Wish me luck folks

[Laura Corin]

5 hours ago, DawnM said:

Today he had the nurse call me.  I  was up in VA with my son touring a college, and the nurse told me he wanted to talk to me.

He said, "Dawn!   You have dumped me in this horrible place and ABANDONED me!"

Sigh.   I just saw him 2 days ago and told him we were going away for a couple of days.   He doesn't remember.

I'm sorry. It's so hard. 

It wouldn't have helped as the call was so soon, but the first thing I do when I go on holiday is to send my mum a postcard of the place, so she is reminded where I am and that I am coming back. Then I send her more over the course of the stay. I take stamps with me and buy several cards on the first day.

Best wishes to you.

[DawnM]

56 minutes ago, Laura Corin said:

I'm sorry. It's so hard. 

It wouldn't have helped as the call was so soon, but the first thing I do when I go on holiday is to send my mum a postcard of the place, so she is reminded where I am and that I am coming back. Then I send her more over the course of the stay. I take stamps with me and buy several cards on the first day.

Best wishes to you.

We were only gone for 2 days!

[DawnM]

4 hours ago, Harriet Vane said:

It's so painful to watch someone decline like this. Hugs for you.

A written note may help in future? You may well know this or have already thought along these lines, but I'll share how it worked for me with my aunt just in case it's helpful.

When my aunt had to be institutionalized, she had virtually no short-term recall at all. I kept a notebook in her room, and at the end of every visit I'd write a short paragraph in the notebook describing the visit, like so:

Hi Lisa!

I'm so glad we had a good visit today. We talked about the kids' playing piano and about music we love. They are working hard to get ready for their recital! We took a walk downstairs to look at the birds. We had some cookies for a snack. The purple track suit you wore today is really cute! I'll come again next week and I'll bring some nail polish. Love you!!!

I would leave the notebook open on her pillow, and I think others read and re-read those notes to her. 

The nursing staff also knew to simply call me if need be, often 4 or 5 times a week. I could swing her mood in about ten minutes most days. Stay cheerful. Listen to what he's anxious about. Then say sorry and give the explanation. Like: "Sorry you were so worried, Dad! I'm just out for a few days. I'll see you on Friday, I promise. I love you!"

It's a formula--he expresses his anxiety, he hears sorry, he hears an explanation, and he hears that you love him. Reassurance, connection.

I don't know, he seems to think we should visit daily and we just can't.   AND, he keeps begging to come home when he isn't lucid, and that makes him agitated if I don't go every day, which I can't do.

Talking on the phone is painful.   He can't hear a darn thing.

[Kassia]

1 hour ago, DawnM said:

I don't know, he seems to think we should visit daily and we just can't.   AND, he keeps begging to come home when he isn't lucid, and that makes him agitated if I don't go every day, which I can't do.

Talking on the phone is painful.   He can't hear a darn thing.

Oh, Dawn, what a nightmare.  You're doing the best you can and it's not enough for him - I know how hard that is.  😞  I'm so sorry about it all.

[DawnM]

4 minutes ago, Kassia said:

Oh, Dawn, what a nightmare.  You're doing the best you can and it's not enough for him - I know how hard that is.  😞  I'm so sorry about it all.

It just is what it is at this point.   

[Scarlett]

So sorry Dawn.  How far away is it from your home? Work?

[Harriet Vane]

3 hours ago, DawnM said:

I don't know, he seems to think we should visit daily and we just can't.   AND, he keeps begging to come home when he isn't lucid, and that makes him agitated if I don't go every day, which I can't do.

Talking on the phone is painful.   He can't hear a darn thing.

I hear ya. I'm so sad about his hearing--that was one issue I did not have to deal with re my aunt, but it DID make things really, really hard with my darling mother-in-law. And no, you cannot go every day. It's just a fact of life. 

[TexasProud]

This is the worst part.  When we put my husband's grandmother in memory care, they actually told us not to visit or contact her for a week or two she could get used to the place.  I don't remember the timing anymore, but she begged to come home somewhere between 1 month and 3 months I think.  It was horrible.

