Recently I heard from Sarah, an old friend, about a hard situation she's in that I'm sure many Caring.com readers can relate to. Sarah's mother-in-law moved in with her and her family more than a year ago, and since then Sarah's had a really hard time dealing with her husband's siblings, who aren't helping out as much as they promised.
But what Sarah's finding even more stressful is that the expense -- both in direct costs and in time lost from work -- of having an elderly person join the household is much greater than she expected. And what really galls her? No one else in the family seems motivated to chip in. "This summer it really got to me," Sarah told me. "We were stuck here in the Midwest heat, working ourselves to the bone keeping up with our jobs and caring for mom, while my husband's sister's family went to the Bahamas, and his brother and his wife spent weeks at their lake cabin. They didn't invite their mom to join them, and it never occurred to them that we could use a vacation too."
The problem is, it's much harder to get situations like this straightened out after the fact, after expectations have gelled and things have settled into a routine. So here are some suggestions culled from elder planning experts for how to set up a working financial arrangement with siblings before your parent or other family member makes the move.
calmly addresses a thorny problem.
Just a word of caution that if you are "paying yourself" to provide care to your loved one, this expense could very likely disqualify/penalize your parent for Medicaid eligibility, should the need arise to apply for Medicaid Payment and long term care. Be sure to keep a log of every penny spent and receipts wherever possible. It would be wise and well advised to seek counsel from an attorney who specializes in elder law. It is also advisable to ensure that Power of Attorney and Health Care Proxy documents are in order to avoid issues down the road.
@Home Caregiver Here is a variety of information with guidance on sibling relationships: http://www.caring.com/search?query=sibling+relationships. You can also get questions answered in Ask & Answer: http://www.caring.com/ask.
Great tips. Also, there is a cost calculator located at www.makewayformom.com that addresses all of these issues. it surveys you on all the costs involved and then will give you a detailed comparison of the costs associated with moving mom in to your home vs. moving mom into a facility.
That all sounds very reasonable but what if,as in my case,my sibling refuses to do anything and refuses to contribute financially. He says if I can not deal with it then put her,our mother,in a nursing home. This is exactly what neither my mother or I want and he knows that. God willing Mom will live with me until she dies. What now????
my dad's been with us for about 7 months now and I can attest to the "hidden" costs. LOTS of time spent at doctor's offices - that's become a real source of frustration - we spend 3 hours to see the doctor for 10 minutes. My time is valuable too. My dad keeps telling me to charge him a monthly fee but I know he's thinking something like 150.00 when the costs are much higher and I don't want him to feel like he can't afford to be here. My brother, who lives in another state, is good about calling and staying informed on what's happening. We're going for a visit next month and I'll bring a copy of this article with me so we can have a chat about finances and future plans.
The article lays out the specifics, eleviating some of the guilt. Our parents raised us (some well, some not so well); some of our parents don't have income (due to their bad choices), some of us don't have siblings to share the burden with . . . still, it was informative to read and relize that we are not alone in this.
This article is exactly right! My mom has LBD and we had an addition built for her to move into my house bc her assisted living was costing @ $7,000/month. She had set aside some money for her care, but she figured she would only be sick a year or two before she died. Nobody was prepared for dementia. Anyhow, we used her money to build the addition and my siblings thought it was wrong for us to do so. We were also stressed out with the additional utilities and I had to take time off work for medical appointments and when her caregiver was not available. My siblings just don't get it so I had an estate lawyer draw up a contract between my mother and I. I am sure they will balk at it, but I have POA so they will just have to live with it. Despite all the hardships my family has had to endure (loss of privacy, freedom, less income, etc.) I do not regret having my mom home with me. She was languishing at Sunrise. Since she has been home she hasn't had to be hospitalized once and she's been with us almost a year now. Her quality of life is greatly improved and she is happy. I have hired a wonderful caregiver for her and I don't have any anxiety over whether or not she is being taken care of. Nope, no regrets at all.
