How can we get back to WDW? Such a big family dilemma. Help!

[meloneyb21]

I'm unsure what to do, we want to go back to WDW in the near future but at the moment I am caring for my ill mother who suffers from Lou Gehrigs (ALS)disease. She pretty much can't do anything, and that includes feeding herself and going to the bathroom. She constantly tells me that she doesn't want to be a burden and I tell her she's not, but in all honesty, it's really getting to me. I'm an only child so therefore the only one that can take care of her. She lives with me, my husband (who works all the time), and my 1 year old daughter. We're young (early twenties) and want to have fun. We don't want life to be over for us yet. We still want to travel and make it a family tradition to go to WDW among other things. I'm not working right now so it's a little easier to care for her, but happens when I have to go back? Her insurance only covers a home-care nurse for 3 days a week. She doesn't really go that many places and she really doesn't want to because she thinks it's too much for her. She'd rather stay put. But I also want to do things with my family with or without her.

I admit, bringing her along on vacations wouldn't be THAT fun but she wants me to go out and live life because she didn't get a chance to do all she wanted to do before being diagnosed. I WANT to travel and have fun but I definitely can NOT leave her home alone. I feel so terrible. I don't know what to do. How can I be happy but unselfish at the same time? She needs all day care (except for when she's sleeping) and I'm not sure if I will be able to give her all the care she deserves and still be happy. Please, I need some help.

(The first time we went, she had someone else to care for her but now that person has moved away.)

 

[ENSOCK]

Have you checked into an assisted living facility? It might be possible for them to help or give you some ideas. Also, check with her doctor, it may be possible that he can give you some places that may be able to help you.
God bless y'all and Pixie dust.

 

[janets]

First, I am so sorry that your mom has been diagnosed with this terrible disease and if you're in your early 20s, she is probably still very young.

Chronic and debilitating illnesses can affect not only the person w/ the diagnosis but those caring for them as well. You have a young child to care for as well as your mom and want both of them to have the best care.

One thing that I have read about are organizations that offer assistance to family members caring for an ill relative. They offer respite care so that you can get out of the house and get things done and often can care for someone so that you can get away on vacation. I would urge you to contact social services in your state/city and see what they have to offer or do a search on line to see what kinds of organizations are available. I have to believe that there is one for ALS sufferers that might be able to guide you to some additional care options.

I understand how much you must love your mom and wish to take care of her, but you will not be able to if you get too tired or run down to do it or you begin to resent her because of the changes you'll have to make in the long run. Please reach out to whatever services are available for caregivers. Many are offered (I think) at low cost or free and I would utilize her insurance coverage for as much as possible.

Good luck.

 

[Disneyrsh]

When I was trying to help my grandmother long distance find an assisted living facility, there were some elder care services that I found in her state (massachusetts) that were very helpful.

Try looking on the web for 'elder care services' and see what comes up.

It can be really hard trying to find the resources, but they are out there.

 

[minkydog]

First, I am so sorry that your mom has been diagnosed with this terrible disease and if you're in your early 20s, she is probably still very young.

Chronic and debilitating illnesses can affect not only the person w/ the diagnosis but those caring for them as well. You have a young child to care for as well as your mom and want both of them to have the best care.

One thing that I have read about are organizations that offer assistance to family members caring for an ill relative. They offer respite care so that you can get out of the house and get things done and often can care for someone so that you can get away on vacation. I would urge you to contact social services in your state/city and see what they have to offer or do a search on line to see what kinds of organizations are available. I have to believe that there is one for ALS sufferers that might be able to guide you to some additional care options.

I understand how much you must love your mom and wish to take care of her, but you will not be able to if you get too tired or run down to do it or you begin to resent her because of the changes you'll have to make in the long run. Please reach out to whatever services are available for caregivers. Many are offered (I think) at low cost or free and I would utilize her insurance coverage for as much as possible.

Good luck.

Totally agree I have a severely mentally handicapped child for whom I must do everything--feed, bathe, dress, diaper, carry. He only weighs 100lb, but it gets to be too much sometimes. As the main caregiver it's real easy to fall into the role of "martyr", especially since my DH is disabled as well and is of limited help. The only thing that keeps me grounded is occasional breaks--with and without DH. We have been able to utilize our respite for things like camping trips, school activities, vacations, and emergency hospitalizations. When DH is feeling well enough, he allows me to go off with one of my sisters for a short trip--and even then, we use respite for part of the time so he doesn't become overwhelmed.

