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I am caring for my husband, cognitive decline and stage 4 lung cancer. We are both in our mid 70s. Anybody out there caring for a spouse? I wonder if the issues are the same or somehow fundamentally different when caring for a spouse. I am beginning to worry about things like not having the strength to help him up when he falls, any suggestions? Thanks.

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I really recommend arranging a home health care nurse, if funds allow. For your safety and his. If not contact medicare/Medicaid.

To answer your question, yes, the care is basically the same no matter who is afflicted.

Remember your strength and self care—you caring for him yourself can be a tall order.

Blessings
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Reply to TheirWorld
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harveysgal: Imho, absolutely do NOT try to lift your spouse as you will risk injury to your person. Your spouse should get a mobility assist device, aka, cane, et al.
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Reply to Llamalover47
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Hello, I am Jazzy. I am also a caregiver, specializing in seniors with Alzheimer's. It's not an easy profession, but very rewarding. Been at this for almost 50 years. I was also my hubby's caregiver, and I wouldn't trade those memories for all the gold in the world. I commend you for being your husband's caregiver. Treasure this time, 'cause they will bring you comfort when his life journey is done. About his falling - please don't try picking him up - if he should get injured, that will make it worse. I've found that if you call your local fire department, explain your situation, and ask if they will come get him up for you, they will be more than happy to help. They will also check him out - that's peace of mind for you. Know that you will need to take care of YOU also. When a chance to take a break shows up, take it, and do not feel guilty about it. Guilt and regret are a total waste of time, and they will mess with your mind. I wish you the best in all you do, and that you find comfort, peace, in your mind and soul. Treasure this time you have, cause time goes by quickly. Know too, that you and yours are in my prayers. Talk to GOD, and he will bring you comfort. Take care, Jazzy.
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TheirWorld Dec 1, 2021
Spot on! Where would we be without you and those like you who help us do our best too!? Thank you 🙏🏼
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My husband is 88, 14 years older than me. He’s been in vascular dementia for two years. I’m his full time caregiver (although I am building a support network of friends and helpers). When we were in Florida for the winter I was given the phone number of a wonderful group of volunteers—mostly retired police and fire fighters—who are available at any hour to help with falls. In our present location the police have a phone number and will send officers to help with falls. These numbers are rarely publicized so make inquiries of friends and people who work for your town since you may have resources you don’t even know about. My husband has lost weight and height and is lighter than he used to be but when he falls his confusion level escalates and he can’t follow simple instructions like to get on his knees or to shift his weight. The only solution is a lift and recovery time.

And, yes, caring for a spouse is different from a parent in significant ways. Hopefully the shared link is love and a determination to care for and protect your loved one.
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Reply to Carelyn73
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I cared for my husband (brain tumor) and father (dementia) so that was also a concern for me. They were both very prone to falls. Luckily until close to the end when my husband was bedridden I was usually able to get him up. I did have to call the fire department one night to get him back in bed for me when he woke and forgot he couldn’t walk anymore. With my dad I was lucky that my son only lived a few blocks from me and helped me get him back up a few times. He finally reached a point where he was bedridden also. An occupational or physical therapist may be able to help advise you on things like that. It’s good to prepare for it ahead of time so you know what to do when it happens.
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Reply to Dizzerth
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Do not try to get up husband from fall as you could injure yourself.

Do a fall assessment for any hazards. I think Medicare will send someone to your home to look for hazards.

Talk to your husband about using a cane or other assistance device. A fall could be catastrophic for you both.
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Reply to BrendaJayi
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I have had the experience of caring for my DH 4 or 5 times when he has had major health issues. He's a terrible, terrible patient (that word needs to be changed--maybe to 'tyrant' :) and he believes this is my JOB, yet when the tables have been turned to where I need help, he calls my daughters. I will not accept even PT care from them, they have young families and careers and lives. DH is capable, he is simply unwilling and totally befuddled as to how to run a simple home.

While I treated for cancer, 2 years ago--ending just 9 months ago--he did nothing to help. Planned as many business trips as he could and was actually gone for 3 weeks at one juncture and did not call nor text one single time to see how I was. He just could NOT deal. I thought he wanted me to die--turns out, he was so distraught over the thought of my dying, he could barely function.

BUT--he expects 3 meals a day served to him in bed when he's sick. If he's in the hospital, he expects that I spend the entire day with him and sleep there if the hospital would let me. And I better be back up there by 7 am so I can be there for rounds. Then he'd sleep all day long.

