Being a caregiver has taken a very big toll…
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I moved in with my elderly aunt who just turned 87, with very limited mobility. My fiance and I moved in with her almost 2 years now, he lost his job back in April so he's been a great help being here. My aunt can barely move around, I have to do everything although she still tries, washing her face, fixing her meals, combing her hair, bathing her, dressing her, fixing her meds, running to the doctors and trying to turn her over in bed, even getting her in bed. I'm unable to bath her because she's unable to get in and out of the tub I still try my best. She's unable to go up and down the stairs anymore and we need fixtures for her handicap. I've tried calling several organizations but I can't seem to get any help. I'm totally exhausted. I got sick in the first week of Dec. and finally went to the emergency room on the 27th and found out I only had a blood level of 4.1 ended up staying for a few days to have blood transfusions and iron put in me. The house needs work done and I just can't seem to get anything done because she's a home owner. I mean because she has her own home she can't get help being she needs it? I'm unable to work my fiance tries all he can do to help out and he's diabetic. I tried calling her insurance about getting some type of income but they told me that she should have applied for long term care before she turned 80 years old. I don't want to put her in a nursing home when she can have these things installed in her home like a ramp, a lift, safety rails, a walk in tub. anything if not all.
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Give a Hug
Jan 4, 2013
I have been doing the same as you for my mom now for 6 years, my health is also failing, i weigh 100 pounds and there is no help, just me, I don't drive either, applied for medicaid for a nursing home they said she qualified for assisted living but makes to much money to get medicaid to help but not enough money to go to an assisted living facility, I fear I may pass before she does, I also can't work to do my major depression and high axiety and even if i could, she cannot be left alone and I don't drive, I feel like you, I don't what to do, anyone have any answers?
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No, I don't have any answers. I wish I did. All I can say is GET SUPPORT, as much and as often as possible. It isn't easy, because no one is forthcoming in offering it, so I have simply taken it upon myself to call people and tell them what I need. It is surprising how willing people are to help when you present them with your scenario in a very matter-of-factly way, with no self-pity or drama. I also highly recommend therapy for all caregivers and the old bugaboo "I don't have time for it", doesn't wash, because you will be dead before them if you don't get it. It could simply mean having someone be with your loved one for a hour or two once a week or once every other week while you go out for a coffee with a friend or to the library to decompress. I care for my 89 year old mom in a nursing home and live with my 92 year old dad in his home; each day is a mixed bag as far as their moods; dad we put on Zololft because he was becoming increasingly combative, nasty and frightening to my daughter. He'd also locked us out of his house twice. The paramedics came and told him calmly that he had to realize he needed our care and that his combative behavior was detremental. 25 mg. of Zoloft and he's much better. Yes, I know jillion people out there will tell me that I'm "Using the medication as a crutch" but these are people who have never, ever had to deal with mental health issues--my family is overrun with them, from two bipolar aunts, myself a major depressive and god knows how many others in the closet, terrified people will know. Mental illness is the last stigma. There are meds and therapy out there that can help enormously. As for an aunt that is not very mobile you truly need to look into either help at home or putting her in a nursing home. It torn my heart apart to put my mom in a nursing home a year ago but there was no other way. You do what you have to do. DEMAND others help you, but do it in a matter-of-fact way, and look into assisted living, or at-home care. And may you know many bright moments! Believe it or not, guardian angels are watching out for you once you begin to take charge of your problems.
