As caregivers, there are many different reasons for why we care for our loved ones (esp those with dementia) at home. One primary reason is money. I am curious about the other reasons that make people decide to care for their loved ones at home. I would love to hear from everyone.
My son helped with the caring of my dad. I spent days at my dad's house and my son spent nights. I know I could not have taken care of my dad without my son's help.
He died at home with hospice care after a devastating stroke with his all family being there.
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We chose the this last one because the rehab had a very good re[utation and I certainly was under the impression that rehab and LTC patients were not mixed together. No way no how not true. Mostly you couldn't tell tother from which. Never did discover which hubby's room mate was because he did not utter a word unless his visitors came.
Don't try and do it alone but if somehow you can manage let Mom and Dad stay home.
We are truly blessed because elest daughter has purchased a house for us to live in and is orchestrating the move and will be arranging what ever help we need going forward. Both daughters came and did the great downsizing which started out being very stressful and depressing but by the second day I just let them get on with it. I figured that if they had tossed something out that I really wanted I could easily get another one. Second day there were three extra helpers so I could not watch everyone or check everything that was going into the dumpster. Same with the arrival we will be whisked to DD's house by #2 DD before the movers arrive and stay there a few days till the unpacking is finished and the house arranged. i wonder when we will be allowed to see the house? We did approve it from the pictures and DD is very fussy so i know it will be very nice. We are just so blessed. Just goes to show if you give them a good eductions ad they become successful you more than reap your rewards.
I don't believe she knows specifically who I am, but her face lights up when I enter the room. She calls "mama" when she wants me.
Talk about making the place homey there was only room for 2 beds a couple of chiars and an over bed table. It is just another N/H with PT. Don't mention the recliners I could practically see the germs crawling over them.
In the nursing home they start getting them up at 6 a.m. so they can get everyone ready for breakfast.
If you are hungry or thirsty between meals you don't have the option to pop into the kitchen for a snack.
Meals may be tasty (or not) but menus are recycled on a schedule and there is no option for spontaneous variety. (Feeling like Chinese tonight? Tacos? Breakfast for dinner? Dream on!)
Entertainment is also scheduled and repetitive so if your interests are eclectic or if your care plan (nap time/bath time) conflicts with the schedule you are out of luck.
If you are wheelchair bound you go where staff takes you and you stay there until they move you somewhere else and very likely no one ever asks your opinion about it.
If bath days are Monday and Thursday and you mess yourself on Friday you will not get an extra bath.
If you go to the hairdresser on Friday and your scheduled shampoo and bath is on Saturday guess what happens to your hairdo?
- Money (lack of to pay for facility or in-home care)
- Promise (LO begged to stay home)
- Obligated (out of love - some people feel home is where the person should be)
- Prefer to provide the care (similar to Obligated)
Reasons for not doing it would also be personal and varied. Our mother was still mobile (able to ambulate and take care of herself, although driving and, as we found out, cooking skills were gone!), and lived alone in a 55+ condo area. We were all still working and one brother does not live locally. She did not need hands-on care (and still really does not), but it was not safe to leave her alone any longer. Our problem was that she still felt she was independent, could cook and care for herself and do everything. She was refusing any kind of move and after just a few months of having someone "check" on her and ensure she took her meds from a locked dispenser, she refused to let them in. Combine dementia with macular degeneration and limited hearing, she was a disaster waiting to happen! I knew that 1) my house was not a good place for her and 2) physically I could not help her. My brothers had suggested to her that she move in with them - NOPE! When they heard the cost of the place, they almost jumped at the chance to take her in... I do not think either had the skill-set needed to care for her, and who knows how their other half would see this! Living with her, if one of them tried that, would be a challenge as well. When the non-local brother would visit, he would stay at her place. When not doing something for her, he would be pretty much ignored! Nose in magazine or paper! The last time some relatives from Canada visited, she insisted they stay (they had reserved a motel), but then told me later she could not wait for them to go! I do not think she would have been easy to live with, either in our homes or hers!
So, we did move her to a MC facility. Although it does provide activities and some socialization, which is GREAT for those in the earlier stages (she was self-isolating when at the condo, joining in less and less with neighbors and Senior Center activities.), when nothing of interest is going on, she still tends to just have her nose in a magazine. Although she sits too much, it was the same in her home and likely would be in ours. For me just the fact that she cannot wander off someplace AND has others around for any falls or injury is a relief!
As for cost - based on the rate we were paying when we had those aides coming in, it would average to about $14,600/month for 24/7 care (likely more as I am sure that nights and weekends as well as more specialized care are more expensive.) Granted, if she were in one of our homes, we probably would not need 24/7 care yet, but still, that is WAY more expensive than the place we found for her, almost double! None of us could provide in-home care where she lived (the one brother is not local, the other still working full time and I would not be able to stay as she doesn't like pets and I have cats to care for, so I would have to drive almost an hour and a half each day! *EACH way!) Her current place is about 15 minutes from where I live, so I can visit more often than I did when she lived in the condo.