But then she settled in. She lived there for 4 years. At first, she would say, I am going home this weekend. ( Don't ever disagree or correct.  Just not helpful.)  Or next time you come and spend the night, I will fix you a big meal.  Her room was full of her furniture and her pictures and she eventually believed she was home. The last part was so much easier than the first few months. 

Hang in there. 

[scholastica]

I’m so sorry. This end of life parent care is the hardest thing. 

[DawnM]

2 hours ago, Scarlett said:

So sorry Dawn.  How far away is it from your home? Work?

5 miles from work and on my way to/from work.

[Scarlett]

2 hours ago, DawnM said:

5 miles from work and on my way to/from work.

That is great news. 

[DawnM]

Went to visit today.   Same 10 questions, asked 30 times.   

1. When can I come home?

2. Is coming home an option?

3. Where is the other place?

4. Why can't I stay here?

5. How much am I paying here?

6. Can you see if they can give me a shower, I haven't had one in weeks!   They don't give me showers here!

7. How much is the new place?

8. Why can't I come home?

9. What would it take for you to let me come home?

10. They don't have my channels on the TVs here, can you bring me my TV?

I am probably missing a few questions, but whatever.

[Harriet Vane]

Agonizing.

[Catwoman]

I'm so sorry, Dawn. This is just heartbreaking. 😞 

[Storygirl]

I'm sorry, Dawn. We had the endless questions about going home from my mom, who was living with me, three hours from the house she shared with my dad. And then constant requests for home after moving into skilled nursing.

However, she wasn't longing for that home. She was wanting her childhood home and her parents.

It is very, very typical for these repetitions for home to happen with dementia. And heartbreaking.

[Grace Hopper]

2 hours ago, Storygirl said:

I'm sorry, Dawn. We had the endless questions about going home from my mom, who was living with me, three hours from the house she shared with my dad. And then constant requests for home after moving into skilled nursing.

However, she wasn't longing for that home. She was wanting her childhood home and her parents.

It is very, very typical for these repetitions for home to happen with dementia. And heartbreaking.

Same experience with one of my parents. It’s bittersweet. 

Edited July 24, 2022 by Grace Hopper

[DawnM]

18 hours ago, Storygirl said:

I'm sorry, Dawn. We had the endless questions about going home from my mom, who was living with me, three hours from the house she shared with my dad. And then constant requests for home after moving into skilled nursing.

However, she wasn't longing for that home. She was wanting her childhood home and her parents.

It is very, very typical for these repetitions for home to happen with dementia. And heartbreaking.

He is not quite there yet, but my uncle (dad's brother) got there and yes, it was very hard.

I did get a laugh yesterday though.   My dad said, "What would it take for me to live at 6100 Smith Dr (I changed the name).    I live at 1905 Smith Dr.   My husband looks at me and whispers, "I don't know but we can ask them!"   😂

Edited July 24, 2022 by DawnM

[Laura Corin]

5 minutes ago, DawnM said:

He is not quite there yet, but my uncle (dad's brother) got there and yes, it was very hard.

I did get a laugh yesterday though.   My dad said, "What would it take for me to come back to 6100 Smith Dr (my home but I changed the name).    I live at 1905 Smith drive.   My husband looks and me and whispers, "I don't know but we can ask them!"   😂

Dark humour is very necessary,  I have found. My brother and I took to calling Mum 'Miss Haversham' when he was clearing her house, for the ropes of dusty spider webs that were draped everywhere.  She may also have been 'Aunt Ada Doom' at various points when she lived with us. The laughs ease the tension and allow me to carry on fairly cheerfully. 

[Longtime Lurker]

22 minutes ago, Laura Corin said:

Dark humour is very necessary,  I have found. My brother and I took to calling Mum 'Miss Haversham' when he was clearing her house, for the ropes of dusty spider webs that were draped everywhere.  She may also have been 'Aunt Ada Doom' at various points when she lived with us. The laughs ease the tension and allow me to carry on fairly cheerfully. 

