My father has been declining in recent months. Diagnosed with lung cancer that spread to his brain almost 11 years ago. He has had health problems on and off but in August he wasn't able to walk anymore. He had a bleed on the brain, when they fixed it, he has two small strokes and hasn't been the same since. He is unable to walk without assistance and is in a wheelchair. In recent weeks, he keeps telling me he wants to go home, doesn't like living here and is confused. He is home, in the same home he has been for the past 40 plus years. My mother and I have been caring for him. My sister and her family moved in with us to help and it is becoming hard to bear. We cannot leave him alone now for fear he is going to get hurt trying to get up by himself. He keeps saying he wants to go home. I don't know how to handle this. He was in a rehab facility after the surgery but left the facility worse than when he arrived. We are now 4 months in trying to rehab him but he doesn't seem to be improving. I don't know how much longer we can keep this up. How do you know when it is time to move them to a nursing home? My grandfather had dementia and we are recognizing the same behaviors now in my father and it is heartbreaking. I want him to be home as long as possible but our lives have diminished to nothing. That sounds selfish and I hate myself for it. But he doesn't even know me or the house anymore. I just feel so upset and sad about everything.
it will be hard emotionally if you do or don’t. But you can’t hurt yourselves emotionally trying to do what is beyond your ability. You tried. You cared
If he no longer recognizes any of you, a move to a NH type facility may not be a big change for him. However, there may be just enough spark left that he still is aware of his current surroundings and moving him could create a faster decline. Then there is your mom and how she might feel about moving him.
It is heartbreaking to hear someone say they want to go home when they're at home, so deflect.....ok we can go home when you get a little stronger. Getting you (the caregivers) some help may recharge everyone's batteries.
It is up to you / your spouse / family to decide and this is emotionally and psychologically difficult.
However, you have already drained yourself / your family.
It is a matter of how much more you choose to be exhausted, drained, overwhelmed. Only you can make this decision.
Yes, he will feel / be fearful. Do not let this deter you from doing what you know you need to do. This isn't a 'guilt' thing / it is doing what is in his best interest, which is also in your best interest for him.
Yes. You feel sad. This is a very sad situation. Still, you need to feel through it all and do what you need to do - for all concerned.
I send you a hug. I know this is very difficult. Gena
Years ago, my mother's elderly sister (90) was sick and in the nursing home. She had been through pneumonia and was very unwell. My mother was visiting her and her sister's mind was still good. She told my mom, "I want to go home. I'm ready to go home."
My mother said "You need to eat and try to get stronger and hopefully we will get you back home." Her sister said "NO! I'm ready to go home to my heavenly father."
She died 2 days later.
There is a book called "Final Gifts." It is very eye-opening about things people say when they are in their final days.
If it were my father, with all you described, I'd have him evaluated for hospice care. And if he qualified for it, I'd put him on that path.
Too often, we keep dragging our loved ones to doctors and rehabs, over and over, because WE are not ready to be sad. I get it. Losing a parent hurts. I just lost my father-in-law.
They get so tired. I've heard many a nurse tell of having an elderly patient who just wants to STOP it all, but keeps having tests and medical procedures because their family wants them to.
I absolutely love what you wrote! My mother wanted to join my father in the afterlife. She was so very tired of suffering in this world.
Your post is spot on!
I am truly sorry for the tragedy that you have experienced in your life. Everyone has their own stories to share.
We can learn from each other. Try to hear what others are saying. Everyone has a right to feel as they do. No one is brainwashed. These are our experiences. Please respect them.
Please don’t be bitter. It will only chase others away and you will gain nothing but misery feeling alone in your sorrow.
Go ahead and express your pain if you like. We all need a shoulder to lean on sometimes, but could you please try to be more tolerant of others opinions.
I wish you well in your journey.
I would research facilities first and then decide whether or not you want to place him. Since your mother is still married to him, whatever happens will affect her financially as well as emotionally.
When you research facilities, also ask whether they provide in-home care. In my state, many do, which can help provide a transition from in-home care to managed care at a later time. Because you are familiar with the company, if you decide to place him, the transition for you and your Mom will be easier.
You are not being selfish. You owe it to yourself to have a say in your future. There is not much press about how the family is affected by strokes. Having the stroke is the easy part; life after the stroke is very, very hard for everyone involved.
Also, I would see if you can get a 2nd opinion on his prognosis. It is possible that the stroke has done enough damage to cause dementia like behavior. Also, he could have had more strokes since the original ones, and you just didn't know.
Start planning for the future by knowing your options.
Ps I agree about Robert.. he seems to enjoy preying upon peoples fears and struggles with his own twisted agenda and a captive audience.
My only advice is to not beat yourself up. If it is too hard to bear it is okay to get the help. That is what people keep telling me. I'm sorry you are struggling. It is so very hard to watch our fathers not be the dads they once were. It is crushing me, so I know your pain. Think about what your dad would want for you.
I think it is time to look into a nursing facility.
Please consider getting in home care to help if you need some time for yourself. You can look into respite options and if you do not have the funds to provide additional care there are programs to help. We have one here called IRIS that will help him pay for his care (that includes family as care givers). They will also help fund whatever he may need in the home or if he wants to do things outside of the home.
