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I have been taking care of my 92-year-old husband solo for 9 months although it seems like much longer. I am 74 and came off 3 years of treatment for ovarian cancer and lymphoma in April. He cannot use his legs, so is wheelchair bound and depends on me to get on and off the toilet, for help getting washed and dressed, and many times asks me to wheel him from one room to another. His mind is mostly OK although I suspect there is some decline. He also has stage 4 congestive heart failure. I am so tired of this. We have talked to hospice, and he qualifies for their help. I don't know that I am asking a question here, more like blowing off steam, but I feel exhausted, resentful, and put upon. I can't remember the last time I felt happy. I guess I just wanted to sound off.

This is too much of a burden for you to bear. Find help for your husband from where ever you can and start taking care of yourself. Good luck
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Reply to Isabelsdaughter
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Thanks for sharing your feelings!
I so understand!
I have been taking care of my husband (much younger) for 9 years! As I am aging - we are both 62 - I find my body giving out and the physical work of getting him in and out of bed is becoming too hard! I know I should be stronger, but 9 years of this has taken a toll on me.

I hope you get hospice care - which can come in many forms. He can stay at home and have caregivers come to help with care needs.

I'm wondering if you have talked with him about using an incontinence product instead of helping him on and off the toilet. Or a bedpan, or some other solution.

You really should not be lifting his weight on your own! Please try to get help!
It will ease some of your frustration!
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That sounds dreadful. If the situation were the other way around, I seriously doubt you would want or expect him to care for you 24/7. I certainly would not want my husband or adult child to do it for me.

You need, you deserve, you must find a way to have a reasonable amount of time to yourself and to be able to enjoy your own life on your own terms. No guilt. Many have given good suggestions on how. Good luck!!!! You can do it!
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Since 2019 my husband has been having one health crisis after another, beginning at 62 years old. We're 6 months apart he and I. Who says you have to be very old to get very sick? In the midst of all this, we had my very old mother w dementia living in Memory Care Assisted Living to contend with, and her very mean streak a mile wide which caused me a lot of stress heaped on the pile. Mom died 1 month before we had to go to AZ so dh could have a liver transplant, non alcohol related.

Just when things were starting to calm down, I was diagnosed with stage 4 cancer, out of the blue, from a pain I was seen for in the ER. Then I started immunotherapy and had a very, very bad reaction to it. It put my cancer into remission but left me with a big disability causing dh to be MY caregiver now for the past 19+ months.

To say we're tired and have medical fatigue is a gross understatement. I feel your pain, my friend. I hope the cancer never comes back, but if it does, you'll have chemo and get dh into a SNF with hospice. Period. I hope you will consider your life as important as his, and recognize when YOU need medical attention and step back from your caregiver role. Just as I expect my dh to step back from his caregiver role if he needs medical attention. I hope you get dh on hospice now. Take the extra layer of support. If my cancer comes back and can't be treated with surgery, I'll call hospice for myself since I cannot take immunotherapy again.

We have to put those "what if's" out of our minds and do what we can to enjoy the moments in life, appreciate the beauty of the small things. Take it day by day because that's all ANY of us has anyway, in reality. I wish you good health and your husband no pain and suffering during the rest of his journey. God bless you both as you love one another through these moments.
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FixItPhyl Sep 25, 2024
Your sharing this has truly given me the courage to start considering my life as important ... and step back from the pace of caregiver role I've been on for so long (stop trying to FixIT because IT never seems to end). Oh, and by the way...my mother has that same mean streak, w/o dementia!

God bless you as well.
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Long illnesses are hard for everyone. He doesn't want to be sick and im sure he just wants to be home, comfortable. Trust me, he much rather take you to dinner or dancing. No phases of getting old is fun. When we heard it, we were young and like "yea yea" but when it IS US. Its like "HOLY CRAP! IM OLD?" WHY AREN'T PEOPLE SCREAMING AND SHAKING US, SAYING "U DONT UNDERSTAND! UR GETTING OLD RIGHT NOW! AS WE SPEAK" but thats because they remember being on the other end.. that would be when granny lost her mind and started screaming. Lol. Of course ur not happy. U and your husband are sick and going through it. Ur not supposed be happy and feel good all ur life. Idk why people make u think u should. U know, i think that's people putting on smiles for the facade, as you would too, say out shopping, if u were nice to the clerk, smiled and laughing, people might think "thats a happy lady" but u never said that..u were acting appropriately to that situation..not because life is good but because you want to give someone something good in their day, u dont want to burden them or worry anyone. U want everyone else to be happy. I think a lot of us do that, especially women, when we wouldn't say life is anything special. We are just getting through a moment at a time. All u can do is change your idea of things that give u joy in this stage of life because ur life is different now. You cant do the same things u used too so use the things you do have now the same way you adapted to this life in other ways, do the same with this..i think now is the time you do something u always wanted too..i started making jewelry, selling it online where i learned all that sales and photography. Im learning Spanish and how to play guitar. All online. We have unlimited access with the Internet. U never have to leave ur house. Even usps comes to get my sales that i pay for shipping online. Get into something. Its time to honor the life u and ur husband made in ur last stages of it . good luck
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cjwhite Sep 24, 2024
I agree. Any relief is going to come in changing your perspective and adding in small things that bring you joy. And giving yourself grace for having feelings.
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So hope that you are now cancer-free. What a horrible thing for you to go through. May you never again know cancer or any of the pain or treatments associated with this horrendous disease.

