[mala55]

We just found out that my Mom (79 yrs old) is paralyzed from the waist down, a paraplegic. She had a spinal infection. They had hoped the paralysis was temporary but it seems as if its permanent. Everyone is telling me that I need to put her in a nursing home, but I really don't want to. I want to take care of her at my home. We and my Mom do not have the finances to pay privately for home care. I have an 11 month old baby also. My husband is supportive of my caring for my Mom but thinks it is not possible. He is afraid that my Mom is going to come before my daughter. Also we live in a condo that is small and we would need to find a house quickly that we could make wheelchair accessible.

What is involved in the care of a paraplegic? What is a typical day? My Mom is rather heavy and given her age does not have much upper body strength. I don't think she could assist in her transfers.


Is it doable for me to care for Mom at home?

Thanks,
Maureen

[alyssa]

Depending on the paralysis level you might have to do any of the following
- help dress
- help bathe
- help transfer/do transfer
- help toilet or change briefs regularly or do a bowel routine potentially cath care.
- help prepare meals
- maybe even help feeding, depending
- run errands if you dont have the transportation for her to go

theres a lot. its a big job you're taking on. but remember...anything is possible

[jenn2782]

I believe Alysa covered everything.

And it is definitely a big job and a huge responsibility. I am the caregiver for my fiance and have been since his accident. In the begining it can be extremely overwhelming but now that I'm used to what needs to be done it has just become a part of our daily routine.

Is your mom going to be doing any physical therapy? I know that will help alot with her strength and they will also teach the both of you how to do make transfers easier, transferring is a big part of everything she will be doing now.

I'm not sure where you live but I would look into an assitance agency for the disabled. If you can find the right social worker you will be surprised on how much they can assist with as far as home health care, home modification, etc.

Please let me know if you have any more questions. I will be happy to help if I can.

Keep you head up sweeite.

Jenn

[mala55]

Thanks Alyssa and Jenn this is very helpful. I do have a few more questions?

How often do you need to transfer during a day? To prevent pressure sores? My Mom weighs around 190 pounds. She does not have much upper body strenght due to a prior shoulder fracture and being elderly. I guess I could use a lift device?

How do you prevent pressure sores? I notice the Rehab uses heel boots and turns my Mom about every two hours?

How long can a para sit in a chair? Do you need to alternate being in a chair with being bed? Can they sit in a regular chair or must it always be a wheelchair?

What is involved in skin care?

Do you use a hospital bed?

How do you know if they have a Unrinary Tract Infection?

How do you prevent pnuemonia/respitory infections?

Thanks again!

Maureen

[alyssa]

How often do you need to transfer during a day? To prevent pressure sores? My Mom weighs around 190 pounds. She does not have much upper body strenght due to a prior shoulder fracture and being elderly. I guess I could use a lift device?
Depends. Is she using the toilet? If so she'll have to transfer everytime she needs to use it. If not transfering between bed and chair when desired. Lifts are handy, but costly.

How do you prevent pressure sores? I notice the Rehab uses heel boots and turns my Mom about every two hours?
In bed, turning is important. Anything to change pressure points. In a chair it is recomended that you weight shift ever 15-20 minutes, whether it be leaning forward, tilting your chair back or using your own method of weight shifting.

How long can a para sit in a chair? Do you need to alternate being in a chair with being bed? Can they sit in a regular chair or must it always be a wheelchair?
Work up a tolerence. As long as your mother has the balance and trunk control, and can be transfered she can sit anywhere.

What is involved in skin care?
moisturize. dont wear tight clothing. dont sit/lay on wrinkles and creases. check skin regularly.

Do you use a hospital bed?
i do, but not everyone does.

How do you know if they have a Unrinary Tract Infection?
fevers, nausea, cloudy urine, sediment in urine and concentrated urine are all symptoms. some feel pain/pressure in the bladder/kidney area. if this is the case send a urine sample to your doctor

How do you prevent pnuemonia/respitory infections?
the sameway anyone does really. get your mothers lungs checked often if you're worried. I do something called breath stacking w/ assisted cough. I'm trying to find you information


hope i helped...