I'm sorry to say, but it's time to start looking at alternatives for aunt's care. It's all fine and good to want to install gadgets to help such as the ramp, means she is probably in a wheel chair so all entry doors must be at least 36" wide.......a lift, takes a lot of room to maneuver one of those......safety rails to keep her steady when walking, so they would be installed on every wall in every room.......a walk-in tub, they are great inventions for the elderly or others with handicaps. I'm not trying to be totally negative but sometimes the care becomes too much financially, physically, mentally and it's time to think of alternatives. You have taken care of aunt for 2 years, your health and the health of your fiance are both suffering. Aunt is not going to get better and if you continue you will not get better either without some type of intervention. If you have the financial means for gadgets, then use that money instead on home health so that someone else can do the lifting and turning and bathing. And in the meantime, call your local Adult Protective services and explain your need. You may not want to put aunt in a nursing home, but sometimes you have to think about what is best for her care. When it is too much for you to do then it's time to find a place that can give her that extra help or hire someone who can. We had to do that with my mil.....we built her a house complete with wide doors, just in case, a handicap tub, a lift chair, access to use a cane, a walker, no stairs and 2 weekly care givers and she still ended up being placed in a home because the physical care was more than I and they could continue doing. And she is doing great now. I'm feeling better but am still a huge part of her care. We may not want to do the alternative, but there comes a time when we have no choice. Good luck!
Try your county Dept. of Health and Human Resources office. They offer different programs for help and can direct you in the right direction. My heart goes out to you, because I am experiencing the same thing with my Mom. No one knows until they walk in your shoes just what you are going through. I am totally exhausted and in our house (Mom lives with us) if you set down, you automatically fall asleep. And, when you do, Mom proceeds to wake you up! With me, I set down in the recliner and I'm gone and she watches me for a little bit and then comes over and grabs my foot and says "are you OK" or "are you asleep?" My husband was setting with her until I went to the store the other day and he dozed off during a football game he was watching. What did she do? She woke him up and told him the cat needed food cause she was looking in her bowl and then tried to give him the newspaper, piece by piece and insisted he read it!! He started sending me texts and I knew the going was getting rough, so I headed back home with NO groceries. This is getting to be an "all the time" thing and the only person that she wants with her NON-stop is ME! I have just lost interest in everything, housework, laundry, bill paying, fixing myself up (because when I do she suspects that I am going somewhere and I start getting the pout and snub!) Any suggestions? I have no siblings and as far as people (organizations) to help out, that is a NO NO, they couldn't handle it either because she would aggrevate them to death wanting to know where I was or when I was coming back. I know there aren't many choices left but any suggestions would be appreciated. Losimon, I wish you the best and hope you find an answer, also. Some days I wonder how I make it from day to day from the stress. My best to you!
Shortly after my then 92 yr old aunt came to live with me, I started experiencing dizzy spells that got worse and worse until I was nauseous all the time and actually falling down. My bp went sky high and my nerves were shot -- and she's not even that hard to take care of! I did some research and found the sentence that changed my life: "Frequently caregivers die before the person they are taking care of." Wow. Also, what use would I be to my aunt if I were incapacitated or worse, dead? As a nurse, I am already familiar with the tendency to ignore our own health as we care for others. (There's a nursing book on the topic, called I'm Dying to Take Care of You). I had to do some hard thinking and what I decided was that while I love my aunt and will do everything I can for her, I am not obligated to sacrifice my life for hers. She's had her life, I've still got things I have to do. I quit working to be available for her, but I cannot quit living in order to take care of her. So. I got educated. You have to read the books that are out there -- the best one, in my opinion, is Gail Sheehey's Passages for Caregivers. She writes that we have to remember that the person we are taking care of is on the path to death, and we go with them as far as we can, but we must stay on the path of life. That idea is a game changer. I put my aunt in an adult day care 2 days a week. I do yoga daily, I go to zumba 3 times weekly. I put her in a respite care home one weekend a month (around here, South Bend, IN, that costs $125/night) where she gets bathed, nails done and I get a much needed break. You can put up with a lot for 3 weeks if you know there's a nice long indulge-yourself weekend coming up! Taking care of the elderly is not for the weak! You're going into a battle and you have to be mentally as well as physically tough. Finally, I was watching a great documentary about a horse trainer, Buck, and there was an interview with his foster mother who'd raised over 20 boys. Her philosophy,which now hangs on my refrigerator, is "Blessed are the flexible for they shall bend and not break." Evaluate the experiences of those who write on websites like this one and grab on to whatever resonates for you. But do not sacrifice your self, your life, or your health. No one is called to do that. Hugs! Margie (p.s. I'm now in my 3rd year of taking care of my aunt and we are both very happy. She has a social life and a sense of being useful and that makes things a lot easier).