You have been through so much with this disease. Hopefully support will come to help you with your husband, so you can rest in and relish your recovery.
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Dillsburglady 19 hours ago
Just got my 3 year ovarian cancer checkup and all is well.
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Dillsburglady: Prayers sent.
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Dillsburglady 19 hours ago
Thanks!!
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I completely understand. It is an uncomfortable paradox to love someone and want to care for them, while at the very same time feel resentful of what it is costing us. I love my mom with all my heart and know it is the right thing to do to take care of her. And, I am so tired of my life being consumed - the responsibility can be crushing - like having a second full time job. And I am grateful for her, and grateful she is still alive and grateful she has been an amazing mom, and I also feel so tired.
Hang in there. I am hoping you get some relief.
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Marcia22 Sep 26, 2024
I'm the same way with my Dad. He has been at our house since after Thanksgiving!! I have done 99.75% of the care, cleaning and everything else for my Dad and clean his bedroom on a daily basis! I'm so done being overwhelmed! My husband and I are having issues! Soon but not soon enough, my dad will be moving to memory care. Hopefully, he will be moving on Sept 30th or Oct 1st. I love you Dad but you are driving me crazy! I took a break last night after my dad went to bed and from going insane earlier! I hunkered down in our bedroom and just chilled! It was great!
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He is 18 years older than you. With that age gap you had to know he’d need looking after while you were still able to go and do normally. Did you anticipate this when you married him?

I don’t mean to sound rude. I don’t doubt you love him. It just seems so common on here (and society in general) that a woman marries a much older man, they feel blindsided when their husband ages and can no longer be the established, stable, virile man he was. Or the wife sees it coming, but didn’t think she’d be the caregiver and no longer the wife. I’ve seen
some younger wives complain that their husbands no longer want to travel or do much of anything. Well yeah, they’re 18+ years older!
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IneedPeace Sep 25, 2024
You don't pick who you fall in love with. Or who you think you need to escape other extremely unpleasant circumstances. Personal experience here - paid for the wrong choice for 40 years.
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Does he have some money? The agencies in my area charge $30 per hour for a 3 hour minimum.
Getting someone out in the morning would give you a break.

You can also self refer to hospice in my area. Call them and an RN will come out to evaluate. When Mom was in home hospice she got an RN coming out to the house once a week. We did not use the CNA service as we had some private pay caregivers. Normally hospice will send a CNA out twice a week to bathe.
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I feel your frustration! God Bless!
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Congratulations! You have taken the first step to dealing with your situation. That first step is acknowledging that you are burned out. We are conditioned to believe that we must, can do whatever needs to be done. Sometimes that simply is not possible. Don't stop with blowing off steam in this forum. This is a great place to do that, and it can help a lot, but look into what your next steps need to be. You need to be honest with yourself, your husband, and family.

