He managed to take care of himself while I was at work for seven years. But once I retired nine years ago, I have been caring for him on my own. No family, friends long gone, professionals seem to be too expensive. How long can this go on? I've started screaming at him.
It just won't end. I'm nearly 30 and I'll never get my 20s back.
She should be in one of those mefical marvels books as the woman with the slowest healing ankle injury in the history of the world.
Dementia--that slow slide into senescence--can be brutally long and slowly eat you up as a CG.
An autoimmune disease can exhaust you also, as it does not really 'kill' the person who has it--but can last for many years. (apologies for the sweeping statement there) My great uncle was in a wheelchair for 50+ years and his wife worked FT, but when she was home, she was the primary CG. At the time, I thought nothing of it. I cleaned their house and helped Uncle Webb with meals, occasionally, but it was his wife who stood by his side for oh, so long.
Don't forget mental health issues! Those can be brutal, as the tx for them is not so simple as taking an antibiotic. I have GAD and my DH is sick.to.death. of my 'mood swings'. Actually, I am VERY functional, but I know when I am having a quiet day, he is much, much happier. He's never ONCE said "I'm sorry you have such a hard time with the depression/anxiety". He just leaves. He can't fix me, and I will probably struggle forever with this. He has zero patience with me.
There's no timeframe on any illness.
I try to take better care of myself so I can be of help to others. Every time my DH has had a health issue, I am right there. Just because he's unable to support me, doesn't mean I won't take care of him.
Life ain't fair. Far from it. As long as we recharge our own batteries, whatever that takes, we hopefully won't crash and burn.
Area Agency on Aging and the Ombudsmen in your area will have some resources. You can also call your local Dept of Economic Security. A hospital in your area will probably have some groups where you can meet other caregivers, find like-minded people to chat or go for lunch after the meeting.
Please try those agencies and call Adult Protective Services and scream for help. I did at the beginning. Aps came over to evaluate my Dad. The two people who came over, a man and woman, both said I was doing a remarkable job. House and Dad were tip top.....I wasn't so great. They saw that and got me some help. Panic attacks started and I still have them every once in a while. Godspeed.
My dearest friend died 5 years ago from basically Lupus and Scleroderma.
I don't care who you are you would've loved her. If you walked into a room of 10 strangers with Kim as one of the strangers you'd immediately know that she was trustworthy, very likable, who's first inclination (from her ever sparkly smiling eyes) was always ready for good fun, the funny side of things in a kind way and with the most unoffensive of intentions. Friends and strangers would see straight away a natural gentle upbeat nature in her eyes and face. You'd never know that she was dying. What I'm getting at…this was the middle child and only jewel of her mom who not only also had a severely autistic 54 year old son in a group home but also a 44 year old son to this day still living at home. On her death bed Kim asked me to keep in touch and be a friend to her mom. Her mom is 82.
This is so not about me, but because you ask how long can this go on.
For my friend's mom who has one kidney, has difficulty walking and suffers many thing including Lupus, it's been about 55 years.
I know this doesn't help you. And really it doesn't help me, I'm myopic and I'm a human being and compare my life sometimes to the poor souls in Dracula's dungeon. Daily it's all I can do to keep myself from cursing my every f'ing day, and I'm not going to say… "Oh but just thinking about my Kim's surprisingly cheerful mom so helps me". Nah, but, I don't know, I'm in great admiration. I'm grateful for her happy to see me smiles with eyes that bore into mine and I may be wrong but I read from those eyes there is a great chance to become your greatest self. This is not about who you are right now. This woman has a profound, not pitiful, to the bone kindness. Her solice is religion. I'm very not religious and could never be persuaded but her nature is a tonic. I am not at all magically transformed by that those moments with her, in person and on the phone. It's still a massive hardship. I still dislike this life. But after this 15 year episode I've attain a view point that has, made me a type of person, I hope a better person, that I would not have been without this experience, without meeting the fellow caregivers in my weekly support group and without Kim and her mom.
Im so sorry for all of you who have mean, disrespectful family members. It falls on one person usually and the others are not at all concerned or bothered about helping. I actually sign is as "niece" because I am hiding from the nasty family members in my life. My brother is now living in my parents house. He talked my Mother into selling him the house for $5. It is already in a living trust for his kid and his wife's kid. I've never met her. I told both sister and brother to take the house and everything in it and shove it. I had 17 years with my Dad and after my Mom passed neither of them even called him! So....yup. 17 years. I wish you peace and grace in abundance.
Stop thinking in terms of “how many more years”. It’ll just overwhelm you and we both know you don’t have a crystal ball, so things could end tomorrow for all you know.
