I don’t know how much longer I can do this!

I’m moving my husband to assisted living from the nursing home. He was in for rehab. I no longer can take care of him my mother took care of my dad and had a heart attack. I am 72 and want to have a life after taking care of him for 10 years after his stroke.

Cardell, you have done more than your share, I think you need to find proper care for him and get on with your own life, Pamela.

Cardell, I would go for LTC. You've done more than your fair share.

Of course no one wants to go to LTC. But in this instance, it certainly seems like the best and safest answer.

I feel The same way but my circumstances are different. I live with my mother who is 96 and she is in excellent health both mentally and physically. But I don’t know how much longer I can take it! We live in her home so sometimes I feel like I’m 96 and sometimes I feel like I’m 16. Depending on how she wants to treat me that day. My brothers are looking for a place for her to live, so I can go down to be with my children and grandchildren. I’m 70 and I wanna start living my life. I’ve been living with her for five years and I just can’t take it anymore. She has always preferred my brothers over me, and when I moved in here with her my dad was in a nursing home and I would’ve came back home to help her with him. But five weeks after I came back, my father passed away. She is just not nice sometimes and I know that she doesn’t like my opinion on my suggestions so II don’t give any anymore. My brothers are the only ones she listens to and I so resent that even though my brothers are very kind and helpful to me.

Thank you for the update Cardell.

If it were me, I would be having the doctors tell him he needs LTC. Then you are not the bad guy, not that that will stop him from taking it out on you, but you can go home and leave other's to deal with him.

here is an update, hubby has been in strehab for about 6 weeks. He was making great progress, but has gone backwards the past couple. PT talked to me yesterday and asked what the plan was—home or LTC. I really was thinking of bringing him home, but after reading all the past comments ( my own included) I wonder if that is wise. My main concern is getting him into the house since they aren’t sure he can do steps ( we have 3). I would like to give it a try, and if it doesnt work then LTC. I plan on talking to SW about hospice and applying for medicaid. How do you talk to your husband about placing him in LTC? the other day he was so angry, accused me of trying to put him away and getting a lawyer to make sure I didnt get any of his money. I know he would get nowhere with that, but it hurts. What to do?

As much as you’d like to do it at home, I would have to advice NOT to do it. Yes, he’s your beloved husband and is doing better in rehab. Do you know why he is doing better? It’s because he is being cared for by a professional staff.

I have no doubt that you are sincere in wanting to help him but PLEASE be honest with yourself and admit to yourself that you are not a professional.

Read your title of this post again. Your own words speak for themselves. You say that you don’t know how much longer that you can do this.

Watching someone decline is heartbreaking. I feel your pain. The truth is that all you can do is step aside and let others do the heavy lifting. You are doing your job by offering love and support.

I too cared for a person who suffers terribly with this hideous disease. Parkinson’s disease is a progressive neurological disease with no cure.

Hugs and the very best wishes for you and your dear husband. Take care.

The doctor told you that it wasn't safe for EITHER of you for him to be at home.

Hospice is NOT full time care. He needs to stay in Long Term Care for HIS safety.

An update on my husband. He was admitted into hospital 3 wks ago for cellulitis. His doctor said it wasnt safe for either of us to have him at home. I brought him home after 4 days and things went downhill fast. At his post hospital visit, his doctor said it was time for LTC. He was admitted to rehab 10 days ago. He is doing remarkably well. He still cant walk, but is doing well in pt and is thinking clearly. They are talking about hospice, but am wondering if I should do it at home or in a LTC setting. VA will pay the whole bill if he stays in LTC on hospice. Any thoughts?

I'm only 52 and feel that way right now. Someone asked if I was semi-retired because of me only being able to work 3 days a week for 8 hr/day when I'm supposed to be working 5 days 12hr/day. Yah, she needs a baby sitter but I can't afford $25/hr for a caregiver. Some of you can throw money at the issue but I can't. The issue with putting Mom in a "home" of any stype is mthat she is still Way Too combative and won't allow anyone in the house to keep her company other than myself. The day nurse that comes; paid for by her Dr is only for 4 hr/day 4 days a week just so I can Maybe get 3 hours of sleep and I have to be up to let the nurse in before I can go upstairs to sleep. Yah, I'm screwed.

