I am brand new to reaching out for support ... but I have been caring for my 85 yo grandmother in my home for 7.5 years now and I need a compassionate listening ear, so here goes! She has been mainly bedbound for the entire time, now has not left her bed for over 2.5 years due to a multitude of issues, but mainly PLS (cousin of ALS but slower progression). Her mind is still 80% there, but the body is failing her ... she is down to solely the use of R arm and head/neck movements. The help that I am able to get for her is so incredibly minimal that she cannot combat the progression of the disease at all.
Right now my main struggle is one which many of you can surely relate -- I am feeling overwhelmed and angry at the complete lack of familial support, financial assistance, and quality medical staff. She is too wealthy for government aid, yet not financially secure enough to afford some of the "hit-ya-outta-nowhere" expenses that characterize long-term illness. We HAD Hospice, but they decided she wasn't dying fast enough so they mandated her discharge. Now, I am begging a doc in the area to come see us since he is the only one who works w Medicare for house calls (even tho we are not in his business plan or service area). Praying for the best on this part!
I am just so darn frustrated that this is short-changing my intended life w my 3 tween/teen girls. I cannot take even an overnight vacation w them since her last step downward. In fact, I have compromised my salary severely to work from home. In conjunction w the economy, things have gotten so bad that I am LIVING on student loans - a practice that I find abhorrent in theory, but seemingly the only lifeline for me at the moment. Simple things like going to an orthodontist appt or out to dinner when invited by a friend req so much planning & guilt that I try to avoid it when poss ... I am starting to feel isolated. When I turn to my mother for a listening ear or perhaps a bit of guidance or <gasp!> empathy, her most typical response is, "Gosh, I hope you never talk about ME this way!"
Guess I just needed to vent. Raising children seems infinately more rewarding -- if we do a good job at parenting, they go off to live fulfilled lives and become successful in their own right; if we do a good job at caregiving, our loved one still dies. Not to say there is no positive experience, but the end result is so bizarre - like building something yet never getting to see the result of all of your diligently applied energies.
Thanks for reading and thanks in advance for your support/comments.
Hi "appleguddiechick," Thank you for sharing your caregiving challenges with our community. You're not alone.
You may consider contacting your local Area Agency on Aging to see what types of free and low-cost caregiving programs are available in your area. Search for an Agency on Aging through our Senior Care Directory here: http://www.caring.com/local/area-agency-on-aging
"The Importance of Respite for Family Caregivers" states that, "Every caregiver needs respite time if she is to last. It may be hard to think of yourself and your needs at this time, but if you don't, your life will be consumed by your duties and you will burn out. Respite (a temporary break from responsibility) is not a luxury, it is a necessity." Consider arranging help and reducing stress by employing some of these suggestions: http://www.caring.com/articles/family-caregiver-respite
Please come back often and keep us posted about your caregiving situation. We're here for you!
Sorry for your situation as it can certainly be related to. My goodness, never knew someone could be bedridden for 2 years. My mom has been there for about 3 or 4 months. We had home healthcare for a short time and PT and OT just gave up on her. Also, she cannot make it to her doctor's or lab appointments for her blood thinner level. The financial part is really a downer, too as it is hard to find myself dependent on my parents when their income is so low and I have none. Financial help is hard to find her since last time I tried to see about it their income was too low for in home nursing and just a hair too much for VA aid and assistance. The house needs so many repairs and they just cannot afford all of this stuff on top of their medical bills for their meds, supplies, transportation, etc. It is stressful and just have to take it day by day and go with a flow. Am hoping to have some luck trying to find work soon. Our neighborhood is becoming a nightmare with a lot of drugs, traffic and noise and it is becoming a very unhealthy environment.
Yes, she has been completely in bed for 2.5 years and was a 2 person lift transfer for the 2.5 years before that (bad fall broke both bones in lower leg 5 yrs ago & she never walked again). OT& PT gave up on our case as well, so it has been a slow progression to near-total paralysis. We can no longer make it to Dr. appts either, Hospice gave up on trying to get her dx approved, there is only one Dr. in our county who does house calls ... the saga never ends. Same here with the financials -- almost every professional says she should be in a facility, but of course there is no money for that (in addition to the fact that she does NOT want to go & I am trying to do the right thing for her). They are over the level of assets yet have no income to afford care. I have exhausted myself, destroyed any financial hold I may have once been gaining, incured massive student loan debt, am driving my car til the wheels fall off ... and the sacrifices just feel excessive sometimes. Our system is not supportive of caregivers and the extraordinary amount of money the system saves by not having these individuals in care facilities -- where is a feasible compromise that allows caregivers to keep their loved ones at home without corkscrewing their own lives into the ground in order to do so? I agree (hypothetically) with the sweet people who have told me for many years that I cannot possibly do this without some respite, but there is no respite for someone in my situation. No volunteer is able to care for her because they are not allowed to touch the patients and hiring someone at $22/hr with a 2 hr minimum in cash is not an option. There is just me; so here I sit, venting to the only other people who may possibly understand, and waiting for a horrible event to occur in order for my life to resume from the pause I have held it on for so many years now. Thanks for listening & sharing your trials with me.
Also, I have checked with our local Area on Aging. Seems like a great org, but they confirmed that we do not qualify for anything. They have offered church & community volunteers who will read to her or heat up canned foods, but no one who can do actual patient care - therefore, I cannot take a break except a quick run to the grocery store, pharmacy, kids' school etc...
The area on aging was nice people, but we didn't qualify for anything either and they were getting ready to run out of funds. It is hard when our breaks are few and far between and when we can't afford basics like clothes, make-up, hair color, cuts, etc. Maybe when we get a hospital bed for Mom it will help things out and make life a bit easier. I don't want to be negative. Also, the respite article mentioned above was very helpful as well.