[jenn2782]

If your planning on using a lift device I would recommend talking with the social worker at the rehab hosiptal before your mom comes home. This way the house can be set up for her. I'm sure you will be able to find an agency to assit with the costs of things also.

Skin Care is something that needs alot of attention. I'm not sure what everyones story is but once skin break down starts it seems to spread - Fast! I misjudged a preasure sore and within 3 days it got a lot bigger and very red. I eventually got it under control with these very expensive bandaides (Duoderm) and a special lotion. I find that using a mild soap and wash cloth on his legs, hips, butt and feet seems to help get rid of the dead skin and I'm not doctor but I believe this keeps his skin healthier. Also you can give your mom vitamin E tablets, thats known to help with skin. Vitamin K also helps but its hard to find. I use vitamin K creame on my fiance's legs and feet because its known to improve circulation which is very important for para's.
**Always remember no matter where she sits she still needs to do weight shifts to prevent sores. And like Alyssa said depending on how good her trunk control is will depend on where she can sit.

Transfers, vary by day in my house. From bed to chair, chair to toliet, chair to shower, chair to car..it really depends on what your doing that day and how your moms schedule will be.

Urinary tract infections - Alyssa covered all the systoms. But she should drink cranberry juice or if she doesn't like that she can take a cranberry pill everyday to help fight infections. She needs to drink a lot of water to keep her bladder flushed out and she should stay away from soda.

As far as Phemonia (i'm a bad speller) my fiance has this breathing device that is suppose to build up the strength of the lungs the rehab he was in gave it to him (not that he uses it) but its good to have incase a chest cold starts he uses that to help strengthen his lungs.. Too much laying flat on her back will put her at risk.

Is she going to continue physical therapy after she gets out of the rehab? I'm sure they will give you a ton of information and its important that you take part in the physical therapy and ask questions..even if you think its a stupid question..ask anyway. I know I did.

I'm sorry if I rambled on. I hope this helps.

Let me know if you have any more questions and I will try my best to help!

[wheels5894]

I think the chief thing to think of here, mala55, is just how much work will be needed. of course for a normal para there is not much needed at all -we manage the getting up and dressed, showered into the car, drive - well the list goes on but all these without any help. however, it depends on strength and technique.

You have said your mu is heavy and is not strong in the upper body. This looks like you will be doing all the above plus meals and trips to the loo for her. That amounts to a whole lot of work in a day when you have your own family to look after. I am the househusband at hom and reckon doing the house, cooking and shopping takle up quite a bit of the day. Are you going to have the time to manage possibly without any rest during the day?

Ask some of the tetras and they seem to be able to do all sorts of things they ought not ti be able to do due to learning techniques. Really we all do whether taught of invented and it is these techniques that make a busy life possible. your mother, on the other hand, will probably not manage to deal with such things and is going to be just dependant on you. Which brings us to -

YOU. mala55, you need to think of how this would fit your life and, in particular, how things work if there is a problem. If you contract flu, who would do the looking after then? If, through a slight mistake you pull something in your back leaving you flat on your back in pain. Who would lookafter your mother then?

I really think the idea is a non-starter given the work and strain on you and the risks if you couldn't help for some reason. I'd say she would be better off in a nursing home where you can visit as often as you like, refreshed and happy to see her. you can enjoy quality time with her rather than struggling to deal with her needs and never getting to your own. It really is too much for one person and I think your husband is right in this case. Your mother is easy to visit and your family will be able to function as usual bringing up your child.

[smokymtn memories]

I'm afraid I'm going to have to agree with wheels5894, the amount of care that will be needed for your mother will be too much for you. You not only need the time to care for your 11 mo old child, but you need the time for enjoying this child.

Your mother is going to need a lot of care while she rehabilitates and learns to deal with the paralysis. At 79, this will be hard for/on her and I honestly believe she will do better, try harder with strangers.

