My mother had stroke, what are choices for care (long)

garden_wenchFebruary 27, 2006

My mother is 85 and had a "bleeding out" stroke 7 weeks ago, she recovered from the surgery and went to a re-hab facility for 1 month. I live 4 hours away in another state and visit regularly. The Dr. wanted her to go to a nursing home for 1-2 months, but she and her long term live in significant other argued against it and she moved back into the house. They are not married and he does not have power of attorney. I have nothing against him, he is a good person, but he has very low vision and he cannot take care of her as well as they thought. She is also diabetic.

He and I had a long talk tonight and he is very upset that she may have to go into a home, probably not short term either. She is having problems with vision in one eye and cannot remember certain words, although her sentences make sense other than that. But it is hard to tell if she has lost more ability than that mentally. She is having trouble controlling her urine and bowel movements, and i am sure she is not showering even with the bench in the tub. She has fallen 2 times since she has been back home for a week. And she absolutely is against going in a nursing home She says it is "like sending a dog to the pound to die". She had hip replacement 2 years ago and ended up in a nursing home that really was a dump and then to a better place but checked herself out in 1-2 days.

What are the choices for her care?

I wouldn't have any problem with her having people come into house but it is small and no extra bed room for someone to stay. I am not sure of that caregiver situation costs and what her financial resources are (maybe $170,000) bank account and home.

Nursing homes, she really doesn't want to go. What happens if she refuses to go? Can a Dr. force her to go? Will the nursing home take all of her money & house? Would it be possible for signicant other to stay at the house. I don't know anything about medicare rules and regulations.

I'd like people to be happy but now it seems impossible. He is worried that she will fall and be injured or worse. She won't go into a home willingly.

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Oh, your poor Mother! She's got to be frightened on top of the health problems.

You need to spend some time and research all manner of facilities. There are retirement communities with full apartments, and that offer some services, such as meals served in a dining room, local transportation, housekeeping, etc.

Then there is Assisted Living, sometimes available in a retirement facility. So on top of the meals, etc, this can include the services your mother probably needs, such as help with bathing and dressing, and with bowel and bladder control, even if that means Depends.

"Nursing home" really refers to full-time care of a skilled level. I doubt if that's what she needs, but it might come soon.

You say you live 4 hours away? It's probably best that you do some research both where you live as well as where she lives. Start with the phone book and call and make visits. You'll get the full tour, and get a handle on what's available and what things cost. Talk to the residents as you go around with a staff member, try to have a meal there. But I'd try to visit as many places as possible on a fact-finding mission.

And you seriously need to talk to an Elder-Law attorney, someone who specializes in protecting assets in the face of nrsing care, and will also set you up for proper legal powers of attorney, etc. You'll have some tough questions to answer regarding her Significant Other. Maybe you'll open a joint account, separate from the rest of her assets, so that he can pay bills. Or talk to them both about moving closer to you. Do you have other siblings to help you with this? 4 hours away is what? 200+ miles? A long way to go in an emergency, and believe me (been there, done that), more and more emergencies come up all the time, especially now.

So, start with an Elder Care attorney, and the phone book. Take time and look at care facilities. They are not all the same, and should not all be seen as 'nursing homes'.

If you want her to have someone come into the home, it does not need to be a 24 hour thing. Many people would be just fine with a caregiver onsite for part of the day, and since she is not completely alone, this might work very well.

If you have an agency that deals with the elderly, a COuncil or Alliance on Aging, or a county/town office, they can also give you some good guidance.

This is going to eat up a big chuck of your time for a couple of weeks, but it is do-able.

Bless you for asking all the questions, and know that this is a good place to come and lean on shoulders for a little support.

    Bookmark   February 28, 2006 at 3:38AM
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Fairegold, thank you so much for your kind words, it was so nice to have someone reply right away.
Yes I live 200 miles away, and I have asked them to move into a retirement cottage where they live or here. But they really aren't interested in that. I do have a sister that lives near her but she has always kept a distance from the family, so my mother sees me more often than my sister who lives about 25 miles away. (Every family has its garbage, but I've moved on and tried to deal with things in a moving forward way, forgiveness of past wrongs can help.)

