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消え行く父に、私は何ができるでしょうか?
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What can I do about my vanishing father? |
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私は、東京近郊に夫と3歳の娘と暮らしている専業主婦です。私の両親は東京のずっと北側の東北地方に住んでいますが、ここ数年、父の記憶力はどんどん衰え、最近アルツハイマーと診断されました。父は3年前に私の家に来たことがあるのですが、そのとき近所を散歩していて迷子になってしまいました。この夏に両親の家に行ったときは、父はとても喜んで毎日孫と遊んでいたのですが、前日のことは何も思い出せなくなっていました。 母は東京近郊に引っ越したいと思っています。毎冬降り積もる雪をかくことに疲れたのと、私や私の姉の近くに住みたいのがその理由です。姉は私の隣町に夫と子どもといっしょに住んでいます。でも、父は慣れない場所へ引っ越すことを恐れています。母はいつも活動的で、友だちと外出するのが好きだったのですが、そういうこともできなくなり鬱々と過ごすようになりました。それに、母の記憶力も最近どうも心配です。 私の夫の両親も、東京から西に遠く離れたところに住んでおり、彼らは私の両親よりも年をとっています。彼らの健康もいつまで続くかわかりませんし、彼らもそのことを心配しています。夫にはひとりも兄弟がいません。 姉や私が両親を看ることになるのかも知れませんが、老人ホームなども調べてみなければと考えています。しかし私は、この状態でいったい何を優先すべきなのか、わからなくなっています。チップさんに、意見をお伺いできればと思います。 |
I am a full-time mom and live near Tokyo with my husband and our 3-year-old daughter. My parents live in the Tohoku district far north of Tokyo. Over the past few years I have observed a steady decline in my father's memory and his doctor recently confirmed that he was suffering from Alzheimer's disease. When he came to visit my house three years ago he got lost while strolling in my neighborhood. When I visited my parents' house this summer he was happy and played with my daughter every day, but was unable to remember anything from the previous day. My mother would like to move nearer to Tokyo. She is tired of shoveling heavy snow every winter and she'd like to be nearer to me and my sister, who lives in a neighboring town with her husband and their child, but my father fears moving to a strange place. My mother has always been very active and enjoyed going out with her friends, but she is no longer able to do such things and her heart is heavy. I have concerns about her memory as well. My husband's parents, who live far west of Tokyo, are older than my parents. I don't know how long they can keep their health, and they worry about this too. My husband has no brothers or sisters. It may be possible for my sister and I to care for our parents, but I'm also considering looking into alternatives such as nursing homes. I don't know what my priorities should be now and am really quite confused about it. Please tell me your opinion Chip-san. |
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認知症の現実 |
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アルツハイマー病や他の認知症は、長生きしている人に訪れる悲劇的な病だ。回復することはなく、現在のところ効果的な治療法もない。ご両親はやっと、長い間働いてきた成果を収穫し、これから余暇をゆっくり過ごそうという時期を迎えたというのに・・・。人生はこんなにも残酷になることがある。長い間かかって蓄えてきた記憶が、それを最も楽しめる時期に奪い取られたり、ほんの小さな子どもの頃から身に着けていた簡単で基本的な能力が失われたりすることほど、辛いことがあるだろうか。そして更に悪いのは、認知症の悲惨な影響は病に罹っている本人だけに終わらないということだ。その影響は周りの全ての人に及ぶ。特に、最も近い家族たちに。 私が確信を持って言えるのは、君のような状況での選択肢は3つしかないということだ。 |
Alzheimer's disease and other forms of dementia are tragic afflictions visited upon those who have lived a long life. There is no cure, and so far there is no effective treatment for it. In a just world, at this stage in their lives your parents would be reaping the fruits of a lifetime of labor and enjoying at long last some leisure time. Life can be cruel. It is difficult to think of anything more devastating than to be robbed of all the memories you've collected over a lifetime just at the point in life when you might enjoy them most, as well as losing simple, basic abilities to do things you've done since earliest childhood. Still worse than this is that the devastating effects of dementia are not limited only to the individual suffering from the disease. Everyone around the victim is also affected, particularly their closest family members. As I'm sure you know, in a situation such as yours there are really only three options. |
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ご両親だけで暮らし続けるという選択肢について |
