I write this post thoroughly exhausted and sadly coming to the realization that it is no longer feasible for me to provide full time care for two people on my own.
I love both of the people I take care of (my 84 year old husband and 29 year old developmentally disabled stepdaughter). I just can’t go on like I have been. All of my time is spent caregiving and it has affected both my mental and physical health.
I got a definitive wake up call last night when I forgot that I had boiled eggs on the stove fell asleep and woke up to a scorched pan with the electric stove still on high. (I only woke up because my husband called for me to help him use the bathroom-he didn’t smell the odor/ smoke from the scorched pan nor did I ).
At any rate I’m exhausted and worn out and really have no autonomy to have time to myself; go for a bike ride, a walk alone or other activities I would like to do. I’m often up all night or on and off throughout the night to tend to his needs.
I do not want my husband or stepdaughter to go into a facility but I’m not sure I can keep both at home.
I feel my duty is to my husband and I want him home with me. I think it would be difficult for both of us but I think placement for my stepdaughter might be appropriate at this point (once she is approved for waiver funding-which could take 6 mos to a year or more).
How should I hire home health care? I don’t know when to have them come in and we are not wealthy so I don’t know how much we can afford. In our area (Midwest) home health through an agency is $28.00 an hour. We are waiting for 16 hours to be provided by the VA but I know we really need more assistance than that.
I'm just worn out at this point and I can’t go on like this. I‘m grateful for the time with my husband and the love we share but I still would like to have the opportunity to enjoy some things in life (things he already has) and right now I just can’t. I only see my health and life declining if changes aren’t made soon.
Thank you for your suggestions.
Emma
I don't have any experience with the VA, so I'm thinking you will need to see what comes through from them but it may not hurt to start interviewing some agencies to even see if they have the qualified staffing. I'm an actual employer with employees and if you hire someone privately, that makes you an employer and required to follow the laws in terms of paying payroll taxes and anything else for your state. An agency does all the skills vetting and background checking, has subs, and is accountable for what their employees do for your LOs. If you go this route the "best" people are ones that get the most hours or best schedule. My aunts have had their Angel for 30 hours a week (part-time) consistently. Maybe you can start with getting covered for a full day so you get a complete break. Or 3 mornings a week, 4 hrs per day. Also, you can request a guy for your husband -- not just for modesty reasons but as a companion. My aunts' caregiver drives them places and plays cards with them, chats, watches tv and they love her to pieces.
I hope this info helps. I wish you much success in finding the right fit -- and soon!
contact your local nursing school and ask if there is a nursing student who would like to earn some money.
adult day care is another option but needs in person visit from you first.
what time of day stresses you the most?
for me two hours in the mornings is a huge help. Some else does the written morning routine with my mom which gives me time for me and for time to help my husband.
You are a caring soul. Usually caring people don't set appropriate boundaries while meeting the needs of others. You have needs that are not being met and that is why you are exhausted.
Start by making sure your basic needs are met. 7-8 hours of uninterrupted sleep. 3 nutritious meals while sitting down to enjoy those meals - not a quick bite while feeding others or doing other tasks. 2 liters of water-based, no caffeine beverages. 1-2 hours of time outside in the sunshine. Regular doctor and dentist appointments for yourself. If you can't get these needs met - something needs to change NOW. Usually not getting enough sleep is the hardest need to meet if you are caring for others with unusual sleep habits. If your husband wanders at night or your daughter can not sleep through the night, talk with their doctors about sleep aides.
Next come those social connections and things that bring meaning or enjoyment to life. Besides your spouse and child, you need to communicate with other people. Try Facetime, Facebook, Skype or Zoom as well as phone calls talk to (and "see") other family members and friends several times throughout the week. Carve out at least 30 minutes every day to do something you love. Try to carve out a couple of hours to get some respite every week or 2; ask family, friends, people from your faith community or paid help to care for your loved ones while you get away for a bit.
You're probably saying "sounds nice but totally unrealistic." The problem is that your situation will not change unless you make the changes. If your basic needs can not be met because you are always "caring", then you need another person(s) to help meet their needs. That is why residential facilities came into existence - to provide 24/7 care that people can not do at home. Home health care aides can come into your home to help care as well. Sometimes insurance will pay for it.
Personal note, my MIL with dementia lives in Hawaii with 2 caretakers who split day and night shifts. She refused to live with us or her other son. It is financed through her late husband's life insurance benefit and liquidating all their assets.
it is a challenge to find the right person person for you and your needs. There are agencies listed on the Web near you, perhaps your Senior center has a list, or the local hospital which usually has a social worker who knows what is available. My mother had someone from Euro American healthcare in Connecticut. I don’t know what agencies are available to you.
the woman we had for my mother, helped with bathing, dressing, errands, breakfast etc
It is not easy to find someone who fits your needs and your household personality, but keep trying. It’s worth it.
The other suggestion is that you advertise for house work or home care in your local Penny Saver or Craig’s list. This will be cheaper, but the agencies have insurance and an abundance of choices of people and if one person doesn’t fit your needs, they have more to choose from.
time to reach out.
Best wishes
Bernadette
Agencies cost a bit more and I have used in home Concierage Care. I am assuming you have no family to help even for brief relief.
Ask their primary care doctors for a social worker to help you sort out your options.
Good luck and take care of yourself.