I really think the assisted living option would work for her. She had trouble climbing the steps to an eye dr. appt. and couldn't go in. I don't think she will ever drive again.

I am pretty sure their accounts are separate, and it is her house from when she and my father (passed away 20 years ago) were married. I doubt she will come and live here, she ahs 2 sisters living nearby but they are not consistently helpful.

I did find phone numbers for Office for Aging in her county. I will call them today.

Thank you again.

    Bookmark   February 28, 2006 at 6:37AM
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A joint account with your Mother's partner on it would be a very good idea. That way he can help pay her bills without access to all her assets. And be sure to talk to the attorney, too.

I am caught up in a great book from my class, "Listening With Different Ears: Counseling People Over 60" by James Warnick.

I'm going to start recommending this book to everyone. There's lots of insight here about the person in what Warnick calls the Third Age.

Here is a link that might be useful: Listening With Different Ears

    Bookmark   February 28, 2006 at 10:53AM
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The office for the aging is the best place to start. It does sound like assisted living is her best option. Many places allow spouses and significant others to share a small apartment. If he is willing to do that, it may help her to see that itÂs not such a bad thing. That way, they could be together and they would both be safe and well cared for. It sounds like your mom may have been somewhat caring for her SO before her stroke, and thatÂs now come to an end. Have you made sure she can still read? If sheÂs having vision and cognitive problems and he has impaired vision, someone else needs to be in charge of medication (for him too, if he has any). I would first look at getting someone to provide them with help a few days a week while you decide what her best long-term option is.

    Bookmark   February 28, 2006 at 4:35PM
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I'm so sorry, this must be so hard for you. She should have gone to the Nursing Home right from the hosiptal. It's called sub-acute care and Medicare pays for it. She would have gotten a lot of physical and occupational therapy, and may well have recovered enough in one or two months to return home quite capable of caring for herself. That is so critical after a stroke, for recovery. Now that she's at home, that option might not be available to her. She still needs Medicare Home Health Services - such as PT and OT or she won't get better.

I agree with Helene - a good assisted living facility - for both of them, is the best solution - and once there, she will probably qualify for Medicare services - specifically the therapy she needs to get some of her indpendence back.

Good luck.

    Bookmark   March 2, 2006 at 7:48AM
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I hope by now you have received some legal advice to protect your Mom's income regardless of the person she is living with. Sounds like she belongs in a nursing home and that is a hard decision to make Does the person she is living with have any money or income?? If not your mom still needs to have her life and income protected, after all if all the money vanishes who is going to pay for the care. Please put the funds into either a trust fund, or in a joint account with you and her, but limit the amount of the money she can withdraw. That is what I had to do, so my brother would not get money for "his needs".

    Bookmark   March 11, 2006 at 9:54PM
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Ilook at nursing homes just as my parents did - last stop before I die. Nothing positive about it. I have been in different nursing homes and couldn't wait to leave. Nothing cheery about them. Very depressing to me and God help those that have to live there.
Most nursing homes are shorthanded and do not pay a good wage to attract quality personnel.
You might want to check with her doctor about the prose for physical therapy now. If it would be beneficial, he can write an order or prescription for it. There are agencies that transport the elderly to appointments like this. The dept of Human Resources may be able to give you some insight.
Medicare only pays for nursing home care for a short period of time. Then you pay if you have the funds or if not much money or assets, you could qualify for medicaid. THEY take all assets. If you sell the house, they get that too.
Would it be feasable to sell the house and car as she won't be driving, put that with her savings and look into a retirement home where they do have assistance. Some have a RN on duty at all times, provide transportation and offer other ammenities. I understand it's like an apartment where they don't have to get rid of their personal belongings unless maybe just too much furniture.
In Assisted living, the person has to be able to care for themselves. It is normally one room for the living rm, bedroom, and eating area. The kitchen is very small with a small fridge and a microwave. This means most of the personal belongings have to go.
I don't understand why arrangements have to be made for her friend too. Does he have a family? Does he have money set aside like your mother? Has he helped with expenses or has been being taken care of? You don't need to answer those questions to me. It is none of my business but if it were my mother's situation, I'd do what is best for her but give him time to make arrangements. If the law in your state recognizes common law marriage and by what standards, you will have more to deal with.
The doctor placed my mother in a nursing home with my brother's approval. Momma is very unhappy. I'm looking into Elder Care at home as that's where she wants to be.
I guess I look at it that mother's make sacrifices of all kinds in raising us. They have THEIR home, THEIR friends and THEIR way of life. It's just so sad to take all that away.
I wish you the very best as I understand completely how heartwrenching the decisions are and sometimes the tears seem endless because it is Momma and we love them so.

