Tag: Care

The difference of love vs. burden

– I apologize for the lack of good writing. I had to write quickly before loosing my window of opportunity to write for the evening. Too tired. – 

Today I had a very infuriating phone call with a sibling of my father’s. They are known to be chauvinistic and condescending, and I experienced it at full brunt for the first time. Basically he was trying to bully me into letting him take care of my father, since he knows better, insinuating that I as a female couldn’t possibly take charge properly. He actually went as far as to referring my father as a burden. This angered me so much. If you love someone, they can’t possibly be a burden. I don’t feel that my father is a burden. He is my kin, I chose to take care of him, not because there was no choice, but because I care and I love him. 

I’ve learn to distinguish his needs within the limitations due to his condition, from my own needs and ‘wants’. I try to be pragmatic and practical. They cannot see this no matter how much I try to be patient and educate them. All of what I have done came under attack today, and I have to say, I found it very hard to deal with. It broke me down post phone call, esp. after the very long week I’ve had. 

Long distance relatives showed up on last Friday eve., coming to visit, but they don’t otherwise call to inquire of my dad’s condition. Despite my sending them detailed updates and links to help them understand and be better informed, they don’t bother to be educated. They don’t really care deeply enough. They showed up and wreaked havoc. Then to have them also disregard my guidance and requests for them to respect visitation guidelines, which ultimately caused my father’s change in behaviour with depression and added fatigue. 

Unfortunately, there was only so much I could do. Their lack of regard and respect resulted in my dad’s weaker state, and him falling due to being dizzier than norm. Nurses found him to be agitated post visits and he would pace to try to gain some peace, but since he was weaker and dizzy, he tripped and fell. They choose to not disclose the facts of my dad’s fall and condition when asking for my authorization to take him out that day, even when I asked my dad’s condition, they said ’ oh he’s fine’. I found out when I showed up at the dinner that my dad looked rather shockingly unwell, that he had fell and maybe just sprang his wrist and had a few scrapes. I immediately examined dad’s wrists, and discovered that he likely had a fracture or broken bone in his wrist. How could they do this?! They knew and they saw how he looked, yet for their own selfish reasons, they lied to me, and dragged my poor dad, who now had a very painful wrist out to dinner so they can have their planned dinner. and pour their guilt out by overbearingly not letting my dad do a thing. This has a detrimental affect on my dad. It made him feel old and useless, depressed by it, he gave up and just let them do whatever and stopped trying to express himself at all. Just b/c one has alzheimers and dementia, it doesn’t mean they don’t still have a sense of pride and want to be self sufficient. 

I made the assessment on dad’s condition and decided that was enough. I took him back to his home. and after talking to the nurses and reprimanding them for missing the protocol in informing me of his fall, it was decided that the paramedics would come to take him to emergency. Unfortunately it was a busy night, and a full moon that seemed to bring out more mentally unstable folks out, I waited with my dad for 6.5 hours on and off before a diagnosis was made. Luckily it was only a med. fracture and so no surgery was needed. The paramedics took him back and had him tucked in bed, while I made it home before falling asleep at the wheel. I feel bad that my father had to suffer due to the ignorant, but am thankful he’s doing fine, b/c of the dementia, he isn’t as acutely bothered by the a pain in the wrist and can sometimes be unaware of the cast too. Since they have left, he’s in a much better mood again. Also the results of the medication reduction has also shown some improvement to his persona which started last week right be his siblings showed up, he is less withdrawn, and I’m seeing him able to engage a bit more, though the downside is that he’s delusional dementia is a bit stronger again and he’s sleeping less through the nights. Hope we can find the right balance for him soon.

no smile to be had | hair cut + shave day

 

no smile to be had | hair cut + shave day on Flickr.

I can barely get him to smile nowadays. I used to be able to get him to smile post buzz cutting his hair, trying to charm him with how spiffy he looks and now the nurses will see how handsome he is without the scruff. But no reaction the last couple of weeks.

He’s loosing himself. His eyes droop and his eyes seem to be loosing colour. He’s more irritable as well. Even his long term memory is getting less and less. I know what’s to come, and I can accept it, but I still feel anxious and sad.

holding hands

he now holds my hand | hair cut + shave day on Flickr.

In the last few weeks, my father has accepted my hand to help stabalise him when he walks. Now that he’s struggling a lot with his heart condition, atrial fibrillation/ arrhythmia, he’s even more dizzy and weak. I’ve found him to be unwilling to getup sometimes, until I offer a hand. He now holds onto my hand and won’t let go even when he’s safe to do so.

It’s such a change in relationship, when my father rarely even offered to hold my hands when I was a little girl. It felt awkward at first due to us never having that kind of contact.

This visit found us walking hand in hand slowly, at his pace, down hallways when I take him downstairs to the garden to eat the take out lunch I bring. Each time I see him, he seems to be another increment more faded. It’s moving so fast.

Bittersweet moments seem endless these days.

a tweet

RT @cc4alz: Join #carechat this weekend RT “@caregiving: Connect w fellow Caregivers Sunday! Join Caregiving Twitter Party 8pm ET http:/ …

dilemma

such a dilemma. do I move closer to dad while he’s on the waitlist for a care home in Van? Time is of the essence… Tired of moving though.

