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Thread: Long-term care for brain-injured brother - HELP PLEASE

  1. #1

    Default Long-term care for brain-injured brother - HELP PLEASE

    Hi all,
    I'm actually inquiring for my sister. Our brother suffered a traumatic brain injury in a car accident in 1971 or 72. (I was very young at the time and don't remember the exact year.) His prognosis was not good and he was not expected to survive his injuries but by the determination of my father and mother he learned to walk & talk again however he had moments when he was hostile and aggressive and has had issues accepting he's disabled. Unfortunately our father died in 1977 leaving this brother in my mothers care. She passed away 15 years ago and the only thing she did for my brother is establish a living trust for him in the house he's lived in all this time. My older sister was designated as his 'trustee' by my mother, in that she is responsible for his finances since he is incapable of handling those. But his long-term healthcare issues were not addressed in my mother's will. Nine years ago he was having some health issues and my sister took him to a doctor who wanted to check on the condition of his brain. What she says the doctor told her is that he has a lot of atrophy in his brain and at the time was told he probably had 6 months to live. Needless to say, that doctor was wrong. Regardless, he's recently started having multiple issues, mainly with mobility which has forced him to begin to use a walker. He was found a couple of months ago crawling along the ground at my parents house because he had fell down and he could not get back up. At that time my sister and sister-in-law had a long talk with him and he agreed to trying a stay in a long-term care facility. Here are his immediate issues:
    1. He cannot cook or clean so he eats microwave meals all day.
    2. We believe eating these meals all the time has caused him to have very loose stools so he ends up having accidents on himself since he can't get to the bathroom due to his mobility. He also cannot clean himself up so he is often found covered in his own fecal material. Needless to say, everyone has grown tired of dealing with this one.
    3. He is on medication (I believe for blood pressure) and he cannot remember to take it.
    4. The house my mother left him is in a serious state of disrepair and should be condemned.
    5. Of course, there is the progressive mobility issue.
    We are extremely happy with his level of care in the long-term care facility she found for him. He is receiving physical therapy, 3 hot meals a day, his clothes are washed and put away for him, and overall he is clean and well-taken care of. The problem is, he wants to come home and is trying to guilt my sister into letting him come home. So my question for the community is, how do you deal with this issue? Has anyone had the same problems caring for a sibling like this? Our fear is that he is going to walk out of the facility and try to come home on his own. The staff there have told us that he cannot take care of himself and that he needs to be there because of all the things I've mentioned. And I understand why he wants to come home because I know if I end up in a nursing home I'm not going to like it either, but he NEEDS to be there. But he gives her so much guilt when she goes to see him - which is at least once a week. This last visit he told her that she twisted his arm to make him go there. He's told my other brother that it's 'like a prison'. She is at her wits end and is starting to develop some emotional issues as a result. He is extremely belligerent and determined to go home. What can she do to convince him to stay? Will he ever accept this situation??
    Thanks in advance for any information you can provide. It's just such a struggle for her.
    Last edited by rthornton4; 03-13-2014 at 01:00 PM.

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((rthornton4)))))) ~

    Welcome to BrainTalk!

    Your sister and your family have a full plate with managing your brother's care, health and safety. Bless you all for not abandoning him or giving up on him.

    While I haven't been in the situation of caring for a sibling, I have been a careprovider to many of my elders, and of course, to both of my children. Before I share some thoughts, I have a few questions.

    1. Is your sister a Conservator or a Legal Guardian to your brother?
    2. Is she legally able to make medical decisions on behalf of your brother?
    3. Are the other residents of the facility in your brother's age range?
    4. Does the facility offer social activities and outings to residents?

    My first thought is counseling for your sister and your brother. A professional, who will be able to guide your sister in ways to make your brother feel more comfortable with his living situation. A professional, who will assist your brother in viewing the living arrangement as not only acceptable, but preferable.

    What would make this facility more "home-like" for your brother? Is he able to explain this to you? Is he allowed to have pictures, posters, a radio, a computer, or iPad, in his room? Is he able to shop with your sister and select things to put in his room to make him feel more at home in it?

    Perhaps he feels like he's in prison, because prior to living in this facility, he was completely on his own, unstructured. To have regular baths, clean clothes, nutritious food is foreign to him. Are there ways in which his days/evenings might be more loosely structured, so that he feels like he has more freedom, more control over what he does and when he does it, more "say so" in how his life is lived? Maybe he feels a loss of independence, so if there are ways to give him more independence, with supervision, of course, that might calm his fears a little.