There seem to be some good suggestions for you to consider...I am so sorry for your struggles. Caregiving is a huge endeavor. After multiple falls with my own mother who recently passed away, we pursued a local Hospice provider for palliative care. Many people associate Hospice with cancer or final stages of death...this is further from the truth. The Hospice was the angel I was looking for. I'm sure it has to do with the primary diagnosis...but if you ruled it out without investigating, I urge you to contact them. Their sole purpose is to help people find quality of life in their struggles with illness so that they can remain at home. My mother was extremely happy that we got them involved and loved all the attention that I was too tired to provide. In the end, after months of decline, they were there for me as well. I hope you find hope in the answers given and find encouragement for yourselves in this task.
Contact your local Council on Aging. They can give assistance in finding help...but I agree - at some point you need to consider your health and look at placing your Aunt in a nursing home. From experience with my mom, who was recently in a home for some rehab...your Aunt will need you as her advocate to make sure she gets the care and services she needs.
It is all fine and dandy to care for your elderly relative, BUT... The time will come when you will have to decide what is going to be best for your aunt and you. You will be faced with no other alternative but to have her placed in extended care. If you don't care for yourself you can't care for them. I was told by a manager of a home support company that you have to put yourself ahead of them. It sounds like your aunt should have been placed a long time ago. It is VERY true that care givers pass away sooner than those they area caring for. It is stress, anxiety, financial worries and the list goes on. It is very honourable of you for caring for her the way you have but it is time for some changes. I am also a care giver for my parents. My mother is 94 and my dad is 86. My mother is a care givers nightmare. She is difficult, bossy, nasty, demanding etc. She would give anyone an aneurysm, just trying to cope with her. My dad is different and a lot more manageable. I live out of town and travel over a 100 miles to their home once a week to do errands for them. I am letting them do as much for themselves as possible before huge changes have to be made. I am an only child and I am having health issues trying to keep up with my job, demanding parents and keeping up my own home. I have tried to explain to my mother that I am only one person and can't be at her disposal at any time she thinks I should be. She is also wheel chair confined at her own doing. But that is another story. Please get help if you are going to continue caring for your aunt or have her placed.
Dept. of Social Services in your community or church may offer some help. Was your aunt in the military or if she was married, was her husband a veteran? If so, VA could help. Have you considered Meals on Wheels? That could at least relieve you from cooking some meals, maybe save you a little time. You could call the social service department at your local hospital, they may have some suggestions. Does she have insurance that would cover some home health care? Sorry, I don't have any more suggestions for you.
Tosimons: I'm so sorry you are going through all this. I feel for you! If you're not yet ready to place your aunt in a facility, do consider asking her primary doctor for a referral for Hospice in-home care. I have them for my 92 year old husband with advanced Azheimer's, and although I am still his primary caregiver (and often feel worn out) I appreciate the feeling of having a Hospice team as a support system. The nurse visits once a week (or more often if needed), the social worker comes twice a month, and is wonderful at making suggestions and then implementing them on your behalf (for example, ordering a hospital bed to be delivered (the bed is a big help), and arranging a 5-day respite care for the patient, to give the caregiver a much needed break. Hospice provides the transportation to and from the facility, too. The respite care is available only once every 90 days, but does help restore the caregiver's perspective and energy. Another person on the team is an aide, who comes twice a week to shower my husband, and shave and dress him. I suggest that you talk to someone at a Hospice in your area. They could send someone to your home to evaluate your situation and explain their services. Please let us know if anything changes for the better for you. We care!
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