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Caregiving for in-Laws with Alzheimer's

Discussion in 'Relationship With In-Laws' started by papoosh, Feb 1, 2016.

  1. papoosh

    papoosh Bronze IL'ite

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    Hi,

    First, our situation at home. We've been married for 6 years, have a 3 year old son and live with my FIL and dog. About 2 years ago, my FIL fell seriously ill and got diagnosed with Alzheimer's disease as well. As of today, we need full time nursing help at home so he can be taken care of.

    I'm writing this post to get an understanding of how people in a similar situation especially in India manage. Alzheimer's was a disease you only heard about but having it happen at home has opened my eyes to a lot of truths, some of which are quite uncomfortable to deal with ...especially when you realise them about yourself.
    I feel terrible watching a man who was independent now relegated to doing not much more than watch tv all day and wait for his grandson to play with. As a disease, while it has impacted him, he still remains sharp and likes keeping up to date on the news etc.

    Having said that, our lives now completely revolve around first ensuring he is happy- food/company/outing wise..then ensuring our son is well taken care of..leaving us no time/space to care for ourselves at all. The nursing attendent does help, but for my FIL having someone at home cater to his needs means she is always at his beck and call...tiring the nurse out and leaving us with a constant churn of nurses..which not only upsets our daily life, but also him as he keeps needing to get used to a new person. In addition, the constant change has taken a toll on my toddler as well.

    To add, my FIL's memory is not as steeply declined as they typically portray, especially on a day to day basis, however, he is unwell enough to not be able to function independently - will not remember to switch off gas/doesn't remember things told to him etc. Behaviourally, though, there has been a vast change in him...both as a function of the disease and as a result of the increasing lack of independence.

    Over the last 3 years of caring for him, I have realised that caring for aged parents is as difficult or more at times, than caring for a toddler. Not only do you have to parent a parent, you have to deal with being called ungrateful and selfish too, because they cannot do whatever they want to.

    Now I wonder if a home for the elderly would be a good option...not just for me but for him too. These are why I think ageing in a home, when the alzheimer's isn't as advanced will be good for him:

    a) Access to a social circle. Since he is close to 80, with both my husband and I being pulled in multiple directions, the only social interaction he gets is with the maids/nurses, my son or random strangers he meets when we take him out usually once a week to a restaurant or a movie.

    b) A place geared to take care of others in a similar situation and therefore better equipped caregivers. My husband works long hours and when he is home, he is torn between catching up with dad, wife and son. Add to that the fact that dad is really unhappy with life right now. Add to that, the fact that we are not trained caregivers, I am aware that we might not be caring for him as well as someone else could.

    c) Bulding better relations all around. Right now, the situation at home is such that everything is a tussle..from what he needs to eat to how much, If we don't monitor constantly, he will hold food in his mouth and spit it out when no one's watching. He will hide medication that is given to him unless we personally put it in his mouth and ensure it is swallowed. He has no sense of personal space and will suddenly untie and retie his lungi anywhere. All this plus a stubborn disposition meaning only a scolding gets anything done. Rinse, repeat everyday. In the middle of all this, we (mostly me) end up being the strict parents ensuring discipline resulting in a miserable FIL who keeps thinking abouthow unfair we are being to him. Add to this, my 3 yo observing and learning the way to treat elder people..no matter what we teach him. I feel putting him at a distance where we will see him regularly, not a authority figures, but as family, will not only ensure his well being physically, but also emotionally. Plus my child will learn better ways to engage with him.

    d) Lastly, it will give us much respite as a family. We have struggled with caring for 2 toddlers at different ends of the age spectrum and ended up not doing justice to either. Our outings as a family are so centered around what my FIL will be able to manage, that we don't have a mental/emotional space or energy to creating such spaces for our child. Thankfully, he is a very happy go lucky child, but I wonder how long will he do without..and more importantly should he have to at all.

    We have thought of cons as well..but the biggest factor is my husband's fear that he is palming off his father for his selfish reasons. I disagree with that thought because I think it's like the decision to put a child in school/hostel. The child may not always like it, but we do it for their well being..and I truly think my FIL deserves better after all the years he spent giving my husband a good upbringing and life than an unhappy home and a place where he is looked after physically but we are unable to provide him with so much more that he needs.

    Any thoughts from any of you, espcecially people living with Alzheimer's patients at home will be welcome.

    Thanks for reading...
     