Make some calls to local agencies (you may need to start nationally) like Center for Aging. See what your options are for affordable home help or daycare in your area. You need time for yourself. I know it’s next to impossible to be patient with someone with dementia, however screaming at your loved one won’t help. It’ll just make you feel worse while your loved one may not even notice being yelled at.
Start looking into support and options. Good luck! Keep us posted.
Have you looked into what he would qualify for with Medicaid? Daycare? In home care so you can get away for several hours a day? Long term care placement? I would make an appointment just to see what is available.
I know how you feel, believe me! I do pretty much whatever needs to be done around here. We can't afford to pay for lawn care, so I do it. I do the driving, shopping, etc. There are days I get "snappy" with him because of one thing or another. He will not accept home health coming in and staying with him while I go out. Respite care? No, he wouldn't go for being left somewhere, or even someone staying here while I go away for a few days. Not at this point anyway. So I go to the garden, I get away for maybe an hour or so running errands. That's my "respite."
Alzheimer's Disease has a life expectancy anywhere from 4 to 20 yrs. Other health conditions will of course effect this.
Most dementia types are progressive but will differ in severity & speed through various stages.
One caregiver can only go so far. Then a bigger team is needed. Either provided in home or by a team in a care home.
The time is coming where you reassess how you live. How you will obtain more care for him, whether your current home will still be suitable, if not, where he would go, then whether you would stay or move.
Before all those bigger decisions, first, how to get some help NOW. Can a day-aide be hired, 1-2 afternoons a week? For regular time off. Could he move into care for 'respite care' for 2 weeks? Give you a one-off break.
So many want to avoid getting 'strangers' in or ever considering a 'home'. I get it. Involving others is a hard step. But what's the alternative? You wear out 😞
If you don't wish to change what you are doing right now, at least consider an emergency plan in case you get ill.
You don't mention it in your post, but in your profile you say that your husband has Alzheimer's/dementia. Depending on what kind of dementia he has could determine how long it could go on. One of the gentlemen in my caregivers support group has been caring for his wife with Alzheimer's for going on 19 years now. 5 1/2 of those years she has been in a memory care facility, and has been in the final stage for quite some time now.
And my husband who was diagnosed with vascular dementia in July 2018, died in Sept. 2020 from it. However my husband had had a massive stroke in 1996, so technically I cared for him for 24 1/2 years. So you can see the time range can vary from person to person and from the different dementias, so it's very important that you're taking care of yourself so you can be there for him in whatever way that looks like.
Does your city have any Adult Day Care Centers? I would start there and see if you can bring him there at least 2 days a week if not more, so you can get a break and get done what you need to, and even take time to do some fun things you enjoy. You can leave him there up to 8 hours at a time, and they feed him and provide entertainment of varied kinds.
I would also "Google" to see if your area has any caregiver support groups either in person or on Zoom. They were a Godsend for me while I was caring for my husband and I still attend to now try and help others in the throes of things.
The fact that you're now screaming at him should let you know that something has to change as that is a sign of burnout. You MUST either bring in some outside help, or start looking into placing him in the appropriate facility.
And instead of screaming at him perhaps try going outside on your back porch or patio and screaming instead. That will allow you to blow off some steam while not taking it out on your husband who can't help himself.
It's hard this I know. I hollered at my husband several times, and I know that everyone who has cared for a loved one for any length of time has done so too(if they're honest)so don't beat yourself up over it, just start taking the baby steps needed to change the way you're doing things as you can't keep on like this for much longer, or it will be you who is needing to be cared for or dead, as caregivers have a 63% higher mortality rate than non caregivers.
If your husband is a Veteran they offer some assistance too.
I hope that you can get things figured out sooner than later and that you will be able to take some time to do the things that bring you joy.
God bless you.
Oh and by the way there's a big difference between a caretaker and and a caregiver. I'm just saying.
For you, may be time to place him. You are definitely burned out.
First, you need to see an Elder lawyer about having you assets split. There are some retirement funds that Medicaid cannot touch. Your husbands split of the assets will go towards his care in a NH when they are gone, you apply for Medicaid. You then become the Community Spouse. You will remain in the home and be allowed one car. Your monthly income will be looked at and you will get some or all of it depending on what you need to live on.
Once you get that all worked out, you can place your husband. It will be easier to find a place if you pay privately, even for a few months. I started Moms application in April. She had 20k. I placed her May 1st and she paid May and June. My State gives u 90 days from application to spend down, get info needed and find a place for the recipient. In June I confirmed Medicaid had all info needed and July 1st Moms Medicaid started.