Realities of Life
For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skin care, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skin care) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.). At night, the work increases again with preparing meals etc., for the next day, bath time, night time rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.
Lynn is very fortunate in that he has me. I have a nursing background and I take very good care of him. I also have a servant’s heart so I make sure both his necessary and nice-to-have needs are met. The nice-to-have needs are those like scratching an itch, changing the TV channel, heating up his tea, things that we all do without thinking and that come at random times throughout the day. If a person is in a long term care facility, the nice-to-have needs go unmet. Someone comes to help you out at intervals throughout the day and don’t come back usually unless you call for them. For the nice-to-have needs, most of the time patients don’t call out because they know it’s an inconvenience and frankly, the caregivers don’t really have time to do those when caring for so many people. That’s one reason why most people prefer to remain at home, if at all possible, if they need physical care assistance.
As you can image, care in a long-term care facility is very expensive. Did you know it is also not generally paid for by insurance or Medicare? Most people think it is because so many people end up in nursing homes who do not have families to care for them but that’s because they have medical conditions that can lead to their death if they don’t receive skilled care or they are there using their social security to pay for their room and board (which you can imagine doesn’t pay for much).
Social security benefits may also be available to help provide income that could be used to pay for assistance at home but not if you have many resources available to you. When determining Social Security benefit eligibility, they do not consider the home/land where you live, your life insurance policy, your car, and burial plots. Other than those items, if you have more than $2,000 to your name or a couple has more than $3,000 worth of saving or assets, then the couple does not quality for assistance. One of our children is having a difficult time accepting that. This is very normal and to be expected. I don’t fault him for it and I hope you don’t either. He’s concerned that now that he’s married, has a challenging career, and is planning to start a family, he really won't have time to assist us if I can’t care for Lynn in the future (I’ve had several emergency room visits this year and the fact that I can’t always be relied upon to care for Lynn is weighing heavily on his mind.) He has challenged me to look for other options to provide for Lynn’s care if he cannot help out; and he’s correct, I do need to have a back-up plan if I cannot care for Lynn. However, that is not easy to identify.
I’ve done some checking to figure out what I might use as a back-up plan if I am unable to provide for Lynn’s care – after all; I’m approaching 60 years old, the arthritis in my hands and wrist has become very painful and prevents my having good grasp ability and I have a mysterious periodic abdominal pain problem (abdominal migraines) that incapacitates me for several hours. The fact is that someone has to care for Lynn while I’m out of commission. If no one comes, he cannot eat, empty his bladder, have a bowel movement, or hydrate himself. In a matter of hours he would be critical from his bladder not being able to empty without a catheter in place. So if I were to become unconscious and he called for an ambulance for me, what would happen to him? Would the ambulance take me away and leave him behind if no one was available? I know my daughter would do what she could to come over but she has a special needs kid that is frequently hospitalized so she might not be available. My other son knows nothing about Lynn’s care but he would come stay with him till help could come if Lynn’s son was not available. My back up had always been his son but now that option may not be reliable; therefore, what is my plan?
I figure if I’m being taken away by ambulance that Lynn will use his emergency alert button to call for help. He can ask them to make calls for him to get someone here. First would be our children, but if none of them could come, he would call various other family and friends till someone could come here to stay with him. If I don’t suddenly become unconscious, I will put in an indwelling catheter into Lynn’s bladder before I am taken away (rescue squads won’t do this to bystanders). If I’m unconscious, then whom ever comes to stay with him will have to pack him up to go to the hospital to have a catheter inserted. There are no emergency services for that type of care that can be called.
I’ve looked into hiring a nursing assistant to come help me out four hours a day seven days a week. The estimated cost is $18.50/hour. That’s $518 per week if I use one seven days a week and $370/week if I just use someone five days a week. If I was unavailable, we would need seven days so that’s $2,072 per week-not covered by insurance. Wait, there’s a catch. The nursing assistant can’t give medications so since we have to use suppositories for his bowel regiment, we can’t use a nursing assistant. There is a four hour minimum for any home health assistance so while I don’t know for sure how much it would cost for an LPN, I expect it would be at least $25/hr. if not more so that would be $700/wk. and $2,800/mth. Again, not paid by insurance. That’s $33,600 per year for four hours a day seven days a week. That’s relying on me to do the other 20 hours per day. If I had someone 24/7/365, then that’s $219,000 per year. Hmmmm, that’s more than my annual salary by quite a bit. Therefore, full time care is not an option obviously. Even if we had a Nursing Assistant 20 hours and the LPN for 4, that’s $171,550; still not an option and heaven have mercy if I had to use an RN. So my only solution is not to get sick and to rely on the help of family and friends if I do.
I’ve also been told I could spend down our assets and then become eligible for assistance. True. I would have to spend down everything I planned to live on myself and stop working so my lifestyle would significantly change. The money I have now to buy supplements for his diet and to make sure he has comfort needs and supplemental care items would all have to be given up. I could spend down everything so I could get care assistance for him but nothing would be left over for me in my old age.
So this is very depressing and there is not a solution that is better than what I do now. I have to just pray I’ll be able to hold out as long as I can and that my health will remain intact for as long as he lives. Once he dies, if I become disabled, I can be put in a nursing home (I have long term care insurance but he already had MS when it became available so he did not qualify). If I die before him (at least if I die while I’m still working) then I have a lot of life insurance and he should be okay for a while. I don’t expect he will live long after I die anyway realistically because no one else caring for him would give him the attention I do and he would just give up and die, I expect. This is a hard fact to accept, but the fact is, that as long as a person makes a good salary, saves for a rainy day, and plans for retirement, there are not options available to help him/or if they become disabled early. That’s just the way it is. Sorry I can’t paint a happier picture.
Have you ever experienced any of the following financial struggles due to your MS?