There are several other considerations for not doing home care:
- Some people do not have the space in their home or LOs home
- Some people are not cut out for hands-on caregiving
- Final bonus I see is that you get to spend more quality time with the person, rather than cleaning up, providing meals (especially if they are specialized) and any/all other 'duties' one might need to provide.
Advanced Directives, a will and a spiritual directive of sorts, are something we all should have in place.
I’m just waiting on Medicaid to see if mom can be placed in assisted living.
It’s definitely not all sunshine and rainbows with parents living with you.
Most of the time it is about funds to pay for other living arrangements and sometimes it’s being overwhelmed with knowing what to do.
He got a walker as well and got better to the point I could come home at that point. we had found out with my mom that their - as in the one in ther room - bathroom's door was not wide enough to get a walker through straight but we got one of those bedside potties, plus dad wasn't really on a walker all the time like mom was for a while, but that whole stair issue that dad fell over to begin with was still an issue as well as the same number in front plus possibly a threshold in front of them, plus you don't really have "limitless" hours, you have to sleep sometime, which is fine as long as they do, which is what had just begun to happen, that dad wasn't sleeping like he had been ; I'm not sure what we would have done had it kept on but those stairs got us
If you choose to have them live with you, know that it can take a while to find caregivers that are the right fit. Expect that it will take a period of time to straighten out a schedule and also expect that people you employ will come and go. (People have babies, go back to school, and the like. One of mom's best helpers had a baby and then went back to school!
Good luck with your decision.
Eventually, she could stand and use a walker. After eight months there, I convinced her that she had to come to California with me. She needed more care than my nephew or his son could possibly provide.
Even if she could afford nursing home or assisted living, and she can't - I could never do that. I was one year away from full retirement age, so went on SS. Not unhappy about retiring!!
Fortunately, she doesn't have Alzheimer's or Dementia. But, she does have memory loss of the more recent past. Doesn't remember her accident, where she was living at the time - not more recent events - like 9 11. She does know who all of her closest relatives are and can remember her childhood really well. She is 88 yo and in great health for her age - plus I take really great care of her! Not sure what will happen if and when she gets to the point where she can't "help" with her daily care as she does now, but I will cross that bridge when I come to it!
We have so much fun with each other every day! I never realized how very funny she is. She colors in adult coloring books, reads the many magazines I buy her. We talk about family all the time. That has always been very important to us - I do a lot of genealogy work tracing our family history. I send blessings and love to all of you who are dealing with parents who are suffering from issues worse than my mom's. God bless you, whatever choices you make for the care of your loved ones! Happy Easter!
For whom are you giving care? What's the relationship like NOW...do you have your eyes wide open and the knowledge that everyone will get "worse" and require more care.
It isn't just about love and caring: it's also about practicality and finances and the strength of the family (extended and nuclear). All the stars need to align to make in home caregiving the BEST choice for your LO.
I have made no promises to my DH to care for him forever at home. I know he has no such plan for me. We have tried to establish a financial base so that ALF will be possible if necessary.
Having said that---who really knows what the future holds. We make plans, the gods laugh. I HOPE that we both live independently until we die quiet, serene deaths. Reality tells me that's not likely.
It's such a personal thing...you really have to search your heart for the answer that is right for you.
This is my husband whom I love dearly. My vows said, "better or worse, in sickness or in health."
I never promised him I would keep him at home forever, I promised I would keep him home for as long as I could. 2 years ago the hospital wanted to send him to a "swing-bed" but none that I approved of would take him so I brought him home.
I can't tell you the number of people that have told me, I saved his life. He would have died in a NH. He would have wasted away if nothing else killed him. I am in no hurry to be widowed. Even the days when he pretty much sleeps 20 hours - he's still here and content.
No, I have no help - this is a 24/7 job. I have a sister that used to do some of my shopping for me, but now her husband is terminal with Pulmonary Fibrosis and she, sadly, is discovering what it means to be a 24/7 caregiver too.
I have NO regrets with my decision and will still keep him home for as long as possible. Even when he becomes bedridden, I will just find a way to tend to him to the best of my abilities. When and if he does become bedridden, I will put him on Home Hospice. They were wonderful with my dad and I trust them to help me with my husband.
Someone before me said that you must put the other person ahead of yourself and for me this is very true.
Don't think I don't get angry or frustrated at times, but if you saw the way my DH looks at me and thanks me - you would understand better.
A good question - thank you for asking.