    Bookmark   March 13, 2006 at 12:21AM
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Garden Wench, how are you doing? You are all in a very difficult situation, and IÂve been thinking about you.
One thing that I neglected to mention is Power of Attorney, both medial and otherwise. One of the smartest and hardest thing we did with my father was to get Power of Attorney before we needed it. When we did have to use it, we didnÂt have to go to court to prove him incompetent first. The bigger issue here was getting my AlzheimerÂs-stricken father to acknowledge that the time he would need us to make decisions for him might not be too far away. Because your mom and her SO have been managing thus far, this might not be an easy battle. Use this time while your mom is competent to find out what her wishes for her future are in various scenarios. Stress that you want someone to have POA to make sure that she is in control, even is sheÂs unconscious. A POA will allow you to talk to her insurance company and doctor on her behalf. When the bills from the hospital stay start coming in this may be important, especially if her speech is compromised. Make sure that your mom has both a will and a living will. I know this may sound a bit extreme since your mother is far from deathÂs door, but having all of her ducks in a row will make everything much less stressful eventually.

We took my dad to visit a few assisted living facilities before he needed on, and he picked out where he was going. This kept him in control of his own destiny and made things easier on him.

I reread your original post, and realized no one had addressed one of your questions. No, a doctor cannot force your mom to go into a nursing home, or to do anything else for that matter. A doctor can only recommend. A person with POA could.

    Bookmark   March 13, 2006 at 12:37PM
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My folks are appreciating their dr. more and more, and they are just starting to look to him for advice. It's almost like they want someone else to say they should live in assisted living (they are getting close to making the decision), as if THEY wouldn't or couldn't decide. More and more people that are around them are seeing the same thing, they should be going the next step of searching and reserving a place. I think the dr. can very strongly recommend that your mom (or my folks) go to Assisted Living; and I have heard folks say that their dr. would not let their mom go home, that she had to go to a NH or AL, but I have not experienced that yet.
Sounds like you have to decide if your mom and her S.O. HAVE to stay together... and if you could possibly bring her (them) closer to you (this situation is going to need your presence more and more). Our Assisted Living Facility that I like the best has a Health Care Co. Office in it. They are separate but available anytime, at a price, of course. But it's a great way to start with a little extra in home care, if your mom can afford it. This particular place is over $2000/mo. for both adults, the health care starts at $40 or $50 for some really basic things. But my folks don't need much now; they are just so isolated from friends and activity since they don't drive, and to be blunt, many of their friends are infirm or gone.

You have got to figure out how much she can afford, how much HE would contribute. Surely YOU cannot make his decisions for him, so that needs to be cleared up too.

    Bookmark   March 13, 2006 at 5:53PM
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Check with her bank. Banks sometimes require their own POA to handle finances.

    Bookmark   March 13, 2006 at 6:11PM
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Thank you, everyone for your kind thoughts. Here is an update. My mother got very upset with me about 10 days ago. I had spoken with her calmly and rationally, that going to a nursing home for more rehab was not the same as being sent there forever, she seemed ok with that and said she would call me later. She didn't but I didn't think it was a problem. When I called 2 days later and spoke with her significant other, he said she won't talk with me, that she is mad that I believe the "lies" he is telling me. And I can hear her in the background, saying as much. She thinks he and I are conspiring to put her away. And I called the next day, same story.

Ok, so I decided to call her Dr. and expalin the situation and was basically told to keep involved the best I can.

They don't have common-law marriage in their state. They both have wills they did themselves at home, based on previous will from an attorney.

