At Saturday's support group we discussed different issues which had arisen in the past month with those for whom we care.
One woman stated that she necessitated a day off to be able to spend some quality time with her daughter and away from her afflicted husband. So, she phoned her son who had not been involved in the caregiving of his father at all. His response? Of course! And he came. She was delighted and quite surprised.
It struck me that many times we find ourselves surrounded by many who would like to find a supporting role but haven't a clue as to where/when to step in. Families, too, may find this difficult.
In various studies and articles, it is quite common for one person to step in as the 'caregiver' of the one stricken. The others will step back and wait for instruction or for the fatal end. It does vary.
However, what doesn't seem to always change is the dynamic that runs a course of:
1) Denial
How can we be sure she really has dementia or this form of dementia?
2) Terms of care
Where to put them? Type of care? The cost of Care? How to handle situations which may arise.
I remember that we were all pretty much in agreement that Mom would be placed in a memory care facility as she was already a very demanding and difficult personality and would drive anyone who attempted to care for her to the brink of insanity, themselves. It simply couldn't be done without human cost. Yet, there was a call in which someone told someone else that it was very wrong for us to put her into one of those centers, and it was our duty to take her into our homes. The respondent of the call remarked that we could, very quickly and easily, place Mom's things into suitcases and bring her to their home. The caller hung up and never brought it up again. Odd? Hardly.
Of course, it's easy for one person to believe someone else should take the responsibility for care, and it should be their mission - not considering all the pitfalls, trials, and dangers that this would entail.
There also tends to be a "packing" mentality of siblings. These may also be bolstered by the patient. In this phenomenon, there is an uprising of tensions which were dormant for years and come to surface upon the diagnosis of the patient. This could come from a number of issues, but it's actually quite typical. The catalyst is usually something to do with diagnosis and care for the patient, or even the matter of how the monies are employed for their care (and then there's the estate, etc).
With our family I fell into the space of caregiver, one brother is the attorney, one brother is the accountant for taxes, and the other helps with advice, financial dealings and in any other manner he can. We're pretty lucky in all this. But, when push comes to shove, I am the one who has the responsibility of Mom, overall. This happened because of the powers-of-attorney she wisely (due to my brother) had in place before any of this had come to fruition.
Taking roles in the care of the patient is actually something that's recommended for families. This allows the one caregiver to not have to shoulder the total responsibility and also keeps everyone in the loop as to the care and ongoing processes.
While not everyone is able to visit, Mom knows they're about - and she has vivid dreams that involves them all which keeps her heart warm.
Now, while Mom may be much sweeter and easier to deal with, she is still imperious. To be honest, my hat is off to those who are able to care for their patient in their homes and find themselves far from homicidal mania.
There are still many questions about Mom's care and her disabilities, which I welcome as it prompts me to delve more deeply into her care and the research about it, as well. While it still seems difficult at times to tend to her needs (both in paperwork, appointments, and time) I am still able to live and work my life for the greater part.
I know I can count on my brothers when it's important, and I know they are also looking out for me and not leaving me high and dry, as I have seen with other families.
Thank God for that!
Family Conflict in Dementia: Prodigal Sons and Black Sheep
Maintaining Relationships: Understanding How Dementia Affects Relationships and What Will Help
Family Dynamics - Facing a New Normal,Together
Dementia and Family Dynamics: Clinical Research Issues
Dementia Management Strategies and Adjustment of Family Members of Older Patients
One woman stated that she necessitated a day off to be able to spend some quality time with her daughter and away from her afflicted husband. So, she phoned her son who had not been involved in the caregiving of his father at all. His response? Of course! And he came. She was delighted and quite surprised.
It struck me that many times we find ourselves surrounded by many who would like to find a supporting role but haven't a clue as to where/when to step in. Families, too, may find this difficult.
In various studies and articles, it is quite common for one person to step in as the 'caregiver' of the one stricken. The others will step back and wait for instruction or for the fatal end. It does vary.
However, what doesn't seem to always change is the dynamic that runs a course of:
1) Denial
How can we be sure she really has dementia or this form of dementia?
2) Terms of care
Where to put them? Type of care? The cost of Care? How to handle situations which may arise.
I remember that we were all pretty much in agreement that Mom would be placed in a memory care facility as she was already a very demanding and difficult personality and would drive anyone who attempted to care for her to the brink of insanity, themselves. It simply couldn't be done without human cost. Yet, there was a call in which someone told someone else that it was very wrong for us to put her into one of those centers, and it was our duty to take her into our homes. The respondent of the call remarked that we could, very quickly and easily, place Mom's things into suitcases and bring her to their home. The caller hung up and never brought it up again. Odd? Hardly.
Of course, it's easy for one person to believe someone else should take the responsibility for care, and it should be their mission - not considering all the pitfalls, trials, and dangers that this would entail.
There also tends to be a "packing" mentality of siblings. These may also be bolstered by the patient. In this phenomenon, there is an uprising of tensions which were dormant for years and come to surface upon the diagnosis of the patient. This could come from a number of issues, but it's actually quite typical. The catalyst is usually something to do with diagnosis and care for the patient, or even the matter of how the monies are employed for their care (and then there's the estate, etc).
With our family I fell into the space of caregiver, one brother is the attorney, one brother is the accountant for taxes, and the other helps with advice, financial dealings and in any other manner he can. We're pretty lucky in all this. But, when push comes to shove, I am the one who has the responsibility of Mom, overall. This happened because of the powers-of-attorney she wisely (due to my brother) had in place before any of this had come to fruition.
Taking roles in the care of the patient is actually something that's recommended for families. This allows the one caregiver to not have to shoulder the total responsibility and also keeps everyone in the loop as to the care and ongoing processes.
While not everyone is able to visit, Mom knows they're about - and she has vivid dreams that involves them all which keeps her heart warm.
Now, while Mom may be much sweeter and easier to deal with, she is still imperious. To be honest, my hat is off to those who are able to care for their patient in their homes and find themselves far from homicidal mania.
There are still many questions about Mom's care and her disabilities, which I welcome as it prompts me to delve more deeply into her care and the research about it, as well. While it still seems difficult at times to tend to her needs (both in paperwork, appointments, and time) I am still able to live and work my life for the greater part.
I know I can count on my brothers when it's important, and I know they are also looking out for me and not leaving me high and dry, as I have seen with other families.
Thank God for that!
Resources
Maintaining Relationships: Understanding How Dementia Affects Relationships and What Will Help
Family Dynamics - Facing a New Normal,Together
Dementia and Family Dynamics: Clinical Research Issues
Dementia Management Strategies and Adjustment of Family Members of Older Patients
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