Bittersweet

Just had the annual care conference for my father’s care and condition. It is bittersweet. He’s more stabalized now, compared to last year, but his condition has changed quite a bit. Last year he had onset delusional dementia and minor alzheimers. Now both are strong, with Alzheimers taking over, and he also has T.I.A., a bothersome lower back (after his injury), and Atrial Fibrilation. He can no longer hold a conversation much, tho he can still express his unhappiness and tell others that he waits for my visits (he chooses not to interact with anyone else much, so unlike the dad I know). I have also been advised to lessen the degree of intervention from 4 to 3, request for DNR, since if they did so, it would likely break a lot of his porous bones and not help at all 🙁 It is hard to make the judgement calls for another person’s life, even though knowing it is what is best for him.

I visited dad yesterday, and for the first time in my life, of what I can remember, he held my hand, like that of a child, uncertain of their own steps, or direction, just wanting to be guided. I felt overwhelmed a bit with this change, it means yet another new chapter.

I still struggle with whether or not to move him into another care facility, esp. with him wanting to see me more often, with nurses telling me he often waits by the elevator, and how much basic enjoyment he gets out of eating Chinese food, familiar comfort food, in my opinion. He eats it with more gusto when compared to regular Western fare, so that’s the only way I can tell. The downside is the unknown amount of stress it may affect him in the short term, ore would it be long term? One of the nurses (the most caring and competant one) at the current facilitly recommended to me another facilitly that her mother just got into. It sounds better than all the options I had known prior, it’s a mixed population 50/50 Chinese/Caucasian, which means workers that speak both languages and 3 days a week they get Chinese meals. They have a double door system so even the Dementia/Alzheimer patients gets to go downstairs to the communal garden on their own, so more place to wander, less cooped up. The bonus is that it’s within Vancouver, nearer, so I can visit more often at any time, as well as other family members that he would enjoy seeing.  I think I’ll make the appointment for a tour at the least and get the motions started. There are usually very long waiting lists, so I will have time to decide…

The clock ticks slower

Well, it’s been about 1.5 months since father was diagnosed with T.I.A. and Atrial Fibrilations, and since then he’s had a few attacks at least. He’s now on blood thinners as a precaution to avoid a large stroke attack. As time goes by, I notice that my dad’s brain and ability is slowing down. Conversations started by him with a few words soon lag into silence, putting on clothes or shoes can take a long time.  Learning to be patient and letting him gather his thoughts or try on his own in his own time have been the new challenge, and also needing to explain it to those who may visit him. It’s hard to watch and not wan tto help immediately, but realizing that letting him try and do it is good for him, until he asks or responds to my offer of help, or that he actually gives up on trying.

Last week he went through a couple of days of semi clarity where the delusional dementia kicked in; I received quite a few calls from him with random requests that made no sense. His thoughts are less and less linear when it comes to the dementia part. That fades off through phases, where it’s less prominent, and he’s back to having the Alzheimers being more prominent. He is more like a child now where he doesn’t know when to stop with eating something he enjoys in the moment, or logically figure something out, such as putting his shoes on, and using a shoe horn for his beloved dress shoes.

Personally, I’ve been going through a self development period with wanting to shift my career, so this calmer period is a blessing in disguise. It’s afforded me some much needed mental and emotional breathing space to process the last year of chaos and emotional upheaval. 

Remember, if you are going through this, find youself the support and love in friends/family, as well as within yourself… to take good care of yourself mentally and emotionally. So important.

Accepting Support and Sometimes Give Less – a tricky balance

For the first time in my life, I have been overwhelmed by specific distant family members or family friends offering to help me and not my dad, when I haven’t thought of asking for myself. At first I felt guilty for receiving help, it felt unnatural, afterall, it’s my father that needs caring, right? wrong. I’ve had to learn to, and still am, accept help from others who offer without asking, in order for me to better be there for my dad, and for my own well being. The emotional stress alone from having the responsibility I’ve taken on is great, more than I could have ever imagined. 

For those of you who do not know this, I am the sole guardian of my dad’s care, who has onset dementia and alzheimer’s and now a couple of other health issues that could be life threatening. I also am terrible at asking for help/support when it is of a personal nature, in not wanting to burden others. Don’t get me wrong, I am much better at it in other aspects, such as work, as it isn’t as emotionally personal based. 

As a cousin put it to me recently, “Don’t feel that is is improper in accepting other’s kindness, it is a virtue to offer people a chance to love you..” Wow. I grew up not receiving much help or being asked if I needed help from my parents. I was brought up to be self sufficient, and grew up mostly on my own and learned to take care of myself, somehow taught to be proud of self sufficiency over the ability to accept help.  Also, having lived mostly with my dad, who lacked the ability to express love, I can now see where in the problem possibly lies.

With recent events of being guardian to my aging father, I also had to learn to be more discerning about when and where to offer help to everyone, as I can over do it, at the expense of my own free time and self care. I’ve come to learn that what is deemed as selfish isn’t so, it’s my own skewed perception on myself, realizing it’s really more about self preservation and self care.  I always believed people do the best they can and not judge, but why is it hard to have this kindness and understanding for oneself? Why do so many of us have this complexity and issue with it?

I know I’m not alone in this, particularly with those that are also givers by nature. I know half the battle is just being aware of our own perspectives and noticing whether they are realistic expectations or not. By being more aware of this myself, I’m glad to think that I’m possibly half way there to finding a new balance of giving and receiving… keeping fingers crossed that it gets easier.