I am shaking as I type this, tears leaking out of my face. My mom has primary progressive MS. She was estranged from me for years we spoke over the phone for years irregularly due to her always leaving and remarrying and bouts with mental health, I am in Wisconsin in Milwaukee and she just got transported to a facility in lone pine calilfornia in the middle of nowhere above the desert. How can I get her here we really dont have money I am distrought and sick and sad that she has nobody to visit her there we talk on the phone everyday and a cna or nursing staff has to hold the phone as she pleads to please not let her die there alone. I am at my wits end I dont know how to get her here I am newly wed and work full time and I need peopel to talk to. I feel like she is all alone and I feel like I am all alone and my heart hurts so bad. SHe's only 56 and I am 33. My name is Josh and I am scared and shattered by this disease and how it has left her crippled and trapped in her own body. Her name is Barabra. prayers
at my wits end and so is my mom - My MSAA Community
jbeam333 , my heart aches for you in what you and your mom are going through. I'm sorry for these struggles.
I pray that you can calm yourself as you think about options. For now it sounds as though your mom is being taken care of. I know the distance puts a big burden on you, but is she at least in a safe place? I know you will help her quite a bit if you can help her know she's safe and that you are working on a solution.
I don't know if someone here has suggestions for you, but know that we here are praying for you, and you've come to a very supportive place. Most of us have MS, but there are many caretakers who need support who also share their burdens and victories.
I feel strongly that there is a solution, so hold on. Josh, please keep us updated on how things are going.
Hi Josh, first of all I have PPMS and I am 61, I am telling you this so that you know that I have a slight understanding of what your mum is going through. Through my life experiences I have come to realise that nothing is impossible with God, we may not like the choices that He makes for us sometimes but in the end after a while you realise that it is for the best. Please as you are a newly wed think about your life with your new partner, please do not let this situation come between you and your spouse. Your mum is been well looked after, as Erin says she is in a safe place and you can talk to her on the phone. Be strong Josh, it's nice that you are so caring, I will be praying that a solution will evolve, blessings Jimeka 🌈 🦋
@jbeam333, I can understand that you want to be closer to your mother, and she would almost certainly benefit from having you nearby to visit her. I'm assuming that if she moved to Wisconsin, it would be to another facility, or maybe you are able and willing to move her into your home? It sounds as if she needs round-the-clock care.
You could possibly raise funds through one of the Websites where people who need money ask for donations, like Gofundme. You would also need to contact someone at the facility in California, a human resources person or social services coordinator, to find out about moving her.
They won't want to lose her, and so you may find that it won't sound easy, but if you persist, there is probably a way. You'd need to line up a place for her in Wisconsin well beforehand, and someone would probably have to travel with her. It would be very costly, and you'd need to find out what kind of insurance coverage she has at the California facility and see if it's transferable.
It's all pretty involved, and since you haven't really had much contact with her for quite a while, you may have very little notion of what she's really like. You might want to proceed slowly and get to know more about her and her needs--so that if you do decide to move her, you'll have a better idea of what would be best for her.
jbeam333 agate has said exactly what I've been thinking. I also have Primary Progressive MS and having this form of MS isn't as bad as it sounds, of course there are many levels of Primary Progressive MS you need to consider. I recommend you speak to the nurse/social worker involved with her and her case to find out what she needs before and after/or if you decide to move her.
Hugs and prayers to you, your spouse and your mom!
Hi jbeam333 I'm sorry about your and your mom's struggle's. I have to agree with agate on this one. You really need to think of what's best for your mom and yourself. As hard as that is right now. She's safe and cared for, and has a son that loves her.
I don't know if mymsaa.org can help, but it's worth giving a call.
800 532-7667 ext 154
Please know you are always welcome here, to ask your questions, to look for a friend, or to vent. But most of all, if your looking for support? You WILL find it here!☺
~Helpful Hint~ If you put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*
jbeam333 Dear Josh, this community holds you in our thoughts. You tell us that you are beginning your own life now. As a daughter first, and later a mother and now a grandmother, I believe that children have the responsibility to set their own priorities and establish strong foundations for their own lives. And this means that if I am safe and warm and nourished, all's well with the world. Though your mother feels alone, she is not; your daily calls speak to your love.
