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Help with Senior in Palliative

Started by Heatheru

04 Feb 2021, 8:30 PM

Hi, I have been a key care giver for my husband's mother and father for the past year. My father most recently has been placed in palliative care. Against Dr.s wishes my husband brought him back home (his house) to be cared for. My mother in-law has alzheimer's and needs 24 hr care as well. Right now we have full time care in the home for both. He is a very difficult man and is very sick, he is in constant pain and battlling all care providers including family. He refuses to take his meds we are grasping at straws and can't do this anymore. When he was in the hospital he refused to stay, was screaming and yelling and they had to call secuirty until we went and picked him up. It was either that or they were calling security. He has some form of dementia so this is not helping. He is not at the state of needing to go to Hospice but pain in unberable and this is also causing issues with his wife. Any suggestions? I don't think he can stay at home anymore as he needs more medical intervention and care. Also my husband feels guilty if he does not give his father his wish of dying at home. HELP

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Reply by NatR

04 Feb 2021, 9:38 PM

Dear HeatherU,

my heart goes out to you as I read your letter and the situation you are in.
it's admirable that your husband wants to do as much as he possibly can for his parents. The problem is - this health crisis is way more than you or a few visiting caregivers can cope with.

safety comes to mind - yours, the caregivers - your mom needs protection as well.
I'm hoping that someone can offer the right answer - but frankly to me it sounds dangerous and stressful for all parties

you are correct in thinking yoir father in law needs more staff, medication and supervision.
please let your husband know that a safe and efficient care centre is much more beneficial- and will give his mom and dad the care he wants them to have

it's hard to admit you aren't enough - that someone else needs to do it, several someone else's... it so hard - so much guilt and hurt at not being able to do it

i have followed the story of Lisa Raitt and her husband who has early onset dementia
Lisa wanted to do it all at home, but she was in the line of battle - and was injured by her husband
She did call the police and her husband was placed where he was safe, others were safe from him, he could be monitored and treated
He got the right meds
His loved ones were safe, and everyone could relax and know the situation was handled

I was a PSW and I really enjoyed working on the locked wing with dementia patients, they liked me, we had a good relationship and we tried to add the little things that matter, hugs, smiles, conversations and ensure they were stable and as content as they could be

I hope you can talk to your husband and together you can find the right answer
the doc was right, your dad needs more than the minimal coverage at home - it's a danger for the workers too.

you came to the right place - I hope what I say has helped even just a little
write and let us know how things are going
you can vent and ask questions

it's a tough row to hoe, caring for loved ones at home
but Admirable to want to ...
hugs
NatR ❤️

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Reply by Nouce

08 Feb 2021, 12:49 AM

Dear HeatherU,

The agony of caregiving for elderly family members! Ah I can feel it. The urge to scream. The urge to run away. The desperation that no one seems to have a good way to help.

The burdern you are caring is great. I want to hold you and tell you it's OK to insiston getting more help. You can do so much, and you are so loving, but you cannot do it all.

Know that I care about you, and will try to walk with you even from far away on virtually.

You are doing what is right and good.

Nouce

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Reply by Daughtering Along

25 Jul 2021, 5:56 PM

Hello,

I have just discovered this site and this forum. My situation is somewhat similar although I have been caring for my parents for the last few years while they lived in an assisted living apartment in my community. We reached a crisis stage over the last few weeks and months as my mother, who has Alzheimer's, began getting angry and verbally abusive to the home care staff, while my father who has vascular dementia, suffered a steep decline in his abilities and suddenly developed dual incontinence.

Both parents went into a nursing home this month and my father immedirately became almost entirely bedridden after one day while my mother is now even more angry and agitated. The staff told me to not visit for awhile so my parents can get acclimated to the nursing home, but it is so difficult to not be able to go in to visit them. I feel like I have abandoned my parents. Complicating my feelings of grief/guilt is the fact that the staff are run off their feet and cannot even answer the phone so I can ask how my parents are doing.

I feel like my father is so depressed that he will die soon. I wish he could go into a hospice setting rather than spend his final weeks, days, hours in a nursing home with no stimulation and the bare minimum of care.

Meanwhile, my mother is so angry, although she is usually happy to see me. I feel like I made a huge mistake bringing my parents to this place, although it was my only option.

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Reply by Seeker

26 Jul 2021, 6:35 PM

Hello Daughtering Along: Thank you so much for taking the time to share your story. It is a heartbreaking one. The road of caring for someone with dementia (never mind two people!) can be exhausting. The grief can seem endless, as one loss is quickly compounded by another. It can be so hard to still see the person underneath all the behaviours that can come as the disease steadily changes the way the person thinks and acts.

I have worked with families caring for someone with dementia for many years and it is usually behaviours and incontinence that cause them to eventually need to move the person into a long term care home. In my experience, this is NOT a sign of failure but rather a very predictable step in that particular caregiving journey. In my experience it is extremely rare for a family to be able to provide care in the person's home right til the end of life. Even the most loving, close knit, well resourced family finds that this is not one but several full time jobs and just not possible. I hope this will help you to see that for people who work with people with dementia and their families, it is absolutely expected that a move to a long term care home will be needed at some point, and that point is now for you and your family.