Only you can decide what you will do next, but you obviously cannot continue this pace. I am also 74 and doing a lot. I know it is difficult at our age to admit that we cannot do what we could have done 20 or 30 years ago. However, your own health is very much on the line. You need to take some time to consider what you can do to free up some time for yourself to simply be you and do what you need and want. You cannot enslave yourself to your husband's needs. Something needs to give other than you. Check with senior services and see what can be done to get some help. Maybe you can get someone to come in daily and help your husband to clean up and get dressed. Perhaps you can deal with the rest of the day better if you can have a few hours in the morning for yourself. Maybe afternoon or evening help would work better for you. Find what will work for you.
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I work an extra job to pay for more sitters. I would rather be at work than taking care of my person. I still do nights and weekends with her, and that's enough. You should think about doing the same. I make enough hourly to exactly cover the sitters, and I get more retirement as a result as well.
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You have every right to sound off. You must be exhausted Your health conditions would have also taken their toil. I think you need to explore options for care help. Speak to your doctor/legal. A 74 year old recovering from health issues should not be doing this heavy work. If the hospice says he qualifies for help then ask them how you arrange it and what your options are. 9 months is a long time copying on your own. Well done you super hero - now take some time and look after yourself as well. best wishes.
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Dillsburglady 19 hours ago
Thank you for your kind words. I appreciate it very much.
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Sad state of affairs for us caretakers. My husband needs 24/7 care and it's me! I signed him up for hospice and an aide showers him 2x/week. I also bring him to daycare 3x/week. I have a sitter who's willing to stay a few days while I visit family and/or just get away. I've tried respite and toured group homes,,all were horrible. I don't have $5000/month for group homes or $9000/month for snf and I refuse to pull from our paid in full home. To make it worse. The facilities give horrendous care and as a retired nurse I know what I'm saying. It's a crime how most are abused by neglect. So far this plan works for me but I'm still looking forward to me time someday🙏
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westernKentucky Sep 24, 2024
You must live in a southern state. Seriously, they are the worst about elder care. I am in Kentucky, and the rural areas are horrible about having nice homes for our elderly.
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I certainly understand the unhappiness of caregiving. Please, do not lift a grown man. I learned the hard way and have surgery looming to repair injuries from lifting. I flat refuse now. You deserve better. Perhaps it’s time to explore placement.
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You have been through so much. We are your helpers? Not sure why your husband isn't in Hospice care while in a personal care home or skilled nursing. Not sure if you both have Medicaid or Medicare, but they cover skilled nursing after hospital stays. Your family? Friends? Please reach out to them.
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wantmylife Sep 24, 2024
Only Medicaid pays for SNF in full. Medicare pays for 100 days after a hospital stay, but only the first 20 in full, then there's a copay.
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Sign up for Hospice! I was at the point you are at now - they are a huge help and really make my life better…depending of the hospice company you are with they may have people that can just sit with him for you to get a break. Like you I don’t have any backup help to speak of so it is a 24/7 job. Good luck!
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Dillsburglady 20 hours ago
Just did that yesterday. Ordered pain meds, and said a nurse will come once a week. They offer NO support services for the caregiver that I can see. Will send someone twice a week to bathe him, but he doesn't want that. I asked about support groups for me and I got just a blank stare - they don't do that. What huge help are you talking about?
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Good Morning,

You need help with Custodial Care...I would bring in services. The Primary Care Doctor can write orders through your insurance for CNA, Physical Therapy, etc.

Just do it...don't ask permission, it's a necessity. You can request a male if you think that would help.
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Dillsburglady 20 hours ago
Have had PT for months. They just discharged him because he is getting worse not better.
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I feel for you. Although I am fairly healthy, am quite done with this myself. Bern at it over a year. Mom lives in her own home, I do food, bills, laundry, cleaning. Make her toilet and dress herself (she is more than capable). However she refuses to eat or drink properly, or even exercise her weak leg 5 minutes a day. At this point I really don’t care for the person she has become
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Dianne4016 Sep 24, 2024
My mother lives in a rental house. I do her bills, grocery ordering, medications, yard work, cleaning, and dr appointments. She rarely gets dressed unless she is going to a doctor’s appointment. She is bossy, complains constantly, and is generally disrespectful to me and my DH. I’ve been doing this almost 6 years. She also refuses to eat anything but bread and sweets unless I bring her hot food from my house or a restaurant. It’s exhausting emotionally!
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You cannot do this alone. You need help and that's ok.
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Dill, my husband and I both have talked about using VSEAD in the event we become a burden in life.

The loss of my dear husband is unthinkable but, there are worse things than dying and we are in agreement with what those are. If your husband makes this decision, I would encourage you to bring hospice on board to make it as easy as possible.

I pray that you both have peace for whatever tomorrow holds for you.
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LakeErie Sep 24, 2024
What is VSEAD?
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I’m in the same boat as you and have been doing it for 7 years.

He has Hospice now but they only come two ore times a week to bathe him and a nurse once a week to check on him. I have bit the bullet and have hired someone to come in for two hrs a day.

Hospice has been mostly a support system which I appreciate having someone in our corner. If you have a problem they will try and help but if you need more than that, you need to hire someone to come in.

i fight depression everyday but the support hospice gives has made it tolerable.

Good luck.
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Dill, I just wanted to tell you how sorry I am you are going through this, and don't forget to take care of yourself.

I'm sure this is unbearably hard.

