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This poster is on here only to bash caregivers. She does have a vested interest in what happens to the house though and will make sure the caregiver doesn't get it.
Wow. Is that true? If so, it's awful, just awful. Shame on her/him.
I don't understand the equation some have that 'caregiving = terminally ill or close to death".
Yes, caregiving has it's place for the terminally ill but hands on caregiving can go for YEARS depending on the age and health of the aging parent (or child, sibling, aunt, uncle, whatever).
I agree - it's about providing a good LIFE (and death but that's a whole nuther topic).
This. I, nor anyone else, has limited caregiving to caring for the terminally ill. Caring for the terminally ill should include caring for both the physical and emotional needs of someone who is actively dying. Not everyone uses hospice to provide hands on care for their dying parent.
The purpose of my reply to the thoughtless response by another poster was to point out that some caregivers are helping their LOs have a comfortable, peaceful, and dignified death in their own home.
I hope I have adequately explained my thoughts because like others that have fled this forum, I refuse to get into a p match with the "regulars" (not you). Done.
I'm just curious about what other people do to keep themselves sane when they are the primary caregiver to an ailing parent.
I think the first step is to accept the fact that while this is the parent you know and love, it's NOT the parent you know and love. Mental changes cause them to act in ways you wouldn't expect. Just because Dad loved to do XYZ hobby or activity in the past doesn't mean he will enjoy it now. You just have to feel your way through each day.
Example: My mother loved to bake and after her Alzheimer's progressed, family members would try to engage her in baking and she would get agitated and reject it completely.
Quote:
Originally Posted by germaine2626
Cope? What does "cope" mean?
I have to admit that I am rather jealous, of some of the people in my caregiver's support groups. One of the women who I know fairly well, cares for her husband with advanced Alzheimer's at home, but has three adult children, their spouses, several adult grand children and three siblings of her husband who all live in the area and actively assist in his care. In addition, she can afford to send him to brain stretchers/adult day care several days per week plus hire help at home.
Another person has a whole team of volunteers (friends, relatives, co-workers, strangers) who sign up for four hour shifts once or twice a month to help out. One close friend coordinates the whole process and it done on an on-line computer site.
This makes a HUGE difference. I have no one to help with my father's needs.
Quote:
Originally Posted by Briolat21
He doesn't really take that much effort from me...
Briolat, it's great that you have your father with you at home, but it appears, from what you write, that your Dad has extreme patience and acceptance of his condition which may contribute to it being "not as much effort" for you. Your description in past threads is that he is bedridden 24/7, and if he can't reach something or needs something then at times it will have to wait until someone is home to retrieve it for him, etc.
In my family, there is no way my father or my MIL would accept lying in the same place staring at the same 4 walls and not having someone to serve their needs on call. They would be depressed, angry and resentful which would be transmitted onto us family members. In fact, I was just talking to a relative the other day who said that HIS mother calls several nights a week begging him to come and "fix her TV" (it's not broken, she just hits the wrong button on the remote and it messes up the settings.)
This kind of thing can be very wearing. So consider yourself lucky (and your Dad is too for having the internal will to be content!)
Quote:
Originally Posted by chiluvr1228
The last year of his life were horrible for all of us. He couldn't walk without a wheelchair or walker and he had numerous doctor appointments. Getting him in and out of the car was tough as we had a small car and he walked soooo slow and it was 95 degrees with high humidity. Then one day while trying to get him from the bathroom to his hospital bed, he fell backwards landing on me. I just started screaming at him "why did you have to smoke for so many years"? Did I mention I didn't cope well? We had nurses from Hospice stop by for an hour or so every other day but they weren't much help in the caregiving department. They basically were checking his vitals and making sure we weren't stealing his opiods which really pissed me off.
It was the worst year of my life.
I'm sorry you went through that, and I appreciate your honest perspective. I think that is helpful to us caregivers -- to know that it is only human to be angry about the situation and admit that it's something we don't necessarily have the ideal skills for.
Quote:
Originally Posted by KathrynAragon
I just guess I never imagined that my fifties - years that should be good years - would be completely overwhelmed by the critical needs of multiple dying parents.
I thought my 30s-40s-50s would be great too, because my parents didn't have any of this to deal with and I thought I'd be like them!
Quote:
Originally Posted by jencam
His condition was hard no matter how much money and help she had. She didn't want a lot of respite care. He needed HER. That whole thing broke my heart. The way she clung to the coffin.