Yes, absolutely. It's a survival skill.

[mom31257]

I'm so sorry, Dawn, that you are facing all of this!

I'm sorry for him, too. None of us know what we will face at any stage of life.

I'm praying for you and for him! Hugs. 

[DawnM]

Today I am putting a deposit down on his new place and filling out the paperwork.   I am paying the 1k difference for a private room.  I just think he will be more comfortable.   The larger of the 2 private rooms is $230 extra and although I could do that, I fear he would want more personal items in there, so I think we better stick with the smaller room.

Y'all, I feel like I need a vacation.   

[Kassia]

16 minutes ago, DawnM said:

\

Y'all, I feel like I need a vacation.   

You really do.  Hugs.

[TexasProud]

3 hours ago, DawnM said:

Today I am putting a deposit down on his new place and filling out the paperwork.   I am paying the 1k difference for a private room.  I just think he will be more comfortable.   The larger of the 2 private rooms is $230 extra and although I could do that, I fear he would want more personal items in there, so I think we better stick with the smaller room.

Y'all, I feel like I need a vacation.   

Yes, the stress is real.  Make sure you put boundaries around yourself for regular rest and refreshment. It won't be enough, but maybe it will keep you from collapsing. It is just hard.  And this will probably be a marathon, not a sprint. So you need to put on your own oxygen mask.  And just know, as I said before, he won't be happy for awhile and he will repeat himself A LOT and yes, questions, questions, questions. 

Sorry you are on this road. So many prayers and hugs headed your way.

[Kassia]

20 minutes ago, TexasProud said:

 Make sure you put boundaries around yourself for regular rest and refreshment.

This is what I wanted to suggest too but it's so easy to say and hard to actually do.  😞 

[TexasProud]

11 minutes ago, Kassia said:

This is what I wanted to suggest too but it's so easy to say and hard to actually do.  😞 

Yep, and honestly, what is hardest is mental/emotional rest.  For example, we went on a long weekend trip. I woke up in the middle of the night thinking about things I needed to do/should do, having dreams about things going wrong.  Then I had one glorious day where I didn't think of my mom and step dad's needs at all...like I forgot.  Then that night he called and nonchalantly mentioned he took my mom to the ER and she was in the hospital...  Sigh. It is part of the reason I have trouble actually resting and enjoying myself. Another shoe always seems to fall. 

[Harriet Vane]

I think you're making great choices, Dawn. Transitions are hard. 

[Kassia]

37 minutes ago, TexasProud said:

Yep, and honestly, what is hardest is mental/emotional rest.  For example, we went on a long weekend trip. I woke up in the middle of the night thinking about things I needed to do/should do, having dreams about things going wrong.  Then I had one glorious day where I didn't think of my mom and step dad's needs at all...like I forgot.  Then that night he called and nonchalantly mentioned he took my mom to the ER and she was in the hospital...  Sigh. It is part of the reason I have trouble actually resting and enjoying myself. Another shoe always seems to fall. 

I totally understand this.  The past five years have been horrible for us and it's just one thing after another after another with no break.  It's just been so hard.  😞  

[TexasProud]

2 hours ago, Kassia said:

I totally understand this.  The past five years have been horrible for us and it's just one thing after another after another with no break.  It's just been so hard.  😞  

So sorry.

[DawnM]

And this past week or so I have worked about 10 hours......Thur in the morning before DS and I drove to VA, and then while he did the campus tour, I worked, and then today I worked some early AM and then later today after I had done some things.

 

Now my principal wants me to be IN THE BUILDING to work.   Nope.   I can't, so sorry.....I have child care issues.   So......I will see you when school starts back again.

[Kassia]

1 minute ago, DawnM said:

And this past week or so I have worked about 10 hours......Thur in the morning before DS and I drove to VA, and then while he did the campus tour, I worked, and then today I worked some early AM and then later today after I had done some things.