That said, it can be very hard to go through this step. Guilt, sadness, loneliness, a change in routine and needing to share the care are often companions in this process. It is generally not a good idea to try to manage this on your own and, fortunately, you don't have to. I don't know where you live but the Alzheimer Society of Canada has offices all around the country- you can speak with a counsellor who can help you with your questions, feelings, worries for the future and concerns about your parents. These counsellors are experienced in working with families and will be there for you over the long haul - you can call them as often as you need to. You will find the contact information for the office closest to you at www.alzheimer.ca

On that site, you will also find good information about the move into a long term care home. Sometimes it helps to read that what you are feeling and going through is not unusual. If you have any trouble finding it, I am sure the counsellor would be able to help you with that, too.

Finally, it is often a good idea to visit when a person has recently moved into a long term care home. Again, there may be good reasons why you have been asked to stay away for now and my experience may not fit your situation, but typically it is helpful for the person with dementia to see someone familiar (even if they are not sure exactly who you are, they may well feel comforted by a familiar face and a friendly voice). You might be able to bring some items from home or some familiar foods that will also bring comfort. Some families have even taped a recording of their voice that the staff can play if that helps the person settle during times of unrest and upset.

I hope this gives you a little food for thought and a lifeline to hold on to during this difficult time of transition for both your parents and you. It sounds like you have done what you needed for a long time now to in order to be sure your parents are safe and cared for. While it may be time now to take a breath and care for yourself a little, you are in the unique position of being able to give your parents what only you can give - your love and support.

All the very best!

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Reply by eKIM

26 Jul 2021, 6:54 PM

Daughtering Along. I love your handle.

I am sorry that you are going through such tough times. Just remember: anytime you need additional support, we are here for you.

It is sweet that your mother (even while feeling anger) is happy to see you. Cherish these times.

Her anger might be entirely situational/circumstantial.

Do you take the fact that she is angry as being anger towards you? Do you really think that is the case? I wonder if you should talk to someone about that.

As for your Dad, at our residential hospice here, we want people to make applications/referrals to us.

The Intake Coordination reviews them and helps determine the best course of action. Generally, people are admitted who are viewed (by the doctors) as having less than 3 months to live.

You said, “I feel like I made a huge mistake bringing my parents to this place, although it was my only option.’ That being the case, then it was not a mistake. You did the best you could for them.

There is a HUGE difference between guilt and regret.

Guilt is for people who did something that perhaps they should really feel guilty about. As a result, they “beat themselves up” about it. From what you said, that doesn’t describe you: That isn’t you.

Regret , on the other hand, is a commonality with all of us. We regret that things turn out a certain way, but it was unavoidable.

It doesn’t help our grieving (i.e. grieving the loss of better times) process if we unnecessarily burden ourselves with unwarranted feelings of guilt.

Be kind to yourself. Be kind to the wonderful daughter that you are.

- eKim

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Reply by Nouce

27 Jul 2021, 2:24 PM

Dear Daughtering,

Walking with family members on the long dementia journey is exhausting, frightening, and sometimesoffers flashes of insight. Thank you for sharing so fully and being so honest.

It's OK to cry, or even scream (when you are not with your loved one), as you live into your response. Sometimes it may help to think of yourself not as the daughter but as the care-giver. It's not a fully clear way to live, but it can help with immediate survival.

It's also OK to regret, sometimes resent, and perhaps at times give thanks for what your are living.

Love yourself.

Nouce

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Reply by Daughtering Along

27 Jul 2021, 7:56 PM

Thank you to all who replied with such kindness and support.

it is a huge adjustment to go from being the person who was responsible for everything - coordinating care agencies (and taking the calls from frustrated care workers who couldn't get my parents to accept help), keeping the bathroom stocked with Depends, the fridge stocked with juice and snacks, dealing with various their health issues, doctors appointment, etc - to completely giving up control over the care of my mom and dad.

in my heart of hearts, I know this is where they have to be. I knew the transition would be hard on them, but I didn't know how hard, nor did I expect my own grief to be deep.

My mother can still use the phone and has called me. Some calls are pleasant, others hard. She tells me everyone at the home is "on their way out." I don't think my mother is angry with me, but she can be a very angry person, frustrated by her condition, loss of independence, etc. To be fair, many of the fellow residents appear to be farther along the Alzheimer's and Dementia road than my parents who, although they need a lot of care and supervision, are still aware and quite perceptive at times. Being immersed in this new world where many are non-verbal and quite late stage is a little too much reality for them. For me too.

I plan to go in later this week for a visit and to take some family photos and other things to cosy up their space. One week apart is about all I can take. Even though the stress and pressure of supporting them in their apartment was all-consuming and I did feel a bit trapped at times if I am honest, I love my parents very much and don't want them to feel that I have abandoned them. They are already asking why I haven't been visiting as often as I used to.

We do have an Alz Society chapter in our community and they have been helpful.

Thank you all again for the replies.

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Reply by eKIM

27 Jul 2021, 8:31 PM

My wife of 52 years and I have 2 daughters. We all share a deep love.

I know that they will "be there" for us when we are not in the best of shape someday.

It is such a pleasure to know you. To know that there are other sweet, loving daughters in this world.

You have perfect strangers here who think the world of you.

And you are in our hearts as we wish you peace and love.

eKim

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