I cared for my dad, albeit, PT, but he was just grateful for any time I could spare and always thanked me. My FIL was the same. (Actually, caring for both dads was a year long effort--I was running to one or the other home every day).

Dh and I are in the process of retirement-home shopping, b/c our home has 47 stairs that must be navigated everyday. I had major foot/ankle surgery repair in July and am much better, but stairs will always cause pain. DH has fought me tooth and nail over this move. I finally told him that I was then moving alone to a studio apartment and he could have the house and all the hassle.

So, long story short--caring for my DH is 100xs harder than caring for the dads. They were FAR more grateful and kind than DH is. I have to take responsibility for the fact I have created this 'tyrant' and un-creating him is not easy.
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Reply to Midkid58
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Hello, Blessings and prayers for you....my hubby 61 and I are just starting this guy wrenching path. Dx in June. He's always been a sharp man able to do 6 things at once, highly autonomous CPA and business exec for himself. The changes and limitations have been gut wrenching for him. His self esteem has plummeted. He NEVER had a moment of self doubt or depression, but now gets angry and is highly agitated when his decisions or lack of decision is questioned. Suddenly our taxes are late, there's a IRS question there's a bill unpaid... We have had so much conflict as I try unsuccessfully to reason with him. Our only fun is with our grand baby. He sleeps so much, is groggy and fuzzy . Is unfocused. Is forgetful and impulsive. Our communication problems are worse then ever. He has had two strokes, will not take any meds. Had to let go of his 35 year accounting and tax practice because it was too comolicated..And was told to cut down...
Its been incredibly difficult on us. He thinks I'm controlling and bossy. He hates my interference and resents everything I do or say.
Gods blessings to anyone having to be going down this road.
Suggestions that helped me:
Google every Alzheimer dementia site, learn everything you can.
Watch you tube videos about the brain deterioration .
Get your Durable Power of Att. Papers ( medical and financial)in place now. He was very conflicted about this but I insisted.
We have conflict over even the simplest of things because he controlled every financial decision. Any question I ask about money or planning is met with suspicion, he's slightly paranoid and angry he can't control everything any more.
I am having to relearn how to communicate, learn how to get things done that he always did, I now manage our properties, our household, maintenance, our check book, investments, etc etc etc...everything....
Just keep telling yourself this sentence over and over. His brain has a disease. He cannot help and cannot understand some times...
Other days he's sharp and articulate....then ya get back into that teeter-totter of
communication.

I'm desperately praying for God to give me wisdom, patience, and deep compassion , taking away my anger and resentment. Pray pray And pray. Also counselling helps if you can find the time.
God bless...
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Reply to Patti2021
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I’m caring for my husband with mixed dementia/ Alzheimer’s. We are both 72 and I can not lift him. I purchased a lift chair and it will arrive soon. We are waiting for Medicaid approval for a long term care facility because my health is starting to suffer and I can’t manage his care much longer. I’m doing it out of love for him. Where will he end up if I die first? We were high school sweethearts and married 52 years this month and he does not know me as his wife. He doesn’t believe this is our house . He thinks I’m a care giver and asks me when my “ shift ends”. He’s been on the floor 3 times in a week because he’s forgotten how to get in and out of bed. I can’t likft him… he’s big and eats non stop. Gained 40 pounds in 4 months. He managed after an hour to get to his knees and I put the walker close and lifted him the best I could to reach it as I held it from falling over. We were lucky he didn’t get hurt but our luck is running out. I’m exhausted and stressed. I have a caregiver 4 hours a day non thru fri but he won’t let her do any personal care so it’s all on me. I hate this disease but love my husband. Theses “ golden” years aren’t so GOLDEN. Hugs to you
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Grandma1954 Nov 30, 2021
PLEASE...if he falls again call 911 (or whatever the emergency number is in your area) and ask for a LIFT ASSIST they will dispatch paramedics that have been trained to lift someone up without hurting themselves or the person they are trying to lift.
In most cases there is no charge for this if there is no transport to the hospital.
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I’m taking care of my husband: 4 years this January, two years diagnosed with dementia! What would you like to know ? I use lift belts and slide sheets to get him up if that’s helps you
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Ariadnee Nov 30, 2021
Hi,
What are lift belts and slide sheets?
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I cared for my Husband for 12 years after the Dementia diagnosis. (cared for him long before that as we all care for our Loved Ones.)
Caring for a spouse or SO completely changes the dynamic of the relationship.
As a married couple you have been intimate for years.
As a caregiver the intimate relationship changes and it is a "new" intimacy.
You both have to deal with that change.