Yes, absolutely. Money was irrelevant if she was the air he breathed. Often, the spouse is the only one who can get a person with Alzheimer's to respond to anything.
Quote:
Originally Posted by KathrynAragon
Amen to this. In this regard, my oldest brother is a godsend. Even though he lives several states and 17 hours drive away, he has made several trips back and forth over the past year helping with Mom. But even better - just a few days ago he called and said, "I want us to get together - but I want it to be a fun time. I don't want to move Mom anywhere, or clean out her apartment, or do anything like that - let's pick something fun to do and GO DO IT TOGETHER."
That's the thing a lot of people don't understand going in. A lot of times the situation makes you end up being "caregiver/problem solver/bad cop" and you cease to have a normal daughter/son/family member relationship of just enjoying each other.
_____
OP, my advice is to just not have too many expectations of anything. I know as an independent person you want to manage the Dad situation the way you manage your career/life but it just isn't realistic, I'm sorry to say. But do rely on any assistance you can get for respite or whatever. And feel free to vent here.
I coped with being the 24/7 caregiver for the last four years she was alive. Yes, it could be tough and draining but it was made 'easy' by the fact that I loved and cherished her deeply and I did what needed to be done. That both was my focus and my coping mechanism. She deserved the best of me and the best care and comfort I could provide. Nothing else really mattered.
Yes, love is not enough. I am going on 12+ years with DH - dementia. Horrible life. He does not know me, does not know what a regular life is or was, does not know his children, etc. He is in great physical condition for a 74 yr old but his mind is at 2 years old. I am weary.
Is your loved one respectful of you? Does he/she love you and appreciate you? Is he/she rude to you or polite to you in general? Does he/she throw things at you, or scream at you, or accuse you of terrible things (to your face and to others)? Does he/she run down the street naked or try to eat cigarette butts or call your cell phone at 3 am just to ask you what the heck you were doing and why aren't you getting ready yet to take them somewhere? Has he/she ever killed anyone while driving long after he/she should have stopped driving? Does he/she give money away to people you know are taking advantage of him/her? Does he/she ever give heirloom jewelry away to neighborhood kids just because he/she doesn't see these heirloom pieces as any more valuable than Mardi Gras beads? Has he/she developed an eating disorder and refuse to admit that he/she is anorexic even though their healthy is being destroyed one day at a time? Does he/she refuse to keep up with the most basic hygiene? Does he/she refuse to take prescribed, life saving medications and accuse you of trying to kill him/her on a daily basis? Does he/she insult you and respond sarcastically to you day in and day out, as the normal mode of conversation? Does he/she lay in their room crying for days on end? Does he/she refuse to do the most basic therapy or things that would improve their quality of life, instead expecting everyone around them to wait on them hand and foot, entertain them, feed them, clean them up, clean up their surroundings, etc.? Does he/she undermine your relationships with other family members while simultaneously living in your house? Does he/she refuse to move where your job is, your life is, your livelihood and instead expect you to uproot your career, your family, your life to move closer to them?
My point is that every situation is different. Once again, I'll point out that loving and cherishing someone deeply, and even doing what needs to be done, doesn't necessarily make anything easy - in fact, sometimes it makes things harder, especially when those emotions and feelings of obligation are not returned.
Each of the above scenarios are scenarios I've read about on this forum, or experienced myself. This is the tip of the iceberg - there are literally thousands more examples of extremely difficult behavior that makes it very trying, sometimes to the point of physical or emotional breakdown, to care for those who need our care the most.
I think the first step is to accept the fact that while this is the parent you know and love, it's NOT the parent you know and love. Mental changes cause them to act in ways you wouldn't expect. Just because Dad loved to do XYZ hobby or activity in the past doesn't mean he will enjoy it now. You just have to feel your way through each day.
Example: My mother loved to bake and after her Alzheimer's progressed, family members would try to engage her in baking and she would get agitated and reject it completely.
This makes a HUGE difference. I have no one to help with my father's needs.
Briolat, it's great that you have your father with you at home, but it appears, from what you write, that your Dad has extreme patience and acceptance of his condition which may contribute to it being "not as much effort" for you. Your description in past threads is that he is bedridden 24/7, and if he can't reach something or needs something then at times it will have to wait until someone is home to retrieve it for him, etc.
In my family, there is no way my father or my MIL would accept lying in the same place staring at the same 4 walls and not having someone to serve their needs on call. They would be depressed, angry and resentful which would be transmitted onto us family members. In fact, I was just talking to a relative the other day who said that HIS mother calls several nights a week begging him to come and "fix her TV" (it's not broken, she just hits the wrong button on the remote and it messes up the settings.)