I don't see how she will ever sign over power of attorney, or a living will - she would never want the plug pulled. She's made that well known. There is no way to protect the assets, because she is living in this denial - if you don't think about it - then it won't happen.

I suggested getting someone there for 12 hours per day, then SO could get a break. But I really think she belongs in a home - at least for 30-90 days, until she can get stronger.

Mentally and physically she has gone downhill, she won't do physical therapy. I mean I'm sure she is tired and in pain but she won't get better like this. She was better at re-hab before she went home.
I called So's daughter to see how things were going and this morning she had a Dr. appt and she could move her legs to get in the car. She was screaming my legs are broken, so they called an ambulance, she is staying overnight, even though Dr. said it wasn't necessary. So it will be charged to her. Dr. will she her tomorrow and check her and send her to a nursing home? I just don't see how things can work out as they have been. So says he can't take and will move out with 1-2 months notice.

So, if no Power of attorney is signed what can I do? I called my sister and she was her usual no help. She doesn't want to be involved or in the loop.
Sorry to vent. I just feel there is little I can do. But once things hit rock bottom I will be left with a huge ordeal.

    Bookmark   March 13, 2006 at 10:00PM
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When my dad had his stroke, there was a lot that he was NOT doing that was obvious to me. His personality became very quiet, humorless, and his mental process slowed down quite a bit at times. So I started attending all the dr's visits with him. BUT there were some things I didn't want to say in front of Dad because I knew his feelings would be hurt that someone thought him grumpy and umcommunicative. So I wrote the dr. a note about all my observances (and what Mom had told me) and handed it in when we entered the office. The dr. seemed to have read my notes because he asked Dad questions about his mood, even tho Dad peps up with this dr. every time. Dad responds well to the young and vibrant and exciting in a real positive way, almost seems normal again for those 10-15 min.
Maybe you could do this. Express your observances and fears and be specific about what you THINK she needs for caregiving, maybe even give some options, explain about the signif. other and what you are concerned that he cannot do for your mother. Be clear about who will step in to help her if she has another difficult time.
I asked Dad's Dr. to PLEASE not let Dad drive and I feel like my comments made an impact.
I feel for you being hrs. away. The telephone is so different from face to face conversation. Do you think your mom would not see you and discuss this with you face to face??? You need to find a way to reach her in a very loving way...her attitude change shows a sign of something. Maybe you don't have enough of her trust to start with, I don't know, but more than likely, she's headed down a new hallway of life and is scared, hurting, maybe a bit desperate. You know her best, don't give up. I'll be thinking of you!

    Bookmark   March 13, 2006 at 10:40PM
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IÂm so sorry that yÂall are going through this. These illness-induced personality changes are seldom for the better, and itÂs just heartbreaking to see this person who is and is not your loved one.

Could you convince your mom that the NH was a hospital for a few weeks? Most of the nursing homes IÂve seen that did that kind of rehab are full of hospital beds and staff in scrubs. Just donÂt use the term "nursing home". If her SO wants to continue to stay with her (and it certainly sounds like he shouldnÂt live by himself) he could suggest that they move to a new "apartment" where they wouldnÂt have to worry about the yard or cooking. My brother and I found that our dad identified my brother as the bad guy who was trying to take all of his stuff, but trusted me. Seeing as you and the SO are both "liars", is there someone else who might be able to play good cop?

It sounds to me that you feel that sheÂs not getting the care that she needs, and I agree with you. It also sounds like sheÂs got a bit of dementia and/or paranoia. YouÂd have a pretty good case to have her declared incompetent and have someone appointed as her guardian. IÂd start investigating that while continuing to get her into a NH or AL without such drastic measures. Talk to a lawyer who specializes in elder care. The bit about her insisting that her legs were broken and she had to go to the hospital but not remembering that sheÂd had a stroke should be enough. And that her SO just drove her to the hospital and let her stay overnight knowing it was unnecessary indicates that heÂs in no shape to take care of her. Also, ask her doctor about this. He may be able to help you.

A living will can also specify not pulling the plug, but thatÂs what many lawsuit-conscious hospitals will do anyway.

    Bookmark   March 14, 2006 at 11:09AM
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