My husband and I are sole caretakers for my 91-year-old mom who has respiratory failure. Up until now she has helped with standing and taking steps from bed to wheelchair or bedside toilet. As her health declines she, due to either weakness, dementia or both barely puts weight on her feet. She doesn't seem to know how to pick them up and move them. The hospice aide was explaining lifts to us today but I don't see how that will help with getting on the bed side toilet and her standing to be cleaned up. Thats my biggest and hardest issue at the moment. My husband is 71 and I am 65 and not as strong as we used to be. Does anyone have experience or advice pertaining to our situation they could share! I would appreciate it so much! Thanks!
I have the same situation with my mother. Since your mother cannot really stand and bear weight to even pivot to a wheelchair she will need mechanical assistance. This is a big change to your care situation. If you are not able or up these changes then you will need to place her in a skilled nursing facility. Assisted living facilities typically cannot take patients who can’t stand and bear weight.
If you have the financial means, and do not have the necessary home space for a hospital bed and a Hoyer lift, or the time and skill to use them, then placement in a nursing home will be your best solution. This will preserve your home life and, hopefully, give her the care she will need. You will have to carefully choose a facility and visit frequently to oversee her care and ensure she is getting proper hygiene and is getting decent nutrition.
If you can’t or don’t want to place her, then realize that her needs just became more reliant on you and much less independent. She will no longer be able to get to the bathroom for toileting or showering without substantial assistance. Any movement of her from the bed to a chair or to a commode or toilet will have to be done with a Hoyer lift. It will be easier to meet her toileting needs by getting a hospital bed and using adult diapers, learning to turn her and changing her in bed. Medicare will pay some of the cost of a hospital bed and Hoyer- you just need her Primary Care physician to write an order stating medical necessity. Bed baths will be easier than showering- especially if you can’t fit the Hoyer through your bathroom doors. You will need the Hoyer to transfer her to a chair to watch TV or to a wheelchair if you go out. You will need a wheelchair van or transportation service to go anywhere unless someone can physically lift her and put her in a car.
You will want to invest in an electric Hoyer because the manual hydraulic pump type will make your arm fall off after a while and ruin your shoulder joint. Also, I have mostly wood floors making rolling the Hoyer fairly easy. If you have a lot of carpet, it will be very hard to push. Be prepared to expect some moderate wear and damage to wood floors. When this is over I will have to refinish them.
These are the realities of dealing with a mostly bed bound patient. It can be done - but it is definitely a big change from a person who can walk to the bathroom. If possible, it is best to hire an experienced home aide for several hours a day at least five days per week. Otherwise, this level of care will burn you out fast.
I have been doing it for 4 years with my Mom. I have a private aide 5 days per week for 7 hours. I am not super-human. It can be done but it is a substantial time commitment. I am retired and the grandkids live several states away. Travel arrangements are always a big deal. But, I did not want to put my mother in a facility after seeing the neglect she suffered in a two month stay at a rehab nursing home. My experience was that they charge excessive monthly fees and do very little - with the little sometimes being harm rather than good. They are short staffed and their attention to hygiene with bed bound patients is generally poor leading to skin breakdown. Basically they leave them sitting in pee and/or poo for hours before changing them. The aides cannot hang around at feeding times to assist patients and just bring a tray to them and remove it without paying any attention to exactly what if anything the person ate or drank. No one checks on this so they can easily become dehydrated and lose weight from poor eating. So, I opted to use her $ for home care and pick up the slack myself. That was my decision based on my experience - others may have a different take.
Finding a facility with more than a three star rating is key. My mom is 97. my husband and I are older than you.
The care home he was placed in near where I live made sure that he was clean, comfortable and fed (until he could no longer swallow). Nevertheless, I wasn't overly impressed with the place, until I read comments on this site - now I realise how lucky he was.
I hope that you can manage your mum's care without compromising your own health.
Here's a link to one to see how they work. (note: if you want to use one of these to put someone into the seat of a car, do NOT get one with the back that splits apart...it will not work) https://www.wayfair.com/DENFER--Electric-Lift-Wheelchair-TL284-L1819-K~DNFE2977.html?refid=GX685106917099-DNFE2977&device=c&ptid=1391166065696&network=g&targetid=pla-1391166065696&channel=GooglePLA&ireid=261796737&fdid=1817&gad_source=1&gclid=CjwKCAjwqf20BhBwEiwAt7dtdUJoSMe2_6jYRK8boYcBkDqe8074o3wyVxeqpJAPrJLRLjl1MfCDcxoCk3QQAvD_BwE
I would ask for a Hospice evaluation and all the equipment that you would need would be provided to you through Hospice.
And you would get extra support, all the supplies you would need.
A Nurse would come 1 time a week to check on her. And the Nurse would order any medication.
A CNA would come 2 to 3 times a week and give her a bath, shower or bed bath and the CNA would order personal supplies briefs, gloves, ointments, creams...
And the Nurse would also order any equipment that you would need.
This would all be covered by Medicare or Medicaid.
Physical Therapist has him standing at the transfer pole lifting his feet and marching in place. This works most days. Good luck.
Firstly, I think that it would be better if you were no longer physically taking care of your MiL. I don't know how her general health is, but if this continues for any length of time, physically caring for such an infirm person will rob you and your husband of your own health.
You should not sacrifice your own health for that of another person.