You would be able to go see her whenever you wanted and even help out at times. Plus, you never know, she could possibly get to the point where you could take her home.

I believe the amount of time and work it will take with mom, would put a lot of stress on you and your family. I doubt if this is something she would want. Good luck and I hope everything works out for you.

[Aaron Jazz]

mala55, on Aug 27 2007, 01:15 AM, said:

We just found out that my Mom (79 yrs old) is paralyzed from the waist down. She had a spinal infection. They had hoped the paralysis was temporary but it seems as if its permanent. Everyone is telling me that I need to put her in a nursing home, but I really don't want to. I want to take care of her at my home. We and my Mom do not have the finances to pay privately for home care. I have an 11 month old baby also. My husband is supportive of my caring for my Mom but thinks it is not possible. He is afraid that my Mom is going to come before my daughter. Also we live in a condo that is small and we would need to find a house quickly that we could make wheelchair assessible.

What is involved in the care of a parapeligic? What is a typical day? My Mom is rather heavy and given her age does not have much upper body strength. I don't think she could assist in her transfers.


Is it doable for me to care for Mom at home?

Thanks,
Maureen

[wheels5894]

Were you going to say something, Aaron?

[Somebody]

Welcome to the board.
God bless your mom in her journey.

Alot of great advice.

After being in a Nursing Home,
I'd do everything possible to care for her myself.
Hoping you can get good Home Health Care for her too.

[miss piggy]

Hi mala55
Welcome

[Tea and Sympathy]

Hi Maureen,

You ask, "Is it doable for me to care for Mom at home?" Of course it is. But just because you can doesn't mean you should. I know how hard it is to see someone you love struggle. However, I do agree that she will try harder with strangers. One thing that you need to think about is...I know you love your mom. But you have a new baby daughter. Do you want to sacrifice the things you should be doing for her to make her happy and healthy because you need to take daily care of your mother? There is a huge difference between a young person with a spinal cord injury and a 79 year old, in mindset alone.

My grandmother was paralyzed on one side when she fell and broke her hip and the repair operation didn't go well. My father brought her home to take care of her. He did everything for her -- got a wheelchair, a hoyer lift, her own room in our house, everything. SHE was the one who gave up. She wouldn't help him transfer her to the toilet so she ended up in diapers. She refused to get in the wheelchair and join the family in the main room, so her meals had to be brought to her in her room, and after awhile she stopped feeding herself. I told my father to get rehab specialists for her -- she refused to see them. It became a night mare where my father couldn't go out unless someone else in the family was willing to be home in case something happened. When my father needed emergency surgery, we experienced a horrible week of crisis until we could find a home health care aid my grandmother could tolerate. When my father got an infection and ended up in the hospital for two extra weeks, all he could say was, "Don't worry about me...just take care of mom."

It is selfish of you to ask your husband and your child to have less of you because you want to be there for your mother. You have no right to turn their lives upside down. More importantly, you owe it to yourself not to be torn in two because you can't decide whose needs to address first, and that means you won't take care of yourself, either.

I'm not saying don't ever have your mom move in, and not to help her with the things she'll need now. You are obviously a loving daughter and this is hard for you. My grandmother was 90 when she came; 90 is not 79. Your mom has a lot of life left in her. Make her work for it. Make her work to learn what she needs to know to be independent, and encourage her with visits from/to her granddaughter. It wasn't my grandmother's physical problems that caused all the strife in the family...it was her unwillingness to help herself, the fact that she gave up, and would choose to remain depressed and bedridden rather than take what life still had to offer her. You don't want to resent your mother for being a burden. If you are there, ready and willing and able to take care of her, you also have to be careful that you don't enable her into that mindset that she can't do anything for herself and then she becomes dependent on you. What she has the ability to do on her own, she should do on her own. Then you can always be there to help with the rest.

You have a wonderful family of your own. Your mom would most likely be a welcome addition once she learns what she needs to do to help herself. This will give you time to adjust as well, and a little bit of difference. Your mom has to come to grips with this on her own terms, in her own time. Love her, support her, be there. That doesn't mean becoming her full-time caretaker.