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  2. Reesha

    Reesha Silver IL'ite

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    oh...dear OP, i can understand you. Personally i regret for your situation as a woman. But still what ever you said is depends on patience level of you. At old age they are like 1 yr old childs & want for persons beside them. If mom left child for 1 min also, they will cry even though they dont have need of her because kid feel comfort with mom. like that elder people need a person with them because they feel insecure & looking for comfort feel. in case f child hat we will do is diversion to grab our personal time like giving toy.snacks to him. why not you try same for your FIL...daily so u may get some personal time. just try to work on it...
     
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  3. shobhamma

    shobhamma Gold IL'ite

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    First of all accept my Blessings and best wishes for yourself and your family. You are a genuinely compassionate and caring person . Most people crib about such a situation and look for ways to get out.

    Anyway what you want is practical advise. I do not have personal experience , but I am associated with ARDSI. This is an organization for Alzheimer and related disorders which you can join, you will get many tips and support there.

    It is ARDESI or
    [TABLE="width: 97%, align: center"]
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    ALZHEIMER'S AND RELATED DISORDERS SOCIETY OF INDIA


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    Alzheimer’s and Related disorders Society of India (ARDSI)

    Now in a lot of places they have day care centres for patients where a person ls left during the day and is taken care of by competent staff. That is extremely helpful for a situation like yours. I see that you are located in Bangalore . The following centre is mentioned there. you can contact them.

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    [TD="class: insidematter, align: left"]Nightingales Medical Trust,#337
    ,2nd Cross,1st Block,R.T Nagar,Bangalore-560032
    Phone 080-2354-844

    There is another organization Silver Innings
    Silver Innings Group

    This also you can join.

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    [TD="align: left"][TABLE="width: 100%"]
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    [TD="align: left"][FONT=Arial, Helvetica, sans-serif]And do not feel guilty when you seek help or send him out for sometime. It is of utmost importance that the caregivers are in good health both physically and mentally. I know dealing with such a patient with two kids is exhausting.

    Do not be afraid of disciplining him as they lose all sense of decorum and cleanliness. He may also complain to others that you are not treating him well or are starving/ poisoning him. That is most hurtful but happens.

    You need more support to support him. Do join ARDSI pronto and I am sure you will get support from other like families. There are many resources created when you join hands.

    All the best
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  4. papoosh

    papoosh Bronze IL'ite

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    Reesha, Shobhamma, Thank you so much for responding. Reesha, he does still have a lot of his facilities intact so distracting him doesn't work and instead makes him even more upset since he perceives it to be an insult to his intelligence!

    Shobhamma, thank you so much for the various links, I will look them up. I was aware of nightingales and the day care option is definitely on my mind. The others though, I had no idea about. Thank you also for understanding.

    Anyone else in a similar position is more than welcome to share your experiences. Thank you so much.
     
  5. shobhamma

    shobhamma Gold IL'ite

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  6. satchitananda

    satchitananda Moderator Staff Member IL Hall of Fame

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    Dear Papoosh,

    Sorry to hear about your fil. These are relatively easier times when he is still aware of things. Gradually, there will be a time when he will become like an infant and everything will have to be done for him. For the present, you can consider Nightingales and go speak to their centre at Kasturinagar near NGEF. They will help with treatment to slow down the progress of the disease as well as with some kind of occupational therapy. They have a centre at Shanthi Nagar as well for day care. Eventually, when it comes to a point where he has to be physically cared for 24X7 and is not aware of anything, you might have to consider residential care. I have been through this with my mom, who was with my sister and me till we could manage. However a fall and a surgery landed her in a situation where day to day management at home was not possible. Eventually I had to get her admitted to Nightingales, where they took excellent care of her. Of course, I would go 2-4 times a week, spend a couple of hours with her every time and longer on Sundays and monitor the care that was being given - whether her clothes were washed properly otherwise bringing them home for cleaning, what she had eaten, sometimes taking her favourite food for her. They allow family to bring them food and serve it to them there. There are daily activities for the elderly both mornings as well as evenings. These help to keep them mentally and socially occupied. The caregivers were extremely caring and affectionate. They have a doctor, a physiotherapist, psychiatrist among others on board. There are two docs - day and night. So in a way there is more care they get there than we are physically capable of giving them at home. Besides, with your daily routines as well as the kid's routine, you should have time to get on with your life too. No matter what anyone says - or how guilty we feel ourselves - we need to understand that there are limitations and we are not super-humans. We can only do the best we can by providing whatever care is needed and showering them with lots of love and affection. It is no doubt an emotional roller-coaster but we need to bumble on the best we can.

    Do take care and with lots of love.
     
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