I suggest, if he is no longer getting treatment for the cancer that you contact Hospice he would qualify based on the cancer diagnosis.
If he still wishes treatment for the cancer he may qualify based on the cognitive decline.
With Hospice you would get the supplies and equipment that you need to help him and help him safely for both you and him.
A Sit to Stand was a great help for me. Later we switched to a Hoyer Lift. Both enabled me to safely care for my Husband.
IF he falls do NOT try to get him up yourself. Call 911 or the non emergency number and ask for a "Lift Assist" the paramedics are trained to properly, safely lift or help someone up off the floor. If he is not hurt and there is no transport to the hospital in 99.9% of the time you will not be charged for the call.
(some areas contract with EMS and in those areas you might be charged. Call or stop by the Fire department or Village Hall and ask. They also like knowing where someone that might need extra help resides. Some people have a Fire Department Lock Box set up so that they can get in in an emergency.)

I based keeping my Husband at home based on 1 thing.
If it was safe for HIM for me to care for him then he would remain at home.
If it was safe for ME to care for him then he would remain at home.
If at anytime it became unsafe for either of up I would have had no option but to place him.
I thank the help I got form Hospice and the VA that that never became a choice I had to make.
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Reply to Grandma1954
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I was a spouse caregiver. My husband had Alzheimer’s and died in March 2020. He fell several times, no injuries, but it was difficult. There are tools to help someone up, like lifting chairs by Raizer, but it was too expensive for me. If you can afford that, it is worth to think about it. Be brave, it is hard and lonely when it is over, but you have a good feeling that you did everything possible.
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Reply to Solitary
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And you have depended on them to help you with difficult things. I would guess it is very difficult and heart rending. And I am about to find out, I suspect. Bless you and him. And all of you, and us, caring for loved ones.
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Reply to Moxies
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Yes it is different with a spouse.

You grew up sort of knowing your parents would decline and you would need to watch them decline.

Your spouse? You promised to love, honor, etc ."in sickness and in health." When you can't make them better, you feel like you have failed. You want to do anything you can. The problem is, eventually you will realize there is nothing you can do. You need to take care of yourself. The most valuable resource they have is your ability to advocate for them.
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Reply to Wyoaviator
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I am doing both, husband here and dad long-distance.

I am responsible for my 68yo husband with numerous ailments, including dementia and heart failure and a seizure disorder -- fortunately, if I dare say that -- the heart failure will take him before getting to the point of needing memory care.

He's fallen several times and it is very difficult to get him up. He has to do it himself or our son (who lives in our basement) helps him up. If I need to, I will not hesitate to call the fire department for help. I hear calls like that come over the scanner frequently.

