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Lilylynn2u Asked February 2023

How to decide when home care with a caregiver 8 to 2, five days a week is not working?

I had hip replacement 4 months ago. Unfortunately I need to get my second hip done. I suffered in pain for 9 months prior to surgery. My only support group is my caregiver. She is awesome, but weekends are not good. I am working on finding a caregiver for at least 4 hrs a day for weekends. My husband is lost, doesn’t know me and cannot find normal household things…refrigerators microwaves, bedrooms, bathroom, etc. he has Lewy body dementia. He is very sweet, we have been married for 54 years. I am mentally and emotionally drained since any thing that he needs, when the caregiver is not here is my responsibility. I cannot walk without a walker. Luckily we have long term insurance that covers him for at least 5 years plus savings and a we own our home free and clear. Advice on how to cope?

BuffyRoberts Mar 2023
Some facilities will take in spouses who need care while the other spouse has surgery or is recovering from something.

Lymie61 Feb 2023
With many dementia patients change can be particularly difficult but if your husband isn’t one of them I would go visit MC facilities in the area, talk to them about respite care or trial care during the time you are recuperating. I know several of the places around my mother do this and then keep the awesome caregiver coming to help you while your recovering. Then you can decide if the placement for your husband is the rite thing to continue moving forward or not without loosing the caregiver in case you decide to bring him back home.

if you don’t feel like respite care for him is doable then you need to either add hours for your regular caregiver to at least 8 hrs a day and find a weekend caregiver for 8 hrs as well. I’m not really sure that enough for the first week or two you are home though. You need to be able to simply focus on yourself and your recovery for a few weeks at least. I’m curious what did you do with your husband while you had surgery the last time, while you were gone I mean? What did you do during your recovery and what was the backup plan if you needed to stay in the hospital a few days longer, what is it should something else emergent happen to you? Whatever you employed during the surgery and or your back up plan is likely something you need to use again and I strongly urge you to extend that care and go into acute rehab yourself then for recovery the first week or so. Whatever is recommended and it probably depends on your area and surgeon but often I know they ask or encourage residential rehab for major orthopedic surgery patients who live alone and I’m sure they would do that for you if they knew the responsibility you have at home.

Obviously the first hip recovery along with the care of your husband was too much since your trying to prepare differently for this second surgery and taking the best care possible of yourself is so important that you know the answer to your original question, 8-2 five times a week isn’t enough even without hip surgery. Prior to his dementia would this sweet man you married want you harming yourself to care for him, would he want you to jeopardize your recover from this surgery or make it any harder? I doubt the answer is yes to any of these questions, he was looking forward enough to get LTC insurance so you would both be well cared for in the event there was a need. Maybe it’s time to let him take care of you by letting the policy take care of him.

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Llamalover47 Feb 2023
Lilylynn2u: Perhaps your DH (Dear Husband), who unfortunately suffers from Lewy Body Dementia, requires placement in a managed care facility. This may allow you to focus on your health needs and your required second hip surgery. It is not advisable to suffer in pain for a second nine month duration.

Catskie62 Feb 2023
Sounds like you both can benefit from caregiver assistance. You'll need help after surgery. Are there any friends or family that can help out temporarily? Best of luck finding a solution. 24hr care might be needed for awhile

my2cents Feb 2023
Until you can recover from 2 surgeries, you basically need 24 hour help. Talk to insurance about 24 hr care in the home for right now since you have the long term insurance policy. It's possible, you may have to place him in NH/memory care facility until you are able to get back to your old way of taking care of him yourself.

The only other alternative I can think of is self pay home care for all of his waking hours so someone else provides his needs. I say this because you didn't mention any relatives that could come in and fill in the blanks for your current caregiver.

MargaretMcKen Feb 2023
Respite care so that you can recover after the operation sounds exactly what it was designed for. Unless you feel that the time has come for permanent placement.