    If he could make a friend at the facility ~ Someone, with whom he connects, who provides social interaction, and to whom he looks forward to seeing, would also help him to acclimate to his new home. Companionship is vital to our well being. Everyone needs a friend, and everyone needs to be loved and to give love.

    Social activities would also be beneficial for your brother. If the facility doesn't have on site birthday parties, or holiday parties, or if it doesn't take residents out into the community, then perhaps your sister and sister-in-law might find ways to help your brother get out. To go for ice cream, or to go shopping, or to a movie, or whatever he might enjoy doing. Perhaps once a month, he could visit their homes for a day/evening/dinner, and then return to the facility. A feeling of freedom and inclusion in the freedom of others.

    Would your brother accept the explanation that the home in which he lived was unsuitable for him to live in it? That it was no longer safe for him or anyone to live in it? Would he accept the explanation that this is his new home? A clean, safe place, where he is cared for?

    Once again, I recommend a professional, who will be able to guide your sister and brother through this process.

    Guilt ~

    This is an occupational hazard of being a care giver. It's unavoidable. It's so easy to find a hundred reasons to feel guilty. And we all do.

    But, guilt is a waste of time and energy, which could be utilized to strengthen the current situation at hand. We can't change the past. We can't undo what has been done. We can't make your brother's condition miraculously better, so that he can live safely on his own. We can't have the house he lived in brought up to acceptable living standards, apparently, as you say it should be condemned. So, there is no point in feeling guilty. That is the logical response to guilt. Practice it. Sometimes it actually works.

    It helps to remember that our loved one has no idea what is best for him/her, which is why we are a caregiver in the first place. We stepped in, took over the responsibility, and we knew going in that it would be a rocky road to travel. Your brother doesn't know what is best for him, but he thinks that he does. And there is a delicate balance to ensuring that he is always given every opportunity to express his needs and to be heard, and trying to meet those needs without causing him harm.

    Respecting what he wants, while at the same time, giving him what he needs. It's a challenge. Huge challenge.

    If your sister feels guilty about placing your brother in a facility, where he is receiving proper care, then ask her to think about how she would feel if she had left him in the house, on his own, and whatever the consequences of that might be. I'm guessing that she'd feel more guilty about that choice and outcome than the one she selected with this facility.

    Your brother probably needs a lot of time, patience, gentle persuasion, and options outside of the facility for outings to acclimate to this drastic change in his life style.

    As you said, you wouldn't want to be in a nursing home. I don't think any one would want that as their living arrangement.

    I have found that trying to put myself in the shoes of my loved one has helped me to understand more fully how to provide his/her care. So, if you or your sister, or other family members were in your brother's situation, what would you want? What would make you feel better, more secure, less afraid, more loved?

    Replace those moments of guilt with those thoughts. It also works.

    Finally, come here to talk about your experiences and gain support from others, who have walked that same path. And utilize resources on the internet for caregivers. I recommend highly our own long time BrainTalk member, Donna Thomson:

    http://www.donnathomson.com/

    https://www.facebook.com/donnathomsonauthor

    You're not alone. Millions of caregivers are going through the same things you are enduring.

    Sending prayers for your brother, sister, sister-in-law, you and your family for strength and healing, and for guidance to the most comfortable place for each one of you on this journey.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
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    Hi and Welcome to Braintalk! Rose has given much valuable advice and there's little I can add. But do come to my blog as Rose suggested (www.donnathomson.com) and the Facebook page (both titled The Caregivers' Living Room). You might find some information or inspiration there that could help guide your next steps. Also, I saw this yesterday and thought it might apply to your situation: http://www.ericksonresource.com/my-p...t-accept-help/
    I thought it was a practical and helpful article. Good luck, I'll be thinking of you and your family. Setting up a personal support network would be a good thing as well - to share the care between the institution, you, your sister and anyone else who may want to support your brother. That sort of thing needs to be coordinated and there are groups that can assist.
    Have a look here to see if there's a group near you: http://institute.plan.ca/our-work/replication/. Click 'browse affiliates' as well as 'organisations inspired by PLAN'. PLAN is an umbrella group that assists families plan a good life for adults with disabilities. Good luck! Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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