Vent anytime you need to. 🙏😔
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Dillsburglady Sep 22, 2024
Thanks for that. I may take you up on it.
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It sounds as though sounding off is leading perhaps to some difficult decisions, and I agree that they are very difficult. I would call all family and friends around you for support now. I would see an attorney about division of assets in order to keep funds safe for yourself and your future. And I would begin to think about the sustainability of all this. It may not be sustainable for any number of reasons.
I sure and sorry and I sure do wish you the very best ongoing.
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I'm glad you recognize that you are in burnout (and not at all happy that you are in it!)

The caregiving arrangement must accommodate the caregiver, just for this reason: to prevent burnout. If you degrade mentally, emotionally and physically then who will be the caregiver? You are the priority. Anything you choose to do that helps you is acceptable -- whether your husband wants it or not.

First, does he have a PoA? If so, is it you? Or someone else? The PoA must read the document to find out what activates the authority. It is usually 1 medical diagnosis of cognitive/memory impairment that necessitates the help of the PoA. Get this diagnosis on clinic letterhead and signed by your husband's primary physician. The PoA will need this to manage his affairs, especially financial ones. My Mom's annuity manage company made me jump through all sorts of hoops in order to be able to access her funds. You (or the PoA) do not want to do this in a crisis.

If your husband doesn't have a PoA then he sounds like he is still able to make this happen. Legally the bar is low for "capacity" to do this so don't make any assumptions. The elder law attorney will interview him for capacity and decide.

Why am I harping on the PoA issue? Because it is where a lot of care decisions, actions and possible solutions get stalled. Especially if your husband becomes resistant to a solution that is in both of your best interests. An activated PoA can make it happen.

Maybe start by hiring a companion aid for him a few hours a day, every day. If he balks, you tell him the aids are for you. Hire out services that you are currently doing, like housecleaning, yard work, etc. If your husband is in decline he is losing his ability to use logic and reason, and his empathy also will disappear -- as these are all parts of dementia. He will start to not see or care that you are burning out due to his needs. Therefore you are your own best advocate.

If money is tight, consider contacting your local Area Agency on Aging for information and help. Or, contact social services for your county to see if your husband qualifies for any in-home assistance, like light housekeeping, food prep, hygiene, transportation, etc.

If your husband doesn't have a PoA and refuses to create one, inform him that your hands will be tied and the county will eventually have a court-assigned legal guardian take over all his care and decisions, including what facility he goes into and when.

There is always an alternate solution. You just have to be willing to accept it.

I wish you success in reducing your load and peace in your heart on this journey.
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Dillsburglady Sep 22, 2024
Thanks for your help. Yes he has a POA and put it in a "safe place" along with my POA, Advanced Directive and Will. Now he can't find any of them. Luckily we have a joint checking account that I use to pay bills.
I am concerned that if my cancer reoccurs I won't be able to do chemo and also care for him. He has a son who is in Florida. He moved there when all of this started. Can't depend on him for much,
Husband has talked about stopping eating and drinking but wants to wait and see who wins the election first. Is this crazy or what?
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I'm 68yrs and taking care of my 96yr old dad who has Lewy Body Dementia - so trust me - I know how you feel. My Sons took turns away from our family business last year to care for Dad for 8 months because my husband became ill after we had C19 and after 8 months and complete three organs failing my Hubby passed in March of 23 - I immediately had to return to care for Dad and have been here 24/7 since. I guess I just vented as well - so thank you for venting - I needed that too. You definitely need help - you're still in the healing process and this is way too much for you at this point - My Best Wishes to You! Take care - Remember to breathe! Oh & I'm back to crocheting to relax when I have a moment to myself (when he's sleeping during the day) He's up off & on at night - so am I :\ Take care.
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Dillsburglady Sep 22, 2024
I've been knitting hats for chemo patients in my "spare" time. It is relaxing and I get to be creative. They are much appreciated. I'm up to about 50 so far and am beginning my net batch of winter hats. Keeps me sane (at least I think I'm still sane).
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I hope you get some help soon! That does sound terrible for you and it is quite alright to vent sometimes. In proper society people do not want to hear these things but it is ok here. Hang in there.

As I write this I just watched my father lock me out of the house. Not on purpose He has dementia and doesn't do a thing for himself but loves to turn off lights and lock doors. It's ok, though, because I was smart enough to bring my keys with me so I can just walk around the house and come in the front door...
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Mamacrow Sep 19, 2024
My Dad lock me out on purpose - stands on the other side of the sliding glass door and acts like he doesn't know how to unlock it! uuggghhh I carry keys as well. The struggle is real!
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