Using respite care is not an admission of failure. I know you must be grieved for your mom, but it's okay to have someone come in for a week while you strengthen your own family's bonds. Your mother would want no less for you.

 

[Mom to Jordan]

I know where you are. My dad has Parkinisium Syndrom Plus. He requires assistance with all daily living skills and can be quite confused. My mom was caring for him until a heart condition required open heart surgery and complications rendered her unable to care for even herself. We live next door to them but I have a job as does my sister. We tried using in home care givers for three months and that just was very difficult and very expensive. When daddy ended up in the ER one night for increased confussion, he was placed on a Senior Behavior unit where we met a wonderful social worker. She helped us to locate the perefect assisted living home for him. It took a while for him to adjust but he is so content there now.
I brought my mom home with me as she needed much less care and did not have the dementia problems my dad had. It was still a big adjustment and caused a lot of stress. IT however was intended to be temporary and has turned out that way. She is going back home next week after five months. My dad will never return home. I am 40 and all this has been very overwelming. I commend you for dealing so well, so young. HOWEVER, you must remember that you have to think about your own marriage, your child, and your self. It sounds like having mom there is truly becomming a negative factor in your home. Looking for a assisted living facitly is very difficult and I ,whom have never had any problem with depression, anxiety etc,, ended up needing a mild anti-anxiety medication for a few weeks!!!
Call your local Department of Social Services, they have people trained to deal with senior issues of all kind. It sounds like your mom has good reasoning skills so get her involvled with the plans. Looks at every place that they recommend. The place we ended up with I would have never considred on my own as it is futher away than we would like but oh so wonderful.
Lastly do not underestimate the stress on your marriage. I have had two friends who had marriages fail while caring for senior parents. TALK TALK TALK to your husband. It is hard having a MIL in your home. Be sure that you find a way to reconnect with him each day.
Prayers are with you as you go through this. Please PM me if I can help any way.

Jordan's mom

 

[meloneyb21]

My mother is only 40. If I chose that route, would she be able to get into an assisted living program. I was under the impression that it was only for senior citizens. I guess I'm wrong.

 

[hallie615]

I am also taking care of a sick parent, I have been looking into assisted living and the price ranges from 4000.00 on up to 10,000 a month and some even higher. I am under the impression insurance does not cover assisted living only nursing homes. I really don't know anyone who can afford that kind of money out of pocket. Good luck with your search I'd love to hear what you find out.

 

[Mom to Jordan]

I do not think that age has anything to do with the admissions into an assisted living home. It may however be a much bigger chalange to find one where you mother is comfortable as most do have a lot of older and often confussed residents. I would contact your local department of socail services and ask for someone that deals with disabilities.
Money is really an issue in placement. Most assisted living care is not covered by insurance nore medicare, though with your mom's age that is not an issue. Sometimes part of the nursing care in an assisted living facility can be covered by medicaid but only if your mom has very little assets in her name. If you mom is on disability, you may be able to get some answers through them. Another thing to consider is how much care she really needs. An assisted living facility often will not take an total dependent patient and you may need to look for nursing care. in that case, much of it might be covered through disability or insurance or medicaid. I also found the cost did not dictate the quality of care that the patients recieve. Dad's care (all self pay) runs around 4000.00 a month, and that is a low figure in our area but the facility is one the very best. Go figure.
Again, prayers with your strugle in making these decisions.

 

[emma'smom]

I second the "elder care" idea. Many churches offer these services (as missions of the church, not necessarily to "convert" participants). They are basically "day care" programs for adults. The one at our church (main line Presbyterian) will have 2 nurses to assist with medical needs as well as a "home health care" type staff to assist with non-medical needs. The cost is expected to be very low.

 

[shaylahc1]

I agree with looking in to respite care. Do you have a social worker? If not, you should look in to contacting one. She can make you aware of what government services, including respite care, that your mother is eligible for. HUGS!!!!