Suddenly Becoming a Caretaker, in isolation, very scared

onemoredot

Hello, I am desperate 

I recently moved from the US to Japan to help my very healthy (never been to the hospital) grandma take care of my grandfather with dementia. In my short stay here, its become pretty apparent that my grandma can not take care of him even with my help, but shes been extremely stubborn, trying to prove she can handle it all.

My grandma suddenly had a brain hemmorage and was rushed to the hospital last week.

I had to carry her from the yard into the home, and scatter around the house (borderline hoarder house) for important information, medicines, insurance card etc and it was very traumautic. This whole week has been non stop trying to figure out the logistics of the house (how to pay the utility bill, order groceries, speaking with family I dont really know etc) while having and language barrier, and being on the opposite time line from the rest of my family back in the US

I am now alone, without a car, in a very small mountain town, with my grandfather who has never been a day without my grandma and is very confused. Ive lost my voice from repeated the same answers over and over as to where my grandma is. He wants to go visit her and it's difficult for him to comprehend due to covid protocols, hospitals are not allowing visitors. He's determined to drive (i have the keys secure)

a doctor visits once a month. My grandma had a care manager come, but stopped as my grandpa always acts out, yells, refuses when the manager tries to get him to bathe, change clothes, cut his toenails etc. 

He goes to the bathroom on his own, but struggles to wipe, causing him to smear everything on his clothes. Yet its difficult to get him to change clothes. 

I am afraid to demand, or yell, for him to do it as I cant afford to have him see me as a threat/enemy. My family here wants to send him to a short care, but my grandma doesn't want that, and he has a history of trying to escape facilities, and covid impacts visitation.

Im unsure what I need. I need some validation, some advice. My biggest issue is getting him to feel like he wants to change clothes, wipe better, bathe etc. 

Also is repeated answering of questions helpful or not.

Haven't slept much in the past week. I am an naturally anxious person, and am starting to doubt my capabilities of handling things for possibly another month or more.

thank you for reading

May flowers

Welcome, onemoredot, sorry for the reason you are here. You have a lot on your plate, I can imagine being completely overwhelmed! And being in a foreign county to boot, it must be so difficult.

For the toileting, some people here have recommended a bidet on the toilet - if you think he will be willing to use it. 

For his behaviors, does he have a doctor who might be willing to prescribe meds for him? They might be able to do a telehealth appt if he is resistant to going. We have to use medication to sedate my FIL a bit so we can clean and change him in the mornings. Something like that might make it so that a caregiver would be able to work with him too.

As for the questions, there is no use trying to explain. They forget or cannot process it anyway. Our go-to answer is “he/she is at the store and will be back soon” and quickly redirect with an activity or food he likes. Fussing and reasoning doesn’t work, it just escalates agitation.

As for here on out - hopefully another family member had DPOA (or the Japanese equivalent), and can get control of the finances so that if anything happens to your grandma. We put my LOs bills online which made it easier for my MIL (one less thing for her to have to deal with) and made it easier for us when she passed to continue managing the bills. 

Again sorry for your struggles (prayers)

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Ed1937

You sure do have a full plate, and I'm sorry for that. Do you have family nearby who can help with the language barrier?

I agree with Victoria on the short term care. If that's something you can get right away, that sounds like the best you can do for him.

"I am afraid to demand, or yell, for him to do it as I cant afford to have him see me as a threat/enemy. " You know him better than anyone here. Is he able to understand what you ask him to do? If the short term care is for whatever reason not available, do not yell at him or let him think you are not on his side. Tell him you love him, and you know this is very hard for him. Tell him it's OK, and you'll work together on this. Keep repeating that it's all right, and keep your voice pleasing and comforting. You are working as a team. Then tell him what needs to be done, and ask if you can help. Above all show empathy. Do not demand or yell, even though that might be hard to do. Best of luck to you. This strategy worked well with my wife.

Jo C.