This kind of thing can be very wearing. So consider yourself lucky (and your Dad is too for having the internal will to be content!)
I'm sorry you went through that, and I appreciate your honest perspective. I think that is helpful to us caregivers -- to know that it is only human to be angry about the situation and admit that it's something we don't necessarily have the ideal skills for.
I thought my 30s-40s-50s would be great too, because my parents didn't have any of this to deal with and I thought I'd be like them!
Yes, absolutely. Money was irrelevant if she was the air he breathed. Often, the spouse is the only one who can get a person with Alzheimer's to respond to anything.
That's the thing a lot of people don't understand going in. A lot of times the situation makes you end up being "caregiver/problem solver/bad cop" and you cease to have a normal daughter/son/family member relationship of just enjoying each other.
_____
OP, my advice is to just not have too many expectations of anything. I know as an independent person you want to manage the Dad situation the way you manage your career/life but it just isn't realistic, I'm sorry to say. But do rely on any assistance you can get for respite or whatever. And feel free to vent here.
I never suggest that my situation (which I would say is "lucky" as far as these things go) - is normal. But that, there is no normal.
Some people accept disability gracefully, some do not.
Some accept help easily, some do not.
Which is why I believe (and have stated many times) that the family dynamic (and the relationship specifically between the cared-for and care-provider) makes all the difference.
Most of the folks on this board who have discussed what I would consider to be a problematic caregiving relationship/dynamic --- well, the familial relationship was already troubled/strained/rocky.
caregiving takes that - and adds another layer of stressors - magnifying the already rocky points. I'm sure some people do *great* with caregiving inspite of those challenges, but I would imagine that for many it means a quick trip to resentfulness, significant stress/anxiety and ultimately burn-out.
There's no question that my personality, and my Dad's personality (and originally my mom, as for the first 4 years - it was both of them, both bed bound) have both contributed to our making this work. If he were an angry/sullen/impatient person - it is likely (no matter how good natured I may be) I wouldn't have been able to do this for as long as I have. Or, the opposite - if I were a person given to short temperedness or volatility - that the situation would have failed.
As it is, we're all pretty Zen about accepting our limitations and just trying to do the best we can with what we have. So far, it's worked for 9 (nearly 10) years..
I'm very lucky both to still have my father, and secondly that our family dynamic was one that has enabled this situation to work as well as it has.
I never suggest that my situation (which I would say is "lucky" as far as these things go) - is normal. But that, there is no normal.
Some people accept disability gracefully, some do not.
Some accept help easily, some do not.
Which is why I believe (and have stated many times) that the family dynamic (and the relationship specifically between the cared-for and care-provider) makes all the difference.
Most of the folks on this board who have discussed what I would consider to be a problematic caregiving relationship/dynamic --- well, the familial relationship was already troubled/strained/rocky.
caregiving takes that - and adds another layer of stressors - magnifying the already rocky points. I'm sure some people do *great* with caregiving inspite of those challenges, but I would imagine that for many it means a quick trip to resentfulness, significant stress/anxiety and ultimately burn-out.
There's no question that my personality, and my Dad's personality (and originally my mom, as for the first 4 years - it was both of them, both bed bound) have both contributed to our making this work. If he were an angry/sullen/impatient person - it is likely (no matter how good natured I may be) I wouldn't have been able to do this for as long as I have. Or, the opposite - if I were a person given to short temperedness or volatility - that the situation would have failed.
As it is, we're all pretty Zen about accepting our limitations and just trying to do the best we can with what we have. So far, it's worked for 9 (nearly 10) years..
I'm very lucky both to still have my father, and secondly that our family dynamic was one that has enabled this situation to work as well as it has.
You are blessed but you also have a great attitude about it. Your dad's great attitude certainly does help matters.
Most of the people on this forum - in fact, most of the caregivers I know in real life too - have a range of challenges, some more difficult than others. But regardless of challenges, a gracious, amenable personality makes any situation a LOT better.
Sometimes love is not enough. Some people who need care, and some relationships, are much more problematic than others.
When it came to my wife, love was more than enough for me. One size doesn't fit all. It wasn't problematic. It was my job as her husband and my honor and pleasure to do for her. I would take it back in an instant but for the fact that she would need me, would be in pain and I would never wish that on her.
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