You may have had a bad experience in one or two in your area, and I’m sorry for that. But that does not give you the right to take away the hope of an anguished caregiver that may soon have to make the hard decision to put a loved one in one of these facilities.
Google: "hospice facilities in NY"
I visited several memory care places, but none could GUARANTEE him a medicaid bed when his funds ran out (some didn't even offer medicaid beds...said they just had to leave at that point....!!!!!).
I finally found an Adult Family Home (a house, not an institution) that specialized in caring for people with dementia, and who would allow anyone who self paid for 2 years to transition to medicaid when their funds ran out.
Finally, when it became too overwhelming for his neighbor/friend (who we had been paying $2K a month to help him out) and they couldn't do it any more, I was able to move him to the Adult Family Home.
It is a horrible disease...hard on them and you:
It was a difficult year last year when this was going on...I gained 30 pounds due to having no time to myself to exercise or plan healthy meals. I'm just now starting to lose the weight and exercise again.
Shelley727: As for in-home care: If you don't have a personal referral, use a service that vets and trains caregivers (e.g. Catholic Community Services). Research, get references, try them out while you are in the house. Two hours a day, or ten hours a week (a service probably has a minimum # of hours) will give you a break to carry on. Of course it won't be as good as you! But there are advantages, and it might be a break for you loved one too, without the emotional baggage. (Maybe they will appreciate you more, for a nano-second.) Good luck!
i hope to be a care survivor too, one day.
hug!! :)
I have been devoted to my mother. 10 years ago, there was no way possible I would have considered putting her in care. I was determined if it came to that, she would live with me. She has a retirement plan/funds that would cover some people to help.
What changed - and these may seem minor, but they all add up to what is now my decision not to fight my estranged siblings if push comes to shove and she needs to go to care.
1). She is a smoker. So am I, but she is still an indoor smoker and the incredible belligerence when she has to go outside when it is too cold, too hot, too windy, too rainy is an hourly battle. Smoke is incredibly hard to mitigate and permeates every surface and facet of a house.
2). She has mobility issues and refuses to “use it” so she “loses it”. She constantly keeps me on the go…coffee has to be hot, water needs ice replaced every 30 minutes. She wants this, she wants that. She needs help getting out of the chair onto the toilet, back in her chair. This also affects going outside to smoke as I do have a step to my patio or three steps to my garage. She has woken me up four times in six hours for bathroom assistance. The fastest way to burn me out is to deny me sleep.
Sidenote - we don’t live together now and her mobility is somewhat better than it was after surgery in 2021.
3). Incontinence. She dribbles a lot and it is pungent. Supposedly, she has a kidney stone that isn’t causing any pain (thank you, God for that blessing), but it does make the urine smell noxious. 2-3 times a year she will have incidents where she doesn’t make it to the toilet in time - and has an upset stomach. That has proven to be a bigger mess than I want to deal with.
4). Pain medications seriously affect her though process. She is non-compliant and won’t listen to anyone. She passes the MOCA test with flying colors, but still won’t listen when she is told XYZ. She loses all ability to empathize or sympathize. She doesn’t care about anyone but getting her wants and needs met. She also doesn’t remember what people do for her or feel the need to adequately compensate or return the favors.
5). As hard as it has been for me, I’ve had to accept and process the fact that my mother will lie to me and about me. It is too much to manage and I respond poorly to gaslighting/rewriting past events. It can be worrisome wondering what she is saying about me. Fortunately good family friends touch base with me, so I can keep the narrative truthful. I’m also concerned she will lose her core group of friends by telling tales. The middle school hijinks can still cause hurt feelings.
My mom lived to be 95. There were days when I thought that I would drop dead from exhaustion!
It sounds like there are three-to-four people caring for your dad - you, your mom, your sister/family. It would be a good thing to start working on getting some outside help to come in.
His doctor can write orders for physical therapy, occupational therapy and palliative/hospice care. They will come out and do assessments to see what he is eligible for through insurance/medicare, etc. My mother receives weekly physical therapy and is also under palliative care.
You can also find sitters/caregivers to come in when you most need it and stay with your dad while you get a break.
I can assure you that your father will not receive that much one-on-one care in a facility - they just can't do it, so your dad will most likely suffer from a decreased level of care.
If you place him, in my opinion, he would need a sitter to be with him in addition to the facility staff. You said that he left the rehab worse than when he went into it. That's would be a red flag for me. If you look at a facility, ask questions. Will they sedate him in order to keep him still? Will they catheterize him? Will they even try to rehab him? Or will they just let him sit/lie there?
I know it's sad - so sad to see our loved one become confused and upset about their surroundings. Wanting to go "home" is normal for someone with dementia/alzheimers. My mother also wants to go home - and to her that means her childhood home with her parents and siblings.
I wish you all the best.
And safety is not just safety of the person that is recipient of the care but the caregiver.
Safety is not just physical safety but mental, emotional safety as well.
Placing someone is care is NEVER an easy decision.
It is not a "failure" to provide care is is acknowledging that the care for this person is beyond the scope of what can be done at home given the circumstances.