A question for dementia caregivers

[AmandaSingleton]

Is there anything you wish your care partner had done to prepare themselves and you, as the caregiver, for their time with dementia?  What could have gone differently or made life easier as their symptoms progressed? 

Thank you all for your insight and input! 

Amanda

[JaneCares]

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@AmandaSingleton wrote:

Is there anything you wish your care partner had done to prepare themselves and you, as the caregiver, for their time with dementia?  What could have gone differently or made life easier as their symptoms progressed? 

Thank you all for your insight and input! 

Amanda

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Well, at the moment, I'm not a caregiver, but i have been a few times and i'm sure i will be again. And there's one thing i want to make VERY clear to my future caregivers: I do not want a feeding tube, thank you very much. Nosireee. If i can't swallow safely on my own, i want a speech therapist to inform all of us of what is safe, and let's do that so i can drink or eat or have thickener by mouth. and once that doesn't work, that's it. no more food for me. Keep me comfortable, wet my mouth with those toothette things, and let me get skinny one last time. (It's been ages since i even had a WAIST.)  Hospice time.  B'bye. It's been lovely. Let me die.  Thanks ever so much. Good job!! Many thanks!!! Make sure Clara gets my journals, and Jonah gets my DVD: they can split the yarn.

Jane

[GailL1]

This may not be what you wanted but is a good discussion topic -

They (the caregiver and/or those with power over health) should understand the complete wishes of the patient - not just those with dementia.

They should do everything in their power, including fighting any legal battles, to adhere to these wishes - no ifs, ands, or buts.

KHN 08/17/2017 - Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse

KHN 10/12/2017 - Dementia Patient At Center of Spoon-Feeding Controversy Dies

The "Right to Choose" in this respect is paramount.  Laws in EVERY state should be changed to adhere to these wishes - legally documented when a person is of sound mind.

Even our "Right To Die" state laws are missing this important advanced planning. 

When my QUALITY of life as I see it is over - why should anybody else make this decision for me.

[cj30564300]

Should an patient who has stated they want to remain in their own home be allowed to live with mice droppings/urine, gnats in the fridge, inadequate nutrition due to their not eating/cooking, soiled carpet that the MD has stated is a fall hazard, if it's their stated desire to do so? If they don't see the mice droppings, don't notice the gnats, don't feel hungry and think the carpet is fine, and they can keep from falling if they remember not to try to hurry to answer the phone. Is this OK because they are happy where they are?

My other question is: are there any stats on what percentage of dementia patients decline at a more rapid rate (to the point of non recognition of immediate family within the first year of new residency) when they are moved from their familiar surroundings into a care facility. And is the act of moving into a facility the cause of the decline? 

If so could the decline be caused by a combination of events: less visits by family and friends, less social interaction, lack of intellectual and emotional stimulation like music, pets, children, reading material, visual phone conversations, shopping... any number of things.

Would moving into the home of a child while being able to take with more of familiar, comforting belongings prevent such a decline while providing health and safety?

[GailL1]

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@cj30564300 wrote:

Should an patient who has stated they want to remain in their own home . . . . . . 

Is this OK because they are happy where they are?

My other question is: are there any stats on what percentage of dementia patients decline at a more rapid rate (to the point of non recognition of immediate family within the first year of new residency) when they are moved from their familiar surroundings into a care facility. And is the act of moving into a facility the cause of the decline? 

If so could the decline be caused by a combination of events: less visits by family and friends, less social interaction, lack of intellectual and emotional stimulation like music, pets, children, reading material, visual phone conversations, shopping... any number of things.

Would moving into the home of a child while being able to take with more of familiar, comforting belongings prevent such a decline while providing health and safety?

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No matter their wishes . . . . they cannot live in an unsafe and unhealthy environment but that's where (family) caregivers come in - care is then needed, a little or a lot, depending upon their condition and situation.

Whomever lives in a home, there are things that have to be done just to keep the place livable - upkeep, cleanliness, maintenance - these things don't stop when the person living there can no longer handle these matters. So choices have to be made - these choices have to consider a combination of factors - the health of the person living there, their ability to (personally) care for themselves, their ability to keep up the home by either hiring it out or letting someone else handle such affairs, then there is the financial capabilities to handle added expenses of a caregiver to handle not just the direct care giving but those other matters cause they all have to be done.

I don't know any stats on the affects of changing residences when health conditions warrant a change for care purposes.  What does it matter, if the person cannot care for themselves and their surroundings any longer living alone and cannot afford (or others helping to afford) to bring in outside help to handle those things that just have to be done - whether of a personal nature or ones for the residence.  At this point, there seems to be no choice.

Social interaction does affect a person's psychic wellbeing but the amount and type is relative to the person and pretty much to their condition.

As far as moving in with a child - all of this needs to be discussed beforehand if all possible - there needs to be a plan and if another person (family caregiver - child, alone or with their family) is involved, their life too has to be also considered.

Whatever the happening, whatever the remedy, the person needing the care or help is gotta have some shock.  It may take some time to adjust - they may never adjust. 

As a (family) caregiver, you aim to help but that help is not unlimited or not without considerations - there maybe time and money constraints, there maybe other responsibilities which also have to be handle, the care may become more than the (family) caregiver can handle effectively or they may just not want to do it;

Any person can make plans for themselves as to what they would like to happen - but that plan has to have some basis in being feasible.  If another person is involved in the plan, that person also have to have some say in the matter.  Of course, the plan is also up for change because life does not always follow an exact course.