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1つ目は、ご両親が自分たちだけで暮らし続けるという選択。君の家から遠く離れているのであれば、家に来て日常生活をサポートしてくれるヘルパーを雇うことになるだろう。もしご両親が近くに住むなら、その役割の幾分かを君やお姉さんが担うことになるかもしれない。誰かが家に居てお父さんを看ることで、お母さんに自分のしたいことをする時間が生まれる。 しかし、アルツハイマー病は進行していく病なので、状況は確実に悪くなっていく。ご両親が君やお姉さんの近くに越してきたとしても、ふたりとも子どもがいて十分な時間を介護に回すことはできない。だから、その場合でもヘルパーを雇う必要はある。 ご両親が自分たちだけで暮らすのはどんどん困難な状況になってくるし、また経済的負担もますます大きくなってくる。だからゆくゆくは、他の2つの選択肢のどちらかを選ばなくてはならなくなるだろう。 |
The first would be for your parents to continue living on their own. If they lived far from you they could hire help to come in and assist them with their daily needs, or if they moved closer you and your sister might be able to take on some of this responsibility. Simply having someone there to spend time with and keep an eye on your father would allow your mother to have some time of her own in which to pursue her own interests. However, because Alzheimer's is a progressive disease, the situation is sure to get worse. Even if your parents were to move close to you and your sister, because both of you have children of your own neither of you is likely to have the amount of time that your parents will require and it is likely that outside help will need to be hired.
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同居という選択肢について、あらゆる側面から考えてみる |
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ひとつは、君(あるいはお姉さん)との同居だ。この案が現実的である場合に限られるが・・・。最も重要なファクターは、彼らを受け入れる十分なスペースがあるかということだが、君(またはお姉さん)の家に彼らを迎える部屋がある場合も、必ず以下のことを考えてから行動に移して欲しい。 今現在はお父さんはあまり世話がかからないかもしれないが、確実に状態は悪くなってくる。アルツハイマー病の症状は人によって様々だ。お父さんは既に記憶力と、新しい環境への適応力を失い始めている。おそらく頻繁に混乱を示すようになるだろう。新しい家への移ることは、彼をより混乱させることとなる。彼はどこに居るのか理解できないかもしれないし、新しい家の構造や作法を覚えられず、十分の馴染むことはないだろう。ひょっとしたら彼は、そのうち現在住んでいる家のこともわからなくなるかもしれない。だから引越しに強く反対しているわけではない。 だが、日常的に混乱しているとアルツハイマー病患者は恐怖感を抱くようになり、この恐怖感と混乱が様々な問題行動を引き起こす。お父さんは、介護を素直に受け入れるかもしれないが、怒りや攻撃性を示すかもしれない。お父さんが勝気な性格であれば、介護を拒絶する傾向が強いだろう。また、アルツハイマー病患者には徘徊症状を示し、常時監視が必要な人もいる。 老いていくご両親には、老いていく誰もが経験する(だから苦痛ではないということではない)試練を受けることを考慮しなければいけない。例えば、失禁とか、運動機能や平衡感覚の低下とか、骨がもろくなることなどだ。だから老人と一緒に暮らす場合は、認知症である場合は特に、かなりの時間がその世話に割かれる、ということを理解しておかなければならない。そして、その負担は次第に大きくなっていく。 君と夫と子ども。今の君は素敵な核家族世帯で暮らしているわけだが、これが崩れることになる。君が最も優先すべきは、君の子どもに対する義務を果たすことだ。君に可能な最高の方法で、娘さんの必要を満たし、育てることだ。 多くの点で、祖父母と共に暮らす経験は、彼らが決して健康でなくても、娘さんにとって良い経験となるだろう。娘さんが祖父母と過ごした時間は、それ自体、何事にも代えがたいものだ。また、両親が祖父母を介護する姿を見ることは、先に生まれた人たちのために、時々負わなければならない義務について学ぶとても良い機会となる。もちろん彼女は、人には必ず死が訪れることも学ぶだろう。それから幼いながらも、命の大切さに敬意を払えるようになるのではないだろうか。 しかし、これらのことは、かなりの犠牲の上に成り立つ。老人介護はきつい仕事だ。非常に多くの時間と労力と忍耐が求められる。いつも、ご両親に労力と忍耐を注ぎ込めば、娘に注ぐ時間や労力や忍耐が削がれるかもしれない。君自身にも負担がかかるだろう。とても消耗的だし、世話をしている老人たちが正常な心を失っている場合は、感謝さえもされないだろう。介護者に要求される肉体的、精神的、心理的、そしてスピリチュアルな負担は、非常に大きい。 決して、このような仕事をひとりでやってのけようと考えてはいけない。たとえ同居していようとも、一番良いのは家まで来てくれるヘルパーの助けを借りることだ。しかし、それによって今度は、秩序を乱す他人が家にいることを受け入れねければならなくなる。老人介護を仕事にしている人たちの多くは誠実にその仕事を行っているのだが、自分なりのやり方を持っており、それを君に押し付けようとしたり、君の判断を批判したりして、更なるストレスを君に与えるだろう。それでも尚、彼らの助けの必要性を君は感じるだろう。 君のお姉さんが君を助ける気持ちをどんなに持っていようとも(お姉さんがご両親と住む場合は逆の立場)、彼女の助けが必要なときに、しばしば彼女の助けがない、という状況になってくる。最も大きな介護負担は、ご両親と住んでいる人にかかってくる。しかし私はこのことを伝えたい。君が犠牲を払ったにも関わらず結局はご両親は亡くなってしまうわけだが、君の家あるいはご両親の家での介護がどんなに困難だったとしても、自分が行ったことを後悔することはないだろう。 |
The first of these would be to have your parents live with you (or with your sister). Only you know if this is a realistic possibility. The biggest factor here is the amount of space you have available to accommodate them. If you (or your sister) have room to put them up in your home, there are some things that you should take into consideration before taking such a step. Your father may not require much in the way of care right now, but his condition is certain to get worse in time. Alzheimer's disease can affect people in a variety of ways. Your father is already showing signs of memory loss and an inability to