My Mother wanted to take care of her meds too. See did awesome until 2001 when she laid down for a nap, woke up thought it was morning for some reason and took more blood pressure pills. She OD'd and was in hospital for 8 days. After that the doctor asked me to please monitor all meds. Scary! So since then she has slowly aged so much over the past 12 years and slowed down. Trying to walk with a cane for a few years and last year falling a lot. Sprained her arm and bruised ribs, then it all ended in February 2013. She can't even take a step with a walker. Now she is constant care 24/7. You all are wonderful, I have been on this site for not even a week and I have learned a lot going thru your comments. I am trying to get time for me. I just think no one can take care of her the way I do. I know my problems aren't so bad now. I love you all and pray for everyone on this website. GOD knows who you all are. I think we will all be so strong after we finish our work being a caregiver. I never thought I could do