 

Now my principal wants me to be IN THE BUILDING to work.   Nope.   I can't, so sorry.....I have child care issues.   So......I will see you when school starts back again.

This is what I've been thinking about you - you have a job, kids who need you, everyday life issues, and now all of this with your dad...it's a lot.  

[DawnM]

4 hours ago, Kassia said:

This is what I've been thinking about you - you have a job, kids who need you, everyday life issues, and now all of this with your dad...it's a lot.  

Thank you.

 and today I found out the nursing home room he is moving to is NOT furnished!  That is another stressor.   He needs a hospital bed by Tuesday, so now calls to the social worker, medicare, etc....

And he has to get his own TV service, so I need to work on that.....it never ends!

[Kassia]

6 minutes ago, DawnM said:

Thank you.

 and today I found out the nursing home room he is moving to is NOT furnished!  That is another stressor.   He needs a hospital bed by Tuesday, so now calls to the social worker, medicare, etc....

And he has to get his own TV service, so I need to work on that.....it never ends!

I would never have even thought about that - I'd just assume all nursing homes were furnished.  Ugh - I am so sorry about the constant issues.  😞

Edited July 25, 2022 by Kassia

[Harriet Vane]

Dawn, one item that made my father-in-law sooooooo much more comfortable is a reclining chair. He napped in it and he watched football games in it, and we could tell he got a lot of relief from pain in the chair. Since your dad is having some issues with mobility and stiffness, you might find that a good idea for him as well?

This is the one we got for both of my in-laws. It is both a recliner and it lifts (absolutely essential at this stage), and the grid-stitch (called baffling) on the back means the stuffing is less likely to shift and get lumpy over time. We were very happy with this chair.

https://www.macys.com/shop/product/prolounger-power-recline-lift-wall-hugger-chair?ID=8803144&CategoryID=29391&isDlp=true&isDlp=true&sizes=CHAIR_TYPE!!Lift Chair

Edited July 26, 2022 by Harriet Vane

[Ottakee]

Yes on the lift chair.  Call the local senior center and ask if they or a local charity has any hospital beds.   In our area we can borrow them for as long as needed 

[Mrs Tiggywinkle]

26 minutes ago, Harriet Vane said:

Dawn, one item that made my father-in-law sooooooo much more comfortable is a reclining chair. He napped in it and he watched football games in it, and we could tell he got a lot of relief from pain in the chair. Since your dad is having some issues with mobility and stiffness, you might find that a good idea for him as well?

This is the one we got for both of my in-laws. It is both a recliner and it lifts (absolutely essential at this stage), and the grid-stitch (called baffling) on the back means the stuffing is less likely to shift and get lumpy over time. We were very happy with this chair.

https://www.macys.com/shop/product/prolounger-power-recline-lift-wall-hugger-chair?ID=8803144&CategoryID=29391&isDlp=true&isDlp=true&sizes=CHAIR_TYPE!!Lift Chair

If you get an electric lift chair, please make sure the nursing home has a backup generator.  I’d have thought such things were required, but I spent hours this weekend helping elderly people stuck in those electric lift chairs and unable to get out when we had a widespread power outage after storms at 7 pm when a lot of elderly are sitting in chairs watching evening TV. And some were at one of the local nursing homes.  Nobody anywhere knew what to do so they called 911.

It was one of those random things I never thought about.

(Also after 15 years of picking up elderly people off the floor, a lift reclining chair is amazing.  People struggle to get up out of a chair and either get stuck in it or fall, so having the buttons to gently tilt the chair up and help the person stand is amazing and truly fall preventative. Until the electric goes out.)

Edited July 26, 2022 by Mrs Tiggywinkle

[Harriet Vane]

1 minute ago, Mrs Tiggywinkle said:

If you get an electric lift chair, please make sure the nursing home has a backup generator.  I’d have thought such things were required, but I spent hours this weekend helping elderly people stuck in those electric lift chairs and unable to get out when we had a widespread power outage after storms at 7 pm when a lot of elderly are sitting in chairs watching evening TV. And some were at one of the local nursing homes.  Nobody anywhere knew what to do so they called 911.