negotiate new environments. He is probably confused much of the time. Moving into a new home is likely to increase his confusion, as he may not know where he is and will probably be unable to learn new routines or fully accustom himself to his new home. Chances are that, in time, he will no longer retain familiarity with his current home either, so this is not an argument against re-locating him. However, this sort of constant confusion can be terrifying for someone suffering from Alzheimer's disease and there are any number of ways in which he might express his terror and confusion. He may be docile and accepting of any care offered him, but he may also become angry or combative. If he is a very independent type of man he may be very resistant to care. Some Alzheimer's patients are also given to wandering and must therefore be monitored closely. Because your parents, like all of us, are aging you must also take into consideration the more mundane (but still unpleasant) afflictions of old age, e.g. incontinence, restricted mobility, loss of balance, brittle bones, etc. So you have to realize that having an elderly person living at home with you, particularly one with dementia, is going to take up a considerable portion of your time. Perhaps not at first, but eventually. Right now you are living in a nice nuclear family-type situation: just you, your husband, and your child. That arrangement will be disrupted. I think that your first priority is the obligation you owe your child to meet her needs and bring her up in the best way you are able. In many respects having her grandparents living under the same roof would be a positive experience, even if their health is in decline. The extra time your daughter would be able to spend with her grandparents would be priceless in and of itself. Seeing her parents caring for her grandparents would also provide an important lesson in the responsibility we must sometimes bear for those who came before us. Of course she would also learn about mortality and perhaps come to respect at an early age how precious life is. But all this would come at a price. Caring for the elderly is very demanding. A great deal of time, energy and patience is necessary. All the time, energy and patience that you spend on caring for your parents, may leave less time, energy and patience for you to lavish on your daughter. She may come to resent this. It can also take a toll on you. It can be exhausting and, if the elderly person in question is no longer of sound mind, thankless work. The physical, mental, psychological, and spiritual demands such work makes on the caregiver are great. It is inadvisable to try to tackle such a task completely on your own. Even if they are living in your home with you, it would probably be in your best interest to hire outside help to come in and give you some relief. But then you will have to deal with the disruptive presence of strangers in the house. Many people who make a living from caring for the elderly are genuinely caring individuals, but they also have they own way of doing things and may try to impose their methods on you and second-guess your decisions, perhaps causing further stress for you. Despite this, you are very likely to find it necessary to get help in dealing with the situation. No matter how well-intentioned your sister may be about helping you (or vice versa if your parents were to live with her), you will find that she will frequently be unavailable when you need her. Whoever your parents are actually living with will be the one to bear the greatest burden of their care. I can tell you that no matter how difficult it becomes to care for your parents, in your home or in theirs, it is unlikely that you will ever regret having done it after they're gone regardless of the sacrifices you have to make along the way. |