ConnieCaretaker Feb 2023
Sounds like Memory Care would provide you with what you need. Please contact Elder Care Attorney for placement advice and how to fund it (including applying for Medicaid). You need to care for yourself so that you can visit him regularly.

Contact "A Place for Mom" and the care advisor here to plan visits.

AlvaDeer Feb 2023
I think you may already know, and hard a decision as it is it is YOUR decision, when it is time. It sounds to me on the face of it from your short note that it IS time, but this decision sits squarely with you.

Midkid58 Feb 2023
You asked and answered your own question.

Now is the time to get weekend help. Gettting that established will go a long ways to making it work out when you have that 2nd hip done.

Worrying about your DH when you need to focus on your own healing is too much. I wish I had hired a 3 day a week aide for when I was dealing with cancer, and then later, when I had major ankle surgery and was unable to walk for 14 weeks! I still did all the 'everything' with running a home. DH just is not wired for household chores. He just--can't. And didn't.

If someone had just been able to come in and prep meals, do a little light cleaning and make beds and run the vaccuum around--that would have been heavenly. I didn't need care, but my home DID!

You've PAID for LTC, use it. Mother spent a small fortune on LTC and never used it. 4/5 of us kids thought she could have greatly benefitted from it, but the one who had the final say, kept her from ever having outside help. When he'd complain about mom's needs, we'd remind him that she could get the care she needed and he'd back off.

This is not just for you, but for you and your DH. If you're worried about him, then you won't heal well and you need to, short term and long.

TouchMatters Feb 2023
Perhaps it is time to place your husband in a facility where you can visit.
It sounds like you do not have the psychological, emotional or physical ability to care for him / his needs, and struggling to manage your own.

Clearly, you do not have the ability to care for him as needed, for HIS safety and YOURS.

Have you discussed this with him?
Are you open to this?

I know it must be excruciatingly difficult to consider however it sounds like it is a necessary for you to cope / manage your own (quality of) life.

And, then he will get the 24/7 care he needs.

Gena / Touch Matters

FamilyNeeded Feb 2023
I think you already have the right answer ...find someone to help on weekends during this time.

If in the future you do need additional help financially to pay for the In Home Care, please look into programs that help with that. We have one here called IRIS. There should be something similar in every state.

They will help pay for not only the care, but things needed in the home. It could actually cover care for both of you, if you find you need a little assistance yourself. You decide who you want for caregivers. IRIS also allows family and live-in caregivers such as yourself. So it could help you both out financially.

God Bless you both!

ansahmatilda59 Feb 2023
1.2a: Describe your employment rights and responsibilities as a care worker
Employees also have certain expectations from their employer. They expect to get paid on time and good working condition that is free from any kind of hazardous condition. A good treatment is expected from the employer by each and every employee, and this is expected by a care worker as well. As a care worker, there are certain rights and responsibilities that they can expect from their employer. Their rights and responsibilities across different domain areas are discussed as follows:
Health and Safety
It is the right of a care worker to get proper working condition that ensures safety of their health condition. The care worker has the right to know about the health and safety in the working condition they are expected to work on. They can also participate in decisions that can have an impact on their health and safety related matters. It is the responsibility of employer to make sure that care worker get a proper working condition that is sound and safe. The working environment should not pose any major threat in the process of providing care services to the patient. Employee therefore has the right to refuse working in condition that can directly affect their health and safety.
Confidentiality
With respect to confidentiality, the care worker has the right to expect privacy of their data by their employer. It is the responsibility of employer to safeguard and protect the privacy of their worker by way of managing the data properly. The employer should not utilise the data about the care workers for their personal benefit such as selling their data to marketing companies. This implies that it is not only the care workers that need to maintain privacy with respect to clients’ data, but the employer is also required to maintain sufficient confidentiality and privacy with regards to the care workers employed.
Working Time
The care workers should not be bound or forced to work overtime, and it is the responsibility of employer to specify the working hours as applicable to an employee during a week. Care workers also have the right to request for flexible working and also the right to take unpaid time off during emergency without affecting their employment.
Pay and Wages
It is the right of care worker to get paid for the work they do. They are therefore expected to get paid as per National living wage policy applicable in the country. Care workers can also request for payment in case when the employer fails to provide any work, and the care worker is available for work. In such a situation, the care worker has the right to get paid their pay as agreed with the employer.
These are some of the important employment rights and responsibilities available to care worker. For further assistance in relation to care workers employment rights and responsibilities, contact the expert of student life Saviour for.
Matilda