Hello and a very warm welcome to you, onemoredot.  I am so very sorry for what is happening and can well understand the stunning situtation you find yourself in.  To be scared under such overwhelming circumstances is certainly normal.  You are very aware that things cannot continue as they are; it is about 24 hour care in an appropriate setting.  It is not just about "wiping himself," or gaining his cooperation which is unlikely, or other small chores, but the overall 24 needs which encompasses so much. Are there close relatives nearby in Japan?  If so, are they not willing to step in more actively and assist in the future plans which needs to be done? 

You are doing your very best under the circumstances with the challenges at hand with so many issues not of your making and that are resistant to change.

There will be helpful assistance to be found, but it will undoubtedly require some changes that your grandmother may feel she does not wish to make, but there is no recourse.   Your grandmother's plan is not at all doable and definitely not sustainable. Safe, secure, adequate 24 hour care and sustainability are the key issues.  Your grandfather's dementia will continue to decline requiring a heavier and heavier level of care.

Who at home in the U.S. is the closest one to the grandparents in relationship that has had contact with them?  Do they fully understand the circumstances?   If it is your parents or other close relatives, then it is time to let them know the severity of the situation and that changes that have become necessary despite grandmother's unrealistic resistance .  NOTE:  The state of the house also indicates that even before your grandmother sustained a brain bleed, she was not able to cope with all that was present - she too was failing in her capabilities.  Both of them have present and future needs that cannot be achieved alone in their home and I am assuming you wish to return to the States.

The sad fact of this, is that your grandmother may not be able to come home, and if she is able, the fact is in all probability, she may need 24 hour care of her own into the future.  Question:  What disabilities have occurred with the brain bleed and what status is she now at?

It is evident that your grandfather's dementia has advanced and reached a point at which he is not going to be able to live alone at all even with a part time help, which of course is why you are there.  At any point, did you come to realize that your grandmother may never again be able to care for your grandfather at all or even if improving, to the level her husband needs and will continue to need as he declines further and further?

At this point in time, do not argue with your grandfather and try to speak logic with him; his brain is damaged and he no longer can process logic or reasoning.  Try to have a kindly presence with him - but do know even if you do, he may rail against you - that is quite common in dementia.

The best thing  you can do is to be wise and realistic and to get him into a care facility setting as some family has suggested. Do NOT try to ask for his permission or to discuss it with him.  He will not process that  and he will only refuse and act out. He must be safe and secure and that setting will be able to do that.  Accommodations can be made for wanderers.  Your grandmother was not being realistic as much as she wishes to return home and pick up his full care again; and the house as it is presently indicates how bad things were actually going for the two of them.  It is a sad situation, but one in which someone must be the one to ensure safety and adequate care will be in place.

When grandfather is in a safe place that can meet his 24 hour needs, then it is time to speak to whatever person makes plans for discharge at your grandmother's hospital.  Social Worker or other type of manager.  BOTH of your grandparents need to go into safe care.  Let the discharge planner person know you must return to the U.S. and there will be no one in  the home for care and that care is needed 24 hours due to advancing dementia.   As we do not know the outcome of your grandmother's capabilities with the brain bleed, I cannot address that.

Once you have the grandparents in a safe and secure setting, then family can begin to make plans as to where to have them cared for on a permanent basis; hopefully in a setting where they can see one another at least from time to time.

There will be no easy answers to this, just the best that can be done considering the challenges. It is sad, and I am sorry for such strict sounding news.   However; those relatives that recommended Grandfather go into care are in all probability, quite correct.

Do let us know how you are doing and how things are going; we will be thinking of you and we truly do care.  We are all here in support of one another and that includes you too!

With best wishes being sent your way,

J.

Jo C.

I am sorry dot; my response was not as helpful as could be.  Perhaps some thoughts . . .

1.  Most important is to find out what  condition of your grandmother is in, what deficits she may have secondary to her brain bleed and the type of care she will need going forward.  Is she recovering OR is she experiencing significant changes in her consciousness and/or in various abilities of function?