My grandmother died in May. She was with us for two years. My father is still trying to get past the guilt that he didn't do enough for her. My mother is still trying to cope with the fact that for two years, her needs were non existent (and she is undergoing chemotherapy). My family dynamic was dysfunctional way before my grandmother arrived. But it was so sad to see her give up, and not enjoy her grandchildren or great grandchildren, not want to participate.

These are just some of the things that you might want to consider. As I've said, the physical care was completely manageable.

Whatever you decide, let it be the best for you and your family.

Laura

[mala55]

Thank you all for your honesty and input. It is hard to think clearly and objectively when some one you love is suffering. I am still trying to decide what is best for all of us. My heart is broken for what has happened to my Mom. My Mom also has mild Alzheimer's. She functions well mentally right now, but is hard to predict what the future will hold. The Alzheimer's coupled with the paralysis is not a good combination.

My Mom has been in Rehab for a few weeks. It is clear that she will be very, very dependent given her age. Yesterday she was sent back to the hospital because of a fever and low oxygen. They determined that she has a UTI and they are still trying to rule out any other active infections. Very scary. I am afraid given her age and current condition she will suffer many complications. I am not sure that she would be as well cared for by me at home as in a nursing facility.

I am also trying to step back and understand how taking care of Mom at home will impact my husband and baby. I have always been a believer that you do anything you can to help and care for your family especially the ones in the most need, but I am not sure my marriage can with stand this situation.

Thanks again!

[wheels5894]

From what you say about complications Mala, I think you are now working on the right lines. You can now see, I think, that the problem of caring for your mum is going to be a hard and difficult one and, really, one that is going ot need more than one carer. A nursing home ought to be able to deal with her physical needs and you can visit and enjoy visiting rather than only doing the slog at home.

in the long run, You must think of your family first and a nursing home wopuld let you do that as well as being able to be with your mother.

[Joes_Nat]

mala55, on Sep 3 2007, 08:49 PM, said:

Thank you all for your honesty and input. It is hard to think clearly and objectively when some one you love is suffering. I am still trying to decide what is best for all of us. My heart is broken for what has happened to my Mom. My Mom also has mild Alzheimer's. She functions well mentally right now, but is hard to predict what the future will hold. The Alzheimer's coupled with the paralysis is not a good combination.

My Mom has been in Rehab for a few weeks. It is clear that she will be very, very dependent given her age. Yesterday she was sent back to the hospital because of a fever and low oxygen. They determined that she has a UTI and they are still trying to rule out any other active infections. Very scary. I am afraid given her age and current condition she will suffer many complications. I am not sure that she would be as well cared for by me at home as in a nursing facility.

I am also trying to step back and understand how taking care of Mom at home will impact my husband and baby. I have always been a believer that you do anything you can to help and care for your family especially the ones in the most need, but I am not sure my marriage can with stand this situation.

Thanks again!

Hello there,
My heart goes out to you. I hear your pain when you explain the condition your mom's in...for God's sake...it's you mommy!!! As much as you want to drop everything and bring her into your home, I can't help but think of some key things you've mentioned...you're in a limited living space, you have a new child to raise and the fact that your husband (whom you made a commitment to) feels it would be too hard.

You've gotten some very sage (unbiased) advice from alot of people here. It does sound like you have a very realistic idea of what you're up against. I truly feel that you can help your mom most by putting her in a place where she has 24/7 care and where you will be able to have a very active hand in helping her along the way. Take advantage of the healthcare system to the fullest! You owe it to you husband & little one to be there for them. Remember, you could actually do your mom & your family more harm than good if you spread yourself to thin. My advice from experience is to continue to keep the lines of communication open - and ask a boat load of questions! You'll make the right choice.

My prayers go out to you & your family.

Nat

[Jilly]

Hi mala55,
First of all I want to commend you on your concern for your mother. A lot of people wouldnt even consider caring for her themselves especially in your situation.