If you are determined to continue, then your MiL will have to be bed-bound. She will need to wear incontinence pants/pads for dual incontinence. She will need to be rolled in order to change and clean her. She shouldn't be stood to get cleaned anyway, if she's frail, as she is at risk of falling. (My mum sits on the bed while the carer helps her to wash.)
Your MiL will be even more prone to bed sores, so she will need an air mattress (ones that are designed for people who rarely move) and anything else available to help prevent bed sores, which can eat away at flesh and become excruciatingly painful.
My father became paralysed in the last 5 months of his life, before which he had been very active - walking and swimming most days. He was first cared for in another country and by the time he arrived in the UK a large chunk of flesh, bigger than a man's fist, had been eaten away from his buttocks by a bed sore that had become infected. It was nearly down to the bone.
Please be aware that your MiL will be more likely to contract chest infections as well, especially pneumonia, if she is in bed and not moving. There is little you can do about this, although a hospital style bed would help to sit her up and help prevent fluid from collecting in her lungs.
So, I would recommend either having more care in to help you physically look after your MiL, or look at the possibility of her being looked after in a nursing home.
Please be aware that you can no longer meet her needs on your own - not without risk to yours and your husband's health.
It may be time for an incontinence product so she doesn't have to get out of bed.
You may need help, whether having a CNA come in to the home, or in a hospice care facility.
I, too, struggle with helping my husband out of bed, but find that helping him to stand and pivot is easier for me than getting out the hoyer lift and maneuvering that into place.
You mention that up until now, she has been able to take a few steps.
Depending on her weight, and your strength, see if you can help her to sit up on the side of the bed, and have the commode chair right up against the bed, then help her to stand and pivot just a quarter turn, then sit down again.
My husband is able to hold on around my shoulders, I grasp his waistband with one hand, and the other around his back for support, then remind him to lean forward and stand. Remember to use your legs, not your back! Bend your knees in a squat, then straighten up, pivot a quarter turn, and squat with your legs again to lower her.
If helping her to stand is hurting you or your husband - Don't Do It!
You are of no help to her if you are injured!
Get help from someone else!
You are of no help to her if you are injured!"
This cannot be repeated enough.
Sometimes, knowing when to give up and ask for help is the best thing we can do for our loved ones.
Hoyer lifts were brought up to me in caring for Mom as an option. I was a woman in my 50's who lifted weights and was pretty strong but I did not feel comfortable with the option. I talked to some personal RN friends. They were not overly encouraging. I would not have felt comfortable using a lift with a sling. It felt too dangerous. Mom had late stage alzheimers at this time.
If I was caring for a 20 year old who had a future I would have felt differently.
After pushing Mom with walking for many, many years I made the decision to keep Mom in bed.
I have no regrets.
When she could no longer stand nor take steps I made the decision to keep her in bed. This was much safer for Mom and for the caregivers. I felt like we had pushed Mom for many years and now was the time to let her rest.
See if your MIL's doctor will prescribe a Physical Therapist to come to the home to show you safe movement on all day to day activities. We found this very helpful.
Weigh the benefits of getting out of bed against hardship of using the hoist.
Eg dignity to use the bathroom, or commode, sit in a armchair, join the family in living room VS caregiver burden & risk of caregiver injury.
Other factors can be;
. Is Mother's current bedroom suitable for all care tasks? Eating, bedbathing, toileting.
. Does a hospital bed fit ok? If not, then fit in a living room?
. Is this the only living room?
. Do the other household members need their own living room space?
I have a small home. Older bathroom not suitable for commode use & no roll-in shower. While a bedroom could fit a hospital bed, hoist & armchair (just) if needed, I would need to think hard about the practicalities of providing that level of care, even with aides helping.
I think another factor is temperment. A quieter peaceful person, content to look out a window, watch TV or listen to music in their room varies tremendously to an aggitated person, anxious or fearful. Calling out, demanding company or to be entertained.
If Mom is still continent , you could ask hospice to show you how to roll her on and off a bedpan in bed . A hoyer lift just to pee on a commode is a lot of effort for you and your spouse .
Otherwise adult diapers with tabs and have hospice show you how to a change it while she’s in bed.
Eventually Mom will be bed bound when she’s not able to sit up in the wheelchair or commode any longer. It’s best you learn now how to do all her care in bed , including changing adult diapers .
But you could ask them about a gerichair instead of a wheelchair for her to sit in . I found it easier while using a hoyer lift .
If not , then maybe a wheelchair that has the reclining back . It also may be more comfortable for mom than a regular wheelchair .
Placing the sling underneath the person can be manageable for one caregiver IF person's bed mobility is good eg can roll well. Otherwise 2 x assist is needed.
To manourve the hoist, care is needed to avoid caregiver injuries. Awkward postures of pushing when twisting need to be avoided. Hoist will move easier if on flat floors (wood/lino/tile) rather than carpet. (Note this if trying a hoist in an equipment hire store).
Have a trained aide to assist morning & night for transfers into a recliner chair for the day can work (if this option is available/affordable).
You may have to diaper her, it doesn't sound like she is going to be able to get up anymore
If you have hospice I'm sure you know she is dieing. Do you have other help or support. This sounds like a lot for the 2 of you
Can you put her in a hospice center or NH .
Hope you find peace 🙏😔