My mom has been married to her current husband for about 6 years, she has become very ill with cancer which has been treated well so far and contained, the problem is prior to meeting my mom he had never had medical coverage so this is all new to him and he thinks he is getting her the best treatments etc even though we see it is not in her best interest as she is definitely deteriorating. They live in a rural area, and they generally see rural doctors. She currently sees an oncologist, urologist, diabetes specialist, her PCM etc, etc. He is a Semi truck driver and insists on taking her on the road with him. Whenever he goes she never leaves the truck in these cases until they return home and this I believe is the reason she currently is suffering from huge blood clots in her leg and is currently hospitalized to be treated for that as well as pain in her abdomen. She has bladder cancer and lung cancer (both contained currently). We believe she needs to be in a rehabilitation center with 24-hour care for her to get anywhere near feeling better as she simply is deteriorating as she doesn't eat, he doesn't know about healthy food and she can't walk, because he insists on taking her in a wheelchair. I want to be able to take over her care and give her a chance to get better and have a better quality of life.
I would not put her in a rehab center. Although that might be the best place for her, she probably likes getting out and going on the road trips. In addition, it allows her husband to make a living and it probably provides him mental stress relief, She is there with him so it gives him peace of mind.
For the blood clots and circulation problems, I would see if her husband and she are up to trying a portable exercycle. There are some small ones (preferable), for under $40 and you might be able to pick up a used one. For ideas, on Amazon, do a search for exercycle under desk . Look for a portable, potentially foldable one. It does not need traction and it doesn't need to track usage, so you really are looking at the "simple" and "light" models. Many of these can also be put on a desk to exercise the arms too. My thought is that her husband could bring it along with him in the truck, and she could do some "cycling" just to get her legs moving and her circulation going while she's on these trips. I got one for my Mom and it really helps with circulation and bloating, however, I have to be there or my Mom won't cycle.
Good luck. The best thing you can do for your Mom is to help her husband out in whatever way he allows you to.
It's very frustrating to be the child of a sick parent who is also stubborn. Talk with them not at them about all the concerns the doctors have and how they think your mom's care should be handled. This is hard to do when you're in the situation because it's so frustrating. After you've said your piece it's time to listen. What are your mom's reasons for wanting to continue as she is even though it's not best for her health? Is it possible she knows something about her condition that you don't and she doesn't want you to know?
Have this sit-down with your mom and her husband. Then respect and accept whatever decision she makes. If she wants to live the remainder of her life on the road with her husband, that's her choice.
You are almost certainly correct that your Mother's traveling in the semi without getting out of it contributed to blood clots. I am certain you have discussed that with you. And you don't say whether she is doing this traveling because she loves it or because she cannot now be left alone.
Please get help for yourself with counseling so that you understand that you will be losing your Mom, and to get help with understanding that her life decisions may not be yours, and are not yours to make.
I am so sorry about this diagnosis. I am 80. I am a cancer survivor. The thought that my daughter may begin to make life decisions while I am still able, quite honestly, makes me cringe inwardly.
Let your Mother make her choices while she can. Honor them and offer your love and your support would be my best thoughts. My heart goes out to you both.
These second marriages are tricky since there is no long term history with the second spouse and it depends who your mother listens to while she still has her cognition.
However, the hospital would never release your mother anywhere until it was a "safe discharge". These are the words that you have to use with the doctor's at the hospital and/or the primary care physician.
It's going to be a lot easier on everyone if your mother goes from the hospital directly to a short-term rehabilitation. Going home with VNA help will not work because as you stated the nutrition, etc. is not up par. She will decline.
Basically if this continues this could be perceived as "neglect" when deep down the spouse may be thinking he is doing a good thing by taking her back home.
You can all attend the "Care Plan" meeting so that everyone is on the same page if that is possible. Perhaps if mother improves at the short-term rehab she can return home (to YOUR place) bring in VNA if insurance will cover it and when she's a little stronger a 4-hour per week Adult Day respite program.
You want to align your mother so that if the shoes drop your mother will already have an affiliation with different levels of care. For example, can you find a short-term rehab that has long-term, nursing home, respite and hospice. The new facilities are doing this, different steps as the needs change.
Your step-dad's lack of info is hurting your mother. Little health issues will become big things if unattended.
Perhaps, you could attend an in-person or telehealth appointment with your mother's primary care physician (PCP). Oftentimes, information a person doesn't want to hear from a close loved one means more from coming outside of the family. (the doctor)
I thought the same thing about the travel. Let's give the husband the benefit of the doubt. Probably in his mind he is thinking, I will never leave you and will take you everywhere in the truck. There's something about a man and his truck. It's like John Wayne and his horse.
You have to speak up even if it hurt his feelings'. I don't see how they "the hospital" would release your mother under the present conditions from what you have written.
There is a book I have just finished reading called "Educated". Some of the things you said about rural life are similar to the people (true story) and their perceptions and opinions in this great Summer read. People believe what they
believe.
I also recommend signing up for the portal for your mother. The new technology saves a lot of time. I also just read about Mark Cuban CostPlus Drug company new online pharmacy. It sounds like there is a lot of undoing to do here as well as some new plans need to be put in place.
Your step-dad is not betraying your mother but he doesn't realize he is hurting her by not allowing her to have the best care possible.
Many blended families are going through this. You are not alone and there will be steps along the way. I hope this helps and you are in my prayers!
Yes, it would be a lot easier for everyone if the mother goes from the hospital to a short-term rehab like you say. Only, what does the mother want? Does she get a vote? It's her life. She gets to live it on her terms.
Do they have PoA in place for each of them? Their PoAs should NOT be each other, and this case needs to be made to them.
In a similar situation I've approached it by asking my LO, "If there's one task you'd love to get rid of, what would it be?" Or ask them to name the top 3 things they's love to be relieved from. They may or may not tell you, but if they do, that's your entre to helping them.
What's he supposed to do if he's on the road a lot and your mom needs help in the home daily? Rural areas often have far few resources than metro ones. Privately hired in-home care is expensive. Another option is to contact social services for their area and find out if they have any support options. Also see if they have a local area's Agency on Aging for resources as well, or a Senior Center.
Regarding rehab: no PT will work with your mother unless it is ordered by a doctor. You thinking she needs it isn't the same as a doctor thinking she needs it. You might want to consider offering to accompany her to her next appointments and then having her assign you as her Medical Representative (this is a HIPAA form she asks for at each clinic, and she puts your name and signs it). This allows her medical team to legally discuss your mom's private medical information with you without needing her additional consent or presence. This is not the same as MPoA since you can't make medical decisions on her behalf, you're just privy to her information directly from her doctors.
Presumably she is an adult who can make her own choices. You can't take over care for an adult who is happy with her current lifestyle.