Back in the early days of my marriage, my husband and I cared for his mother briefly. She had altzimers. She was also able bodied.
It caused a lot of stress with my marriage. It was hard. My husband and I were both working full time and had no children at that stage. We didnt know what on earth she would get up to during the day and she was often confused. We ended up placing her into care for her own safety and for our own mental wellbeing!

I now work in a rest home here in New Zealand. I love my job. The caregivers and nurses get really fond of our 'oldies' and we care for them as if they were our own. All the equipment that is needed is there. Medical attention is there. Plus there is a whole team of us working with our residents. Its hard on your own. Some of our patients are almost fully independant, and some need full care. We do whatever is needed with consideration and respect for their privacy. Their families are welcome to visit at any time, do some caring for themselves if they want...and also are welcome to take their parents out when ever they like....even overnight.

Not all homes are the same, many are better than others and I believe I work in one of the better ones. If you choose to place your mum in a home, then take the time to check them out properly.

Having both cared for my mother-in-law in my home, and worked in a resthome caring for the elderly, I have to say I recommend you placing her in one. There will be a lot more time for your husband and little one, and your mother will be well cared for.
Its a hard decision you have to make here, I wish you the best of luck with it.

[jenie123]

I, too, am struggling with the same question. My father has been disabled for several years and recently fell and broke his back severing his spinal cord between the T7-T5. He is paralyzed from the nipple line down. He is diabetic, already on blood thinners and weighs about 400lbs. He has a lot of upper body strength, but up until his accident he was still able to get himself dressed and use a walker to walk short distances. My family is very close and we want to try to take care of our father at home. However my concern is that we cannot provide the proper care. I say "we" loosely, because in reality, it will mainly be my 3 sisters as I live several states away, and my mom works full-time and is not really emotionally capable. I worry because one sister just doesn't understand that he will need someone with him at all times. He just came home from the hospital after 2 weeks, and was not strong enough to go to rehab. Right now he is in a hospital bed with no rails, has no lift and a gel mattress that is about 5 years old. Today, for example, my mom had to work at 05:30 a.m. No one got to my parent's house until nearly 9am. Now, my sister argues that "he's just sleeping anyway, so why does someone need to be there?". I disagree. What if he falls out of bed? Or chokes. Or goes to the restroom? She says, 'he has a phone, so he can call us". But right now he is still on so many pain meds, that he's not the most lucid. I do not want to put him in a nursing home...but I'm also leary of the "let's give it a try" mentality. What if "giving it a try" harms him? Please someone tell me what we are looking at? I really think a nursing home, where he can get the care he requires, and we visit him very often, is the best choice. My mom, I think, is just afraid to make that decision for fear of the backlash from my sisters. Am I right to be concerned? Do I even have a say since I'm not going to be the one caring for him? Any input is deeply appreciated.

[Tetracyclone]

All homes are different and as you read through some of the threads here you will hear stories of many different situations, some good, some bad.

My Dad was in hospitals and a nursing/rehab home for most of 2007. i spent at least 6 hours a day with him there first to keep his mind oriented. many elderly get disoriented in homes because it is not familiar. A daughter is familiar. It is much the way 2 year olds never wander far from their mother's knee because all information is being processed in relation to Mom. Her presence creates safety.

I found it was very important to advocate for him every day. Nurse Aides will leave a patient waiting for an hour before responding to a call button. He needed things a certain way or he could not walk the next day. They would not listen to him cuz he's old, but if i insisted on the things he was saying, they got done.

Dad is now in another rehab facility after a stroke, and in my sister's town as she has cared for him at home since my accident. She cannot spend a lot of time at the Center- just an hour's visit a day. I can hear in his voice he feels cast adrift. I know he is OK because he is complaining, but without a lot of family presence his mental orientation is precarious, and he knows it. He is worried.

Homes are necessary, but I advise people not to leave their loved ones unattended until you know the place well and have confidence in the care.