I am also bearing the brunt of responsibility for my 91yo father who is actually in excellent health but I can tell his memory is starting to go (he acknowledges it) and he was recently scammed out of thousands via Facebook (he is naive and trusting). Dad is five hours away so any visits have to include my husband (because he refuses to stay home and have someone be here with him when our son is at work, nor can I afford for anyone to come in). I now watch dad's email and Facebook page so I can catch any scams. But I really need to visit his banks and get them to convince him to give me POA now (instead of waiting until he is unable to communicate) and can't do that with my husband along for the trip.
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Rosesetta Nov 29, 2021
Yes, please find a way to get the right POA for your dad just in case anything else should happen.
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I have been living with my Dad for 10 years - it’s like being married . He has fallen and diagnosed with a small stroke . He had physical therapy for over 4 months and they worked with him falling and upper body strength. Do not hesitate to call 911 . I was able to use a chair and maneuver him back up . Another time another person helped me but it can be a scary situation . Maybe look into some physical therapy .
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Reply to KNance72
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I am a spouse caregiver. The best resource I have found for a caregiver of any type is https://leezascareconnection.org/ Due to the pandemic they offer a lot of their information and support virtually and now serve caregivers from around the world. I am blessed to be local but am mainly involved through zoom. Follow them on Facebook, they often post helpful info and provide links to other very good resources. They are non-profit but have a policy to provide their services free and not target caregivers for donations so you can be comfortable signing up for their mail list or registering for the various programs. They have a YouTube channel where the live-streaming videos are uploaded to be available anytime. They totally get the stresses of being a caregiver because Leeza Gibbons, the founder, was involved in caring for her mom who had Alzheimer’s. A lot of their volunteers are former caregivers as well. I am part of a support group for caregivers of loved ones with Parkinson’s. I also attend a drumming class and a monthly webinar about dealing with sensitive issues in dementia… all on zoom. If I could go in person they have great volunteers to spend time with my husband while I attend the support group. Check it out and I am sure you will find something that applies to whatever you are dealing with at various times. The most positive and encouraging resource I depend on to get me through various issues.
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Ariadnee Nov 30, 2021
Thanks for telling us about leezacareconnection, it is a really helpful website. Any extra tid-bit of information is so useful to me.
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You might want to get a Medical Alert to wear as a necklace or bracelet for you and your husband, where you or he presses a button and people will come to assist you. Don't strain yourself trying to pick him up. Also consider home care, having an aide come to assist you at the times when you need it most (like when he has to be bathed or dressed). Is he using a walker or other mechanical aides? Get connected with a local social worker who can advise you of your options. Medicare may cover some or all of what he needs. Also have a plan for when you call in Hospice, if he is declining. Hospice can advise and help get you the equipment you need.
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Reply to NancyIS
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I have been caring for my husband since his stroke 5 years ago. Luckily, it only hit his speech area. However, I still had to retire early since my work "wouldn't work with me" on being home when therapists were coming. The stroke did cause early onset of vascular dementia so I don't leave him alone very long. He is also a fall risk. It's hard, but right now, things are all right. Wish I could go back to work but I know as soon as I did something else would happen. If he fell, or had another stroke or heart attack, things could end up very different. I'm little, he's tall and heavier, I'd never be able to get him up. For now, we are doing this by ourselves. He is a 100% DAV and the VA has been very helpful in answering questions. If we need home health, I will ask for it.
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Rosesetta Nov 29, 2021
Have you applied for Aid & Attendance for your husband? He maybe already getting it but, unless you know about it, they don’t volunteer it.
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Caring for my husband, who has a condition where he simply drops to the floor-his legs give out and down he goes. Few weeks ago that happened 5 time in a two day period, he did not want be seen by his doctor. He was furious that I called his doctor anyway, as my husband does not take this seriously and refused to be seen. An added layer of stress to this is a recent right knee total replacement, so.....getting back up has to be done carefully. I can not lift him, he knows that.
Call 911. I have. Nice guys too.
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Reply to Ariadnee
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I was a caregiver for my husband for many years, until he passed away last Sept. My husband too when first showing signs of vascular dementia, fell a lot. After injuring myself one time trying to get him up, I started calling 911 each time he fell, and the EMT's were so very helpful and kind to come and get him up and back into bed. There is no charge for that unless they have to take him to the hospital for some reason, so please don't hesitate to call them.
And I do believe that the issues are basically the same when caring for parents or spouse, but there are also some vast differences, just because of the nature of the relationship.
Please don't hesitate to bring up any of your concerns/questions on this forum, as there are a great bunch of caregivers who if they can help in any way with their responses will.
And make sure that you're taking time just for you as well, as you matter too.
May God give you the strength and patience you will need for this journey that you're on with your husband.
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Reply to funkygrandma59
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Your husband is blessed to have you! There are a good number here caring for their spouses. The best advice I’ve seen, though it’s a challenge, is to care for yourself. You can’t be his advocate if you become ill, exhausted, and burned out. Get him used to others also helping out, whether it be family, friends, or a hired helper. And never pick him up after falls. We had many of these, the fire dept is well versed in getting a person up safely and assessing whether or not there are injuries requiring transport
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Reply to Daughterof1930
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You sure are right that the concerns are different, and in many ways. There is the fact that two spouses have lived together and are living together so there is no disruption of the living circumstances. There is usually agreement that the one will attempt care of the other. BUT there is the fact that usually both are of an age. You already recognize that a time may come when you will need help, and in that things are the same, as children cannot go on often enough just as spouses can, though for the spouse physical strength is a real concern. As your husband has cognitive decline as well as a terminal disease you cannot really discuss this with him, so much depends of what outside support you have. I think on Forum we have all. People who care for spouses, for parents, and some like myself you care for sibling, and both inhome care and care in facility.
I hope you have family or a support network. While that can be unpredictable it is at least a contact help. Wishing you the best.
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Reply to AlvaDeer
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When he falls, call the fire department. They'll come out and cheerily pick him right up again.

I had to do that when my dad was dying of cancer. A poorly-trained caregiver allowed him to get out of bed to go to the bathroom, and while we were able to get him off the toilet and into a wheelchair, we couldn't get him back into bed. I called the fire department, and they scooped him up, put him back in bed, and went on their way. It was 2 a.m., and they never even woke my mother sleeping in the next room.

Bless you and your husband. I'm sure it's a very different experience to care for a spouse, but I cannot speak to it. My husband haven't reached that point yet.
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