2.  Language seems to be a problem with being able to have detailed conversation. Perhaps there will be a bilingual person proficient in both English and Japanese that could assist you as you communicate with the hospital staff, doctors and social workers or whoever coordinates discharge planning from the hospital your grandmother is in.

3. If your grandmother has deficits secondary to the brain bleed . . . does she have consciousness, what is her ability to think like; does she have any paralysis or damage to any of her limbs that hinder her ability to use her arms/hands; legs; does she have the ability to speak, etc.?   This is all important for future planning.

4.   Speaking to the doctors; the RNs caring for your grandmother; any physical therapist working with your grandmother can all give you a detailed report on what her situation is like now and what the future will probably be for her.

5.  Important:  Speaking to a Social Worker or whatever name the discharge planner is called will give you the best assistance on what care facilitiese are available in the area as that is going to undoubtedly be part of planning consideration.

6.  Use that Social Worker to obtain best information as it would pertain to BOTH grandparents; the one in the hospital, and the one at home.

7.  If grandmother cannot return home, what care facilities are available to best serve her and also serve your grandfather?  It may be that IF your grandmother's ability to think and recall and still communicate, if both grandparents are placed in the same care facility setting, she can still feel she is "taking care" of her husband by being able to see him and he will be able to feel he is visiting with her.

8.  If that level of consciousness is there after the brain bleed and both grandparents are in care together or very near one another in the same care setting, then this keeps them both safe, secure, cared for, it keeps them socialized with others, there will be activities and their hygiene, toileting,washing, meals, everything will be able to be managed for them.

They can have comfort items from home in their rooms to feel more "homey."  Favorite bedspreads or afghans, pictures, a piece of furniture if it is allowed, etc.

9. IF the family insists on sending grandmother home IF this is doable, then the need may be for hiring a person for 24 hour care, seven days a week.  If this is done, it will also take a family member who lives in Japan to take the oversight management of this care person and the situation in the home. It also costs money to do hire such a person, so that too is a consideration.

10.  Using the social work person both at the hospital and if there is such a person for the elderly living in their homes, and using the relative who bests understands all of the problem issues will most likely be able to help coordinate and plan for all the necessities.

11. You are going to be coming home to the states within a month.  If this were me, I would stick to that time frame when speaking to the other relatives.  It does not sound as though they are stepping up to be of help, and if you wish to return to the states soon, it would be best to not be manipulated into staying on and on and on.   The goal would be to have the grandparents in the best care setting where they can see one another in one way or another in the same building.  

12.   It is sad and you are trying very hard to do the right thing; you are a blessing to your grandparents and so far from home.  Your grandfather's dementia will, as already said, only get worse and he will decline more.  From what you have written about your grandmother's unrealistic expectations and the condition of the house prior to her brain bleed, it is possibl that she too may have been having early changes in her own cognition and may have been slowly developing her own dementia.  That is something to take into consideration as a possibility.

13.  Please let us know how your grandmother is doing, and how you are doing, I send you warmest thoughts and best wishes for the strength to make the plans for the future care needs of both grandparents with input from the professionals as well as family.  It is a different culture with perhaps different values, so that too may be part of it all.   May this all begin to come together and give you some relief. You have been doing your very best.

J.

ZackFootInMouth

I apologize I can't offer much advice, but I can sympathize. Living with someone you can't really admonish for being who they have become is... There's no way to deal with it.

Make time to take care of yourself to minimally cover sleep and food. You will have to force yourself to rest and just accept that any problems that occur while you sleep will be dealt with after you recover.

I do have experience with smeared clothes. My father in his later years would have no bowel control. I bought him several "disposable" clothes (cheap, simply colored); he didn't like their look, but they were loose fitting and easy to put on and take off. And I bought ten sets, so I or his spouse would have a set for him to quick change into (and they would be rags for wiping his bathroom trips). Every few weeks I would buy more because after daily washing, they became very thin and torn. I simply accepted their cost as a cost of his aging process.