AnnDylan Feb 2023
Lily you are doing so much. I admire your love and care for your husband. I'm currently caring for my Mom in our home for the last 13 months..she has some dementia, and recently fell and fractured her pelvis. She's recovering well but I'm getting so worn out attending to her all day. If you could get a local person to come in do some errands, light housekeeping, and care for your husband, this would give you a break. Check out Care.com for caregivers in your area. You can become a member for 3 months at a minimal cost. I interviewed a woman to help care for my mom, when I must be leave. I'm not using her full time because I'm one of those people...but now I do have have a backup. Good luck to you..your going to feel so much better once your done with your hip replacements.

ClairJ Feb 2023
My suggestion would be to consider a live-in caregiver. You can get one through an agency that provides that type of service. You would have to have them for consecutive days but you can decide how many. It doesn’t have to be 7 days/week. It can be 3 or 4 days for example. The fees can range between 250-350/day. If you have LTC insurance to help with the fee it might be doable. You could get respite that way. If desired you can combine that with having a second person who’s hourly that you privately hire for days the live in isn’t there.
KaleyBug Feb 2023
That was going to be my suggestion, especially just after your surgery. The live in rate is cheaper then the 24hr rate. Because 24 stays awake. The live in gets sleep time and breakfast, lunch and dinner breaks. Basically you are paying for 14 hrs of care with a live in. You could do a live in Saturday 8 am thru Monday 8am when you normal lady comes in and then find someone to fill in extra hours during the week while you heal.
ACaringDaughter Feb 2023
It sounds like you need more breaks and additional caregiving.

Hire people who are able and interested in taking your husband out of the house to provide stimulation and exercise for him and time for you to emotionally refresh/regroup in your space.

Don’t delay addressing your own health needs (get your other hip replaced as soon as possible) if you want to live under less stress.

If you must seek a higher level of care, don’t feel sad, utilizing this option may result in incredible relief and it may even extend your life.

JoAnn29 Feb 2023
Try a nursing school. Our local Community College has a nursing program. Maybe one of the students would like some extra money to help pay for school.

I agree, find a place that will take husband temporarily. You may find he acclimates well there and he can stay. LD is one of the hard ones. They can become violent and aggressive.

againx100 Feb 2023
So sorry about your husband.

How long do you have to wait to get your second hip done? At that point, you should try to go to rehab and have hubby go somewhere for respite care so you can get the care you need. Even if you come straight home, still put him in respite care so you can recover.

Find yourself a weekend helper ASAP. Do you have any leads? Does your caregiver? They often have friends in the business too. I don't really think that 4 hours a day is enough on the weekends. This is a LOT on you and you are not in the physical condition to be able to currently handle it. Emotionally it's very difficult too so more help is better.

Have you thought about the two of you going into assisted living? You could at least have some support - meals, cleaning, laundry, etc.

NeedHelpWithMom Feb 2023
Oh my gosh, I feel for you. I don’t know how you are managing to care for yourself and your husband. I hope that you are able to find additional help.

It’s obvious how much you love him but you have to take care of yourself too.

Please consider placing your husband in a facility so you can heal properly. Some facilities offer respite care. This would be a good way to see if this is the best fit for him in the long run.

Best wishes to you and your husband. Take care.

BarbBrooklyn Feb 2023
Lily, welcome!

It seems pretty clear to me that you need to place your husband at least temporarily in Memory Care while you recover.

Can you get your doctor to recommend a rehab stay for your second hip?

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