It was one of those random things I never thought about.

Intriguing.

I wonder if a simple solution might be a small portable generator that Dawn or her dh knows to bring over just in case after a storm? Power outages are not necessarily frequent (though I'm sure there's regional variation), so I'd hate to miss out on the chair based on that.

[Mrs Tiggywinkle]

5 minutes ago, Harriet Vane said:

Intriguing.

I wonder if a simple solution might be a small portable generator that Dawn or her dh knows to bring over just in case after a storm? Power outages are not necessarily frequent (though I'm sure there's regional variation), so I'd hate to miss out on the chair based on that.

I feel like it’s got to be mandatory to have a generator in a nursing home but who knows(they said last night their generator only supplied “essential power” like to oxygen generators). I’d have thought all nursing homes would at least supply beds too so that shows how much I know.

Edited July 26, 2022 by Mrs Tiggywinkle

[LifeLovePassion]

Does it have to be a hospital bed? Can you bring the bed he has at home or is he a fall risk and needs one? If he qualifies for hospice, they provide equipment including hospital beds. Mom used her reclining lift chair a lot. 

[ScoutTN]

23 minutes ago, Harriet Vane said:

Dawn, one item that made my father-in-law sooooooo much more comfortable is a reclining chair. He napped in it and he watched football games in it, and we could tell he got a lot of relief from pain in the chair. Since your dad is having some issues with mobility and stiffness, you might find that a good idea for him as well?

This is the one we got for both of my in-laws. It is both a recliner and it lifts (absolutely essential at this stage), and the grid-stitch (called baffling) on the back means the stuffing is less likely to shift and get lumpy over time. We were very happy with this chair.

https://www.macys.com/shop/product/prolounger-power-recline-lift-wall-hugger-chair?ID=8803144&CategoryID=29391&isDlp=true&isDlp=true&sizes=CHAIR_TYPE!!Lift Chair

That looks fabulous. I can see getting one for my mom at some point not too far away.

[ScoutTN]

Oh, Dawn, you have a heavy load. Praying for you and your dad tonight! And your college boy and your little guy!

[mlktwins]

1 hour ago, Mrs Tiggywinkle said:

If you get an electric lift chair, please make sure the nursing home has a backup generator.  I’d have thought such things were required, but I spent hours this weekend helping elderly people stuck in those electric lift chairs and unable to get out when we had a widespread power outage after storms at 7 pm when a lot of elderly are sitting in chairs watching evening TV. And some were at one of the local nursing homes.  Nobody anywhere knew what to do so they called 911.

It was one of those random things I never thought about.

(Also after 15 years of picking up elderly people off the floor, a lift reclining chair is amazing.  People struggle to get up out of a chair and either get stuck in it or fall, so having the buttons to gently tilt the chair up and help the person stand is amazing and truly fall preventative. Until the electric goes out.)

I've got the opposite problem with the electric lift chair.  We have one for my dad at his apartment.  He has 24/7 care there, but if someone is not in the room with him while he is in the chair, and he decides he wants to get up, he will do it on his own.  Very unsafe for him.  So I have it plugged into a remote control and the girls turn it off when they need to leave the room for a few minutes so he can't make it work.  The chair has been a godsend for the caregivers though.  

[matrips]

1 hour ago, Mrs Tiggywinkle said:

If you get an electric lift chair, please make sure the nursing home has a backup generator.  I’d have thought such things were required, but I spent hours this weekend helping elderly people stuck in those electric lift chairs and unable to get out when we had a widespread power outage after storms at 7 pm when a lot of elderly are sitting in chairs watching evening TV. And some were at one of the local nursing homes.  Nobody anywhere knew what to do so they called 911.

It was one of those random things I never thought about.

(Also after 15 years of picking up elderly people off the floor, a lift reclining chair is amazing.  People struggle to get up out of a chair and either get stuck in it or fall, so having the buttons to gently tilt the chair up and help the person stand is amazing and truly fall preventative. Until the electric goes out.)

