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Home care vs. Nursing Home

  • By mario lobo

    I’ve been caring for my wife at home for many years, during which time her MS has progressed and her level of disability, both physical and cognitive, has increased. She was diagnosed in 1985, but managed to live a relatively normal, independent life until around the year 2000. Since then it’s been a struggle and I do my best to make it all work. She now gets around only using a wheelchair and struggles with making transfers independently and has falls from time to time, none of which have resulted in any injuries worse than bruises. I’ve made many safety and accessibility modifications to the house. I work full time. We have in-house help and/or visitors for about 8 hours a day.
    Yet, I know, that as her disability worsens, there will come a point when her living at home will no longer be a safe or feasible option. The problem is, as the old saying goes, you can’t see the forest through the trees. I’m so close to the situation, and it evolves and deteriorates so gradually, I don’t know if I’m really equipped to make the decision to change her living situation on my own. Will I be too late, and something horrible happens to her while she’s at home? Will I be too early, and will she ending up living in a nursing home for a long time when she could have been perfectly OK at home?
    So I’m reaching out to you all, the community of care givers, as to how you’ve made those kinds of decisions. Have there been professionals who’ve helped you in this process? Neurologists, social workers, some other kind of professional or specialist?
    Please share your thoughts about this.
    Thanks.
    Mario

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  • By Erin Rush Moderator

    Hi Mario!

    I do hope you get some feedback from our members! If you haven’t already, you can read through our caregiver forums for some ideas.

    Also, this is such an individual decision that has to take so many factors into account — not just your wife’s health, but YOUR health, YOUR support system, your long term disability/care insurance, etc. Definitely bringing her physicians into the discussion a s a great idea. Since you are aware that you are too close to the situation, you may need to rely on the input of others that have some knowledge of your situation, but without the emotional attachment that you genuinely feel. That sounds awfully cold and clinical, but I think you are wise to realize that you may need some advice as time goes on.

    You may want to check out the Caregiver Action Network (CAN) community for some input — http://www.caregiveraction.org/community. Also, disAbilityNavigator might have some good information — http://disabilitynavigator.org/. You can also contact an MSNavigator through the National Multiple Sclerosis Society — https://www.nationalmssociety.org/Living-Well-With-MS/Relationships/Family-Matters#section-3.

    One of our contributors, Donna Steigleder, has written extensively about being a caregiver for her husband, Lynn. You can learn more about her here, as well as find a link for all of her articles — https://multiplesclerosis.net/community/experts/donna-steigleder/.

    All of these resources may help you figure out a game plan for the future. I also hope you get some community input that you find helpful!

    Good luck and don’t forget to do your best to take care of yourself as well.

    Best, Erin, MultipleSclerosis.net Team Member.

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  • By mario lobo

    Erin,
    As always, your reply was thoughtful and complete.
    My take away from your comments is that , to the best of your knowledge, there is
    no fixed protocol, no one specific type of “go to” professional, who typically assists a caregiver to make this type of decision.
    I realize that in some cases this decision kind of makes itself, when it becomes
    completely impossible for someone to stay at home. Yet I’m guessing I’m not the only
    one in a situation that’s more of a gray area, where once just doesn’t, and can’t, know what the right thing to do is, and when is the right time to do it.
    I’ve already been looking at the resources you mentioned, with the execption of disAbilityNavigator,
    which I will surely investigate on your recommendation.
    Thanks very much.
    Mario.

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  • By Erin Rush Moderator

    Thanks for your reply, Mario! I think your summed up my post really well.

    Unfortunately, when it comes to care decisions, MS is STILL a snowflake disease, even in this aspect. There is no checklist to go through that will help one decide that it’s time to make a move to a nursing home. Some people choose to keep their loved ones home until the very end, while others decide that when 24 hour monitoring is necessary or home health aids are not working, that the time has come to move to a facility. It’s really such an individual decision. And, of course, finances and the health of the caregiver matter, too.

    I know this is a very, very difficult decision to make, when the time comes. Whatever path you choose, I hope you have peace in the knowledge that you have done the very best for your wife.

    Take care!

    Best, Erin, MultipleSclerosis.net Team Member.

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  • By rolly

    Hi Mario

    I don’t know whether it’s appropriate for me to comment here in the caregivers forum, as in our situation I’m the one with MS and my wife is my caregiver. Let me say first up that I admire the work that all you caregivers do!

    You raise some very relevant questions, and they are questions that are also increasingly on our minds, but without the right answer so far.

    I’ve had MS for 23 years. The first 10 were good. Then I started having frequent flare-ups with increasing disability, and 6 years ago this month I was told that it had progressed to SPMS. From there things quickly went downhill, to the point where I now have to rely on a power wheelchair fulltime and can no longer transfer myself (we have a ceiling lift to transfer me in and out of bed). My left hand and arm are useless, and my right are getting weaker, so that I need help with all personal care and also increasingly with eating. Spasticity and pain are a big problem. Cognitive ability has deteriorated as well, but to a much lesser extent than the physical ones, which is certainly a blessing.

    Last year I had to spend several weeks in hospital and then rehab, and it was at that point that the word “care faciltiy” (i.e. nursing home) was mentioned by a doctor for the first time, which quite frankly left us shellshocked!

    My wife still works (though with reduced hours), and at the time I was basically on my own during the day when she was at work. The doctor felt we should seriously consider a care facility rather sooner than later, so that I could get the best possible care.

    I’m 49, and the sheer thought of it sent me into deep depression. My wife would have none of that and categorically rejected the idea, but as horrible as the thought seemed to me, I started wondering whether I was demanding too much of my wife by staying at home, feeling guilty.

    Eventually we found a solution that works for now, with a carer coming in twice during the day, and with a good friend and next-door neighbour (who works from home) on standby for emergencies, should it become necessary. It’s an arrangement that works well enough, and that the doctors also agreed to, providing that I go into respite care at least once a year, to take some pressure off my wife, which I understand.

    But I’m progressing, and it’s just a matter of time until I will need 24/7 care, which I cannot get at home. So the prospect of a nursing home is consantly hanging over me.

    So, while I cannot provide you the right answer (and as Erin mentioned, this is a very individual decision, and there is no blue print for how to handle this), at least you can see that you’re certainly not the only one struggling with this decision.

    I hope you will find the right timing to make this very painful decision. I wish you strength!

    Rolly

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  • By mario lobo

    Rolly,
    Thank you for the very thoughtful response. I really appreciate your putting yourself out there!
    I realize that deciding when to make that transition is a very personal, individual decision.
    I guess the advice that I was seeking was
    not “when is the right time?” but rather, “what kind of professional (doctor, social worker, other type of professional) can guide one through the process of making that decision?”
    Again, I appreciate your response!
    Mario

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