His care will kill you. Probably before him.
It's time for assisted living or a nursing home (if your finances are sufficient for assisted living).
Set boundaries. Make it clear to his doctors that his multiple appointments are a significant burden. They'll reduce them. If they don't, find another doctor.

I recently took my dad to a follow up that involved medical transport, me taking a half day from work, a care aide accompanying him from the nursing home...at the appointment, a physician's assistant came in, took his blood pressure, took off his sock and felt the pulse in his foot. Appointment over. They had the nerve to want to schedule a follow up! If you don't speak up, your situation will NOT be taken into account at all. Doctors just put patients on a standard follow up schedule. It's not necessary most of the time. Or, could be handled by a visiting nurse. PUSH BACK.

There have been two different specialists who saw my dad for a symptom and then wanted to continue seeing him for follow ups. I asked if his regular physician could order the blood test, do the check up, whatever, and guess what...of course they could. Saved us four visits a year right there. I also insist that, when a specialist visit is necessary, that they choose one who is in the same medical building as his general practitioner. They'd have you drive all over the place and not think a thing of it.

We're in a crazy healthcare situation in this country where we are customers, not patients, so we may as well start acting like it. Demand that your time be respected and that you and your husband don't waste away your lives in their waiting rooms on necessary appointments.

Likewise with drugs. Always ask, "what happens if he doesn't take it."

Is he ready for a NH? or AL? - otherwise get some help coming into the house for both of your sakes - do this before you get sick & everything goes to hell in a handbasket because you are 'down'

Arrange for your Financial Affairs so Perhap down the Fine Line, You can get Medicaid to help you Put Hubby in a Facility who can Best care for Him...You need a Break and he needs more Care There.

I hired a caregiver when my husband was ill. It was a lifesaver. I was trying to take care of him and run our accounting business. It got to be too much. At the end and after his death I took a partial leave of absence. At the very end, I hired RN’s to care for him. They were able to give him medications per his physicians instruction and provide all the care he needed. I also had Hospice. Together, he was kept comfortable and made it so that I could spend time with him and not be worn out from the caregiving duties. I could not have done it all be myself. I admire all of you who are able to do the caregiving.

I’m in the same situation. I have even posted I want a divorce. My husband has been falling and he is getting some inpatient rehab. I’m hoping they say he needs to stay long term. I don’t have room for a live in caregiver I’ll be thinking and hoping we both get some relief

First, you are a ROCK STAR for having cared for him this long! Many people get overwhelmed with care giving and lose themselves to their loved one’s illness. 40 percent of caregivers die before the person they are caring for. It’s one of the most stressful jobs and it not recognized as a job. This is my point and should become the caregiver’s mantra: “You must give to the caregiver so that the caregiver has something to give to the cared for.“ I learned to take trips. At first it was a weekend every six months, then four months, then three months with a major vacation once a year. Then I put my husband in a care facility for the last two years.

I would also like to comment on other people’s suggestions. Unfortunately, care is not standardized across the country. Adult day care may be wonderful in one place, not too good in another and non-existent somewhere else. Costs for in-home care assistance is vastly different depending on the minimum wage and cost of living in different areas. You’ll need to do a lot of research in your area as to what is available. Support groups can be very helpful because many have been through what you are going through now. You have not mentioned that he has any form of dementia so it may be harder to find a caregivers support group.

The good news is that your husband was hospitalized. You should speak to your doctor and the hospitalist. There may be a chance that he can be placed in a nursing home. A Veteran’s home may be your best bet, however, you may not have one close by. The nearest one to where I live is in the next state over, 6 hours away. Don’t cross off that possibility because of distance.

I will mention here that I placed my husband in a facility three (large!) states away where there was family available and the cost was half the price. He had dementia and didn’t usually know who I was. He had excellent care and I visited every three months until he started getting ill all the time. This year I visited 8 times in 7 months and then he passed. He had trouble swallowing and then stopped breathing. I was able to place him on hospice for the last month. The hospice nurse called me every time she visited him. I knew when he stopped eating and was able to set up final arrangements before he passed. I’m glad I had done that because he passed on July 4 and his body had to be removed within 4 hours.