Hugs The Caregiver's Voice
The tips in this article are helpful today as they were a year ago. The important thing is to take time to read them, understand them, digest them. Oftentimes, we are thrust into caregiving. We need to act...NOW. Yet, taking time to understand these tips NOW will prevent heartache and even greater struggle among siblings later. I know. It's been 14 years since my siblings and I have communicated--sad. Details in "Where's my shoes?" My Father's Walk through Alzheimer's http://www.thecaregiversvoice.com/products-services/tcv-books/
I must say caregiving is a difficult, stressful yet a rewarding position. It will certainly cost more than initially expected, as it takes from one financially, emotionally, socially, spiritually and can easily tear up a family, cause health issues and alienate one. Our family had issues, you could say rather "dysfunctional," prior to my mother's stroke over 20 years ago now. Mom and I were never particularly close, though I know she loved all of her children; even so, I was not one of her favorites while growing up. I have been the one who has been in charge of her care, and have been disappointed to the point of devastation at times at the lack of support I received from my siblings. I had to finally come to grips with the facts and quit fighting it, quit resenting them and stop expecting anything more than they are willing to devote. Once I decided I was on my own and would receive little more than criticism and accusations from the others, I had to look at why I am choosing to continue and feel it more of an honor than a punishment. Don't think mother and I don't have our moments, she has caused much frustration, hurt and disappointment at times, where I thought I would never be able to forgive her. But when I look at her life and what she has had to go through, I do feel that all in all she has proven to be tougher than I would ever have imagined. My siblings love my mother, I am sure, in their own way, and just can't deal with the changes her disability has caused her and are probably afraid of what the future holds for them. They go on cruises, fun trips, buy whatever they desire while I struggle financially and emotionally, then criticize me if I can't make ends meet from my small retirement check, after going through a good-sized savings, giving up my job, friends, homeowner status and living paycheck to paycheck. When convenient for them, they will stop by and take mom to lunch or visit for an hour or so, then back to their lives. I still have a difficult time understanding how my sister, especially, can be so self-centered and uncaring, but that is really nothing new for her; it is just so much more obvious now. Though it hurts more than I can express, I feel good for the most part that I am able to care for mom, and can spend time with her during her last years. Even with the bad times, we have a lot of special talks and experiences that I wouldn't give up for anything. If I had my job back and another family member were to be in a caregiving role, I can't imagine breezing in to tell them about my latest holiday and breeze out before I had to hear their depressing stories or news. I am happy that I have feelings and a helping nature, and don't have to avoid anybody or anything out of guilt. I know there are all kinds of people, and many feel no desire to help those less fortunate and still feel entitled to any perks than they would get if they did. It never ceases to amaze me, but all I can hope is that something like what happened to my mother does not happen to them. They could never accept a disability like my mother has done. Oh yes, and my second sister has done--since birth has had severe Cerebral Palsy--and guess who is the only sibling who visits her and takes her out whenever possible? How did you guess--even though she is 5 miles from my one sister and 65 miles from me! She is developmentally disabled, unable to speak and in a wheelchair, but has the best attitude, is the most loving and beautiful person I have had the pleasure to know. Go figure . . .. Let go of the resentments if it will keep you sane; we can all be grateful for who we are and what we have. I would much rather have my values than my siblings' any day of the week. I would like to have my own life, too, but one cannot have everything!