My moms recliner/lift chair had a battery backup.  We bought the lift chair from a medical supply store.  She spent more time in the chair than in bed. Hers had a remote to move it up and down as well that was attached to the chair.

[matrips]

Adding- the medical stores pick the size depending on the patients height and weight.  If the chair is too big, they can’t get up out of it as safely.  Google a medical supply store and you’ll find tons of options.  I would buy from there vs a furniture store.

[matrips]

1 hour ago, LifeLovePassion said:

Does it have to be a hospital bed? Can you bring the bed he has at home or is he a fall risk and needs one? If he qualifies for hospice, they provide equipment including hospital beds. Mom used her reclining lift chair a lot. 

Once my mom needed more care and then hospice, she had to have a hospital bed.  It’s for the caretakers, not the patient.   She had her own bed while in regular assisted living, but then we had to switch it out.  I would go with a hospital bed from the start.  And talk to hospice first for their criteria.

[itsheresomewhere]

Didn’t Dawn buy her dad a power lift chair not too long ago and he was not happy.  He liked his old stinky chair. 
 

Good luck with the transition. It is hard. Parenting your parent stinks.  But you got this and I know you are doing the best for your dad. 

[LifeLovePassion]

1 minute ago, itsheresomewhere said:

Didn’t Dawn buy her dad a power lift chair not too long ago and he was not happy.  He liked his old stinky chair. 
 

Good luck with the transition. It is hard. Parenting your parent stinks.  But you got this and I know you are doing the best for your dad. 

Good point. Maybe furnish the place before he moves and then it will just be how the room is. 

[Catwoman]

Deleted this because I totally messed up my quote! 🙂 

Nothing to see here. Carry on.

Edited July 26, 2022 by Catwoman
General stupidity on my part

[Catwoman]

2 hours ago, DawnM said:

Thank you.

 and today I found out the nursing home room he is moving to is NOT furnished!  That is another stressor.   He needs a hospital bed by Tuesday, so now calls to the social worker, medicare, etc....

And he has to get his own TV service, so I need to work on that.....it never ends!

 

2 hours ago, Kassia said:

I would never have even thought about that - I'd just assume all nursing homes were furnished.  Ugh - I am so sorry about the constant issues.  😞

 

2 hours ago, Mrs Tiggywinkle said:

I feel like it’s got to be mandatory to have a generator in a nursing home but who knows(they said last night their generator only supplied “essential power” like to oxygen generators). I’d have thought all nursing homes would at least supply beds too so that shows how much I know.

I'm glad I'm not the only one who assumed that the rooms in nursing homes were furnished! My MIL was in a nursing home for a short time before she passed away, and it was beautifully furnished -- I just figured that was a standard thing (especially when you consider how much nursing homes charge!!!)

[Catwoman]

2 hours ago, Harriet Vane said:

Intriguing.

I wonder if a simple solution might be a small portable generator that Dawn or her dh knows to bring over just in case after a storm? Power outages are not necessarily frequent (though I'm sure there's regional variation), so I'd hate to miss out on the chair based on that.

You can get chairs that have battery backups in case of power failures. They just use normal batteries, too -- nothing fancy.

You can also get universal power supply backups that would allow some time to get the chair back into the right position before power was lost completely. Those are good because you can also plug a lamp into them so the room doesn't go dark all of a sudden.

[Melissa in Australia]

2 hours ago, Mrs Tiggywinkle said:

I feel like it’s got to be mandatory to have a generator in a nursing home but who knows(they said last night their generator only supplied “essential power” like to oxygen generators). I’d have thought all nursing homes would at least supply beds too so that shows how much I know.

I think it depends on the level of nursing home. My mil in Canada is in the retirement village part of the nursing home. She brought all her own furniture..  If she moves to the highest level of care than she will have a hospital bed and mattress etc. 

 Same here in Australia. 

If a person is in the final stages, bedridden, then they have a hospital bed type bed. It is more to do with the level of care and looking after staff backs