This goes to everyone reading this. My biggest suggestion is to make sure you have all the legal paperwork done; power of attorney, medical power of attorney, DNR, will. Check all beneficiaries for financials, life insurance, etc. Even if you think it’s all done it’s worth it to double check. If he is still considered competent to sign legal papers, please get them done. It will make everything easier as he nears his end of life. While he’s in the hospital meet with an elder attorney. It’s worth every penny.

I wish you peace and patience as you travel through this journey. Give to the caregiver! It’s not selfish, it’s necessary.

Most in-home help is $20-25/hour with a 4 hour minimum. VA is providing you two of those breaks for free. It's time for you to hire more help. Yes, it is expensive, but your health and sanity are worth it. If there are Adult Day Care facilities in your area, they would be a little less expensive than in-home help and would give you a few more breaks. If you qualify for Medicaid, there may be some financial assustance, but as you are recently retired, your family probably has some resources. As much as you'd rather not spend money on care taking health care, your money isn't going to do you any good if you get sick or go crazy by being overburdened. It would be wiser to spend some money now to preserve your own health.

I totally understand your pain. My last 3-4 yrs have been doing for him all day all the time. My husband can take care of himself somewhat but has awful anger issues. I have been told with dementia it will only get worse. People and family told me it’s time to start looking for a place he can be cared for that I shouldn’t have to live like this. That I might be doing him better by making sure he is taken care of by professionals. Especially if it’s taking a toll on your health. So maybe that might be the right thing and time for to do the same. I wish you luck. I know it’s a hard descion . Keep updating us all.

an update: He was admitted to the hospital yesterday. It was so hard for him to move his right leg, the doctor said it wasnt safe for either one of us to take him home. They have and are running tests to see whats going on. Anyway, its a break; hes in good hands for now. I neglected to say that he does have home health twice a week for two hours courtesy of the VA. I do try to get away during that time. that and my church family is my solace.

I agree with the others that it's time for you to investigate some type of assistance. Be that someone coming into your home a few hours a week so that you can rest and do things that you need to do or some type of facility, short or long term care. Have you checked into Adult Day Centers? We have several of those where I live, the patient is picked up and delivered back home via a van M-F and while at the center they receive all of their healthcare; see the doctors, do PT, see a dietician. It can lift a huge burden from family caregivers. Start by checking to see what your husband qualifies for via your insurance. Check with your local, city or state counsel on aging as well as they may have some helpful tips for you as far as financial coverage. PS. Also take a look at the Leeza Care Connection website. Tons of helpful tips can be found there. My prayers are with you.

As far as the drudgery of daily care of your H, have you tried Home Health Aides? That is what they do; taking care of people who cannot take care of themselves. They can do all the tasks that you listed and relieve you of them. As to your own needs, things you want to do, getting away from it all, this is called Respite. And it is recognized by all caregivers that you need to have a respite every now and then. That can be as little as outside activities, volunteer work, or even going on a trip to visit or vacation. If you leave home for a while you would need to find some responsible person who could fill in for you. But it is very important to have a respite plan. I hope this helps you.

You know in your heart of hearts that it is time to place him somewhere.  It was probably time 10 yrs ago.  You have nothing to feel guilty about, so don't even let that enter your mind.  All of those facilities out there have things that you don't...special beds, lifting equipment, multiple people, around the clock assistance.  If your husband is still mentally cognizant, then he will understand when you tell him that you are tired and physically unable to manage his care.  Hopefully, you can find somewhere close to home so that your visits are not hard to manage.  You can keep involved in his care by doing his laundry and buying his personables and visiting especially when he sees a doctor.  Making this decision does not mean that you love him any less.  It means you are his wife and you are making good decisions for your husband.  It is a kind thing you can do for him and yourself.  Talk with his doctor and see if he thinks his care requires assisted living or a nursing home.

Someone mentioned the VA..Is your husband a Veteran?
If so you can get help through the VA. You can have someone come in to help out. Depending on where and when he served he may qualify for a little help or a LOT of help. It is possible that he may be classified as 100% disabled due to Service. If that is the case he would qualify for placement in a VA facility.