Unless you compare the setting to a sprawling city like Los Angeles, your mother is not in the middle of nowhere. Lone Pine is a small high desert town below Mt. Whitney one of several towns strung along US 395 which traces the eastern slope of the Sierra Nevada mountain range. 395 is a well traveled highway used by skiers, fishermen, hikers and those who love the region's beauty.The Eastern Sierra division of California Aging Services, located in Bishop, oversees services for those needing long term care. Someone at their office may be able to reassure you about your mother's placement. The office phone in Bishop is 760-873-6364.
goatgal couldn't be more right about contacting the California Aging Services! Before I was dx with MS and could no longer work I worked for the Aging Services here in Upstate New York. They have many recommendation. Not sure about Wisconsin and California, but I'm sure whomever you speak to they will be able to help you! They are a wonderful resource! And so is the mymsaa.org! They helped me when I was first dx and I know they can help you and your mom too!
You should look into the facility that she is in now, what is it like, what kind of care they give. Look online for reviews, complaints the place has. Then do the same for the facilities in your area. You would not want to move her to a place that the care is not good.
If you are thinking of moving her in with you and your new wife, think really hard. Is it you or your wife that is expected to care for her, how much care does she need? Check in your area for agencies that can help with the handicapped, with day services that can help give her activities during the day.
How will you get her around, if she cannot walk. You will need a lift system to move her from her bed to her chair, a roll in shower or some other kind of bath system.
I am saying these things to make you stop and think. I have a 31 year old handicapped daughter and although she has never been over 90 pounds my back is ruined from lifting her.
Would it be better if she were with you or left were she is? You may find that she is better off there and you will then find a way to visit her out there.
Just take the time to check into things before you do anything.
The people here care, so let us know what you find out.
There has to be an accepting facility for her in your area to transport her closer to you. She currently has a case manager or social worker in CA that can give you more direction, should you decide to try to get her moved. It can be a lengthy process with a lot of headaches, but it does happen.
I agree with all the others who have thought first of her care and of your new marriage. I'm just going to add to that, don't ignore your feelings or past issues with your mom, if they are coming up now. It's awful to hear anyone say "don't let me die alone" and I can not imagine how gutted I would be if I were in your shoes. I am so sorry!
jbeam333 , what excellent advice and references others here have shared with you! All of can add is that you are in my thoughts and prayers. 💕
Hi @jbeam33! You've received some really great realistic advice and reference info from others here so I don't have a lot to add. Your first step is to do the research suggested and find a way to look at the situation while minimizing the emotion for now or you won't see the forest for the trees. You might consider getting some counseling for yourself to help you sort through all of this. You said you work full time...maybe your employer has an EAP, (employee assistance plan) that has a counseling option?
I admit I was taken aback by the description of Lone Pine as in the middle of nowhere. Its not a major metropolitan area but as @goatgal said it is one of a series of small towns on a well-used highway. There are many worse places than Lone Pine! And if your Mom is safe and getting proper care...there are worse situations too.
Give yourself time to get this figured out so that its a solution that you can live with that is good for Mom, your partner and yourself. I wish you good luck and peace.
Josh, many prayers and thoughts go out to you and your mom.She never wanted it to be this way.Its important to contact sources that can help you and ask for the support you need.Part is physical part is mental and social...You still have a life and believe it or not..so does she.She is still a person who loves and cares about life, your life too.Is it possible to call a church she knows to ask for even volunteers to come visit her?Sometimes social services may be available.Any illness is traumatic, so it would make a mom feel better if you could get some counseling or someone face to face to talk with.We are here sure would give a hug if we could.
Jbeam333, There is a hospital for rehab patients in St. Paul, MN. It is called Bethesda Lutheran Hospital and is part of the Healtheast organization. I worked there for years. I know it isn't right next door, but it's a lot closer than California. Also, there is a site called GoFundMe. You can tell your story there. People have helped total strangers for less. Please try. Don't be shy about your story. Let people help you help your mom. Best of luck. MsGelfling