.
You have a few minutes where you can edit.