Have you contacted Hospice?
You would have a nurse 1 time a week. CNA's at least 2 Times a week. Social Worker at least 1 time a month, Chaplain and a variety of other services. And Respite. 1 week a year. You would also get supplies delivered that includes a hospital bed, if needed a Sit to Stand or a Hoyer Lift and medications delivered. And you would be able to ask for a Volunteer to come sit with him so you could go to the store, go have lunch with a friend whatever you wanted to do. (Usually no more than 4 hours though)

From the description you give on getting your husband in and out of the car...this is when I stopped taking my Husband in the car. It was to dangerous I was afraid that he would break a hip trying to pivot without moving his leg that seemed to be rooted in place just like you describe.

I believe you should start putting yourself first & letting someone else take care of your husband.
I know that might sound selfish but sometimes in life we really need to be selfish & put ourselves first, which has always been hard for me to do.
After taking care of my mom for 3 years, she had so many ailments, could barely walk, fell alot, diabetes, kidney & heart failure, had to clean potty chair or change diapers. It was awful watching my mother suffer & after she passed away in February, I have thought about it so much & if I could go back in time, I'm really not sure if I would make the same decision. I dealt with everything pretty well for the first 2 years but the last year is when I wish I had put her in a home because I started resenting my mother & couldn't handle taking care of her in the shape she was in & it took so much just to take care of her that I neglected my own health & became very depressed.
You have taken care of your husband for 18 years & you deserve to live your life too! After 18 years you definitely should not feel guilty no matter what you decide.
Put yourself first which I assume you rarely do.
I feel for you and wish you all the best

I am new to this site and can only echo the wisdom of those that have replied before me. The best advice that I was given was “take care of yourself.” Last week, while I was feeling particularly overwhelmed, I had to got to the Post Office. On the wall behind the Postal Worker who was waiting on me was a small card. It read “Be gentle to yourself” Those four words jumped off that wall and helped me. I have also been told it is okay to set aside a period of time, 10 minutes, 20, whatever you need and allow yourself to grieve or rage or just cry. Then, look around for something to be grateful for. You just be applauded for what you have done! You are not alone and know that you will be in my prayers.

You are lucky he can still get up and down and go in and out of the car. It will only get worse in time. Consider these the "good old days". It's far, far, far worse when they get bedridden. Right now just take it a day at a time. If you get hospice in, they will not help much other than supply you with diapers and other home supplies but you do all the work. A CNA can come in twice a week but you have to wait for them all day and they only do things like bathe them, and change the linens. Discuss with your husband if he wants a PEG tube put in because eventually he will lose the ability to swallow food and water; also be mindful it can take 2 or 3 weeks to die of dehydration. Discuss things like advanced directives.

Sounds like it is past time for you to reach out for help. He needs at the least a part time caregiver to help with his bathing and transporting. This is not something that you can continue to do. As hard as it is your health must come first. If he is a veteran he can get some help there and maybe even be placed in a veterans home when the time comes. Reach out to Veterans assistance and put in applications now. It takes times so you need to always be one step ahead. Check with state and local agencies they also have help. If he has Parkinson's he could qualify for Hospice and they have many services that are free through volunteers. I am a Hospice volunteer myself and I was surprised that not all patients are actively dying, they just meet the criteria. The first place to start is with his physician.

I’m so sorry that you have this situation. Please look into having him placed into a facility. This is too big of a job for one person.

Yes, call the VA in your County. Your husband needs more care than u can now give him. I suggest LTC, not an AL. With an AL you still have responsibilities. I had to buy Moms Depends, her personal needs, etc. LTC you pay for nothing. His laundry is done, he is fed, given meds, has personal items given to him. Big thing, no more paying for Depends. They get a Personal Needs acct where (in my state) its $50. This can be used for clothing, candy he likes, etc.

You may want to talk to Medicaid. You could become a Community Spouse. Short story...your assets are looked at and split. You can then spend down his half by putting him in LTC. When his split is gone, then he goes on Medicaid. You can stay in the home and have a car. You will have enough to live on. There is more to this.

Good Luck.

I would investigate the VA for placement of him. You have given so much of yourself already, and, this situation is not going to improve, it will only continue to get worse.

You are entitled to a life, at 69 it is time to take it back.

I wish you the very best.