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介護施設への入所という選択肢について |
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もうひとつの選択肢は、君も既に考えているように、お父さんを老人ホームあるいは介護付施設に入れることだ。これを決断するのはとても難しい。私ならこのことを選択する前に、他のあらゆる可能性を探ってみるだろう。しかし、他には方法がないという場合もある。 日本の老人ホームがどんなものか私は知らないが、アメリカの老人ホームについては詳しく知っている。また、国によってそうは違わないのではないかと思う。老人ホームのプラス面は、入所者には常に目が配られていることと、スタッフの中に医師がいることだ。しかし、こういう施設で働く准看護師の多くが、老人に献身的な介護を提供しようとしている一方で、彼らは低賃金と長時間労働の被害者となっている。お父さんは介護を受けることができるが、家と同様の介護は受けることができない。 自分が誰なのかや、どこに居るのかさえわからなくなるまでお父さんの症状が進行すると、彼には自分の家に居るのかどうかはわからないだろう。しかし、そうなる以前に場所を移されると、それが彼にとってトラウマとなる。老人ホームに入った途端に健康状態が悪化していくケースがよくあるが、その原因は、スタッフの無関心やずさんな医療にあるのではない。入所者が鬱となり自暴自棄になってしまうからなのだ。しかし、お父さんは君の負担になる(と感じる)よりも老人ホームへの入所を希望するというケースもありえる。 |
The other option is, as you are already considering, to move your father into a nursing home or some kind of assisted living facility. This is always a very difficult decision to make. Personally I would explore all other possibilities prior to choosing this, but sometimes there is no other realistic option. I don't know what nursing homes are like in Japan, but I do have a pretty good idea of what they are like in the U.S. and I can't imagine that they are much different anywhere else. On the plus side, there will always be someone around to keep an eye on the residents and there will be skilled medical practitioners on staff. However, while many of the nursing assistants that staff these facilities are truly devoted to providing good care to the elderly, they are also usually underpaid and overworked. Your father will be cared for, but will not receive the same quality of care as he would at home. If the disease has progressed to the point that your father no longer knows who he is or where he is, then he may not be aware of his situation if he is in a home. However, until he reaches that point such a move could be traumatic for him. It is often the case that once a person enters a nursing home their health actually declines, not due to inattention on the part of the staff or poor medical care but because they become depressed and no longer care what happens to them. It may also be the case that your father would rather go into a home than become (what he perceives as) a burden to you. |
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君に伝えておきたいこと
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この状況をどうするかを決定できるのは、君と君の家族だけだ。ただ、アルツハイマー病について十分に調べ、どんな介護があるのかを可能な限り見つけて欲しい、ということは言っておきたい。親や健康状態に苦しむ人たちの世話をすることはとても大切なことだと私は思う。しかし、そのことによって、自分たちや、子どもたちなど大切な家族の幸福を犠牲にすることは大抵間違っている。あらゆる事実を検証し、娘さんの役割を考え、夫やこのことが影響する人たちと、問題点について十分に話し合おう。そして最後は、君の愛情に行動を決めさせよう。 君のお父さんにはとても同情する。また君の状況もよくわかる。君がどういう選択をするかに関わらず、君は君の中にある強さと忍耐を呼び覚ましながら、何とか切り抜けていくことを願っている。強さと忍耐の両方が、君には必要となるだろう。 |
Ultimately only you and your family can decide how to deal with this situation. I would suggest you read up on Alzheimer's disease and find out as much as you can about what sort of care is available. I think it is very important to look after our parents and other loved ones with health problems, but it is usually a mistake to sacrifice the well-being of ourselves and other vulnerable members of the family, such as our children, in order to do so. Learn all the facts, consider your daughter's role, and discuss the matter thoroughly with your husband and other affected family members. Let love motivate your actions. I sympathize with your father and empathize with your situation. I sincerely hope you will be able to summon up the strength and patience that you will need to deal with this no matter what choice you make. You will need a great deal of both. |
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