I must say caregiving is a difficult, stressful yet a rewarding position. It will certainly cost more than initially expected, as it takes from one financially, emotionally, socially, spiritually and can easily tear up a family, cause health issues and alienate one. Our family had issues, you could say rather "dysfunctional," prior to my mother's stroke over 20 years ago now. Mom and I were never particularly close, though I know she loved all of her children; even so, I was not one of her favorites while growing up. I have been the one who has been in charge of her care, and have been disappointed to the point of devastation at times at the lack of support I received from my siblings. I had to finally come to grips with the facts and quit fighting it, quit resenting them and stop expecting anything more than they are willing to devote. Once I decided I was on my own and would receive little more than criticism and accusations from the others, I had to look at why I am choosing to continue and feel it more of an honor than a punishment. Don't think mother and I don't have our moments, she has caused much frustration, hurt and disappointment at times, where I thought I would never be able to forgive her. But when I look at her life and what she has had to go through, I do feel that all in all she has proven to be tougher than I would ever have imagined. My siblings love my mother, I am sure, in their own way, and just can't deal with the changes her disability has caused her and are probably afraid of what the future holds for them. They go on cruises, fun trips, buy whatever they desire while I struggle financially and emotionally, then criticize me if I can't make ends meet from my small retirement check, after going through a good-sized savings, giving up my job, friends, homeowner status and living paycheck to paycheck. When convenient for them, they will stop by and take mom to lunch or visit for an hour or so, then back to their lives. I still have a difficult time understanding how my sister, especially, can be so self-centered and uncaring, but that is really nothing new for her; it is just so much more obvious now. Though it hurts more than I can express, I feel good for the most part that I am able to care for mom, and can spend time with her during her last years. Even with the bad times, we have a lot of special talks and experiences that I wouldn't give up for anything. If I had my job back and another family member were to be in a caregiving role, I can't imagine breezing in to tell them about my latest holiday and breeze out before I had to hear their depressing stories or news. I am happy that I have feelings and a helping nature, and don't have to avoid anybody or anything out of guilt. I know there are all kinds of people, and many feel no desire to help those less fortunate and still feel entitled to any perks than they would get if they did. It never ceases to amaze me, but all I can hope is that something like what happened to my mother does not happen to them. They could never accept a disability like my mother has done. Oh yes, and my second sister has done--since birth has had severe Cerebral Palsy--and guess who is the only sibling who visits her and takes her out whenever possible? How did you guess--even though she is 5 miles from my one sister and 65 miles from me! She is developmentally disabled, unable to speak and in a wheelchair, but has the best attitude, is the most loving and beautiful person I have had the pleasure to know. Go figure . . .. Let go of the resentments if it will keep you sane; we can all be grateful for who we are and what we have. I would much rather have my values than my siblings' any day of the week. I would like to have my own life, too, but one cannot have everything!
You are in a tough spot! You do need to know their exact financial situation to see if there is any assistance they may qualify for or if they were a verteran, there is an aid and assistance program for them. Nursing homes especially for Alzheimer's patients are very costly and assisted living places are pretty much private pay, too, as far as I've been told. Unless your parent has "spent down" to a minimal savings amount, they can't get help from Medicaid/Medical or similar programs. Speaking from experience, caregiving for an elderly parent in your home is extremely stressful and should be well thought out. My husband is an only child and we cared for his 88 year old mom for 4 years in our home. I could write a book on on the problems that occured and the many stresses involved. We just moved her to a residential board & care home a few months ago, since she now needs around the clock care. As a child you do want to be involved with your parent's care and help them, but you need to do a lot of research and have some serious talks with those involved. It is a hard struggle as we feel obligated but you do have to "look on both sides" and you need to consider your feelings, too...you are not being selfish! It may cost a good amount of money but if they can be in a assisted living environment with similar seniors, with compassionate, 24 hr. caregivers overseeing their needs, they may thrive better and be happier. Just my thoughts...if you want more insight, let me know, but I would try to find an alternate living arrangement (besides your home) and don't let others "guilt" you. I know this is a very stressful time for you! There are some resources out there, but I had to really dig around. Try joining a caregiver's support group and seek out geriatric specialists or other eldercare counselors. This site has some great Q & As plus very good advice from their experts!
Have you tried the Caregiver Notebook from the Alzheimer's Association? Also, in our county we have a 211 website with health care info and links. Do you have one in your area? The nursing home where my MIL used to live had a special security wing for Alzheimer's patients. They wander and there are liability issues if they wander off and get hurt.
Hellooooo ? What if you're an only child? I am being pressured by the 'healthy' 88 year old parent to care for an ill, fragile, Alzheimer's patient who is also 88, in my home. I am trying to convince them that the nursing care costs would be so much more than the costs of a higher care assisted living arrangement. Does anyone know of any resources for financial/cost data that I could refer to? The emotional stress of trying to keep an ill parent OUT of my home, where they would be isolated and less served, while requiring much more in terms of attention and lifestyle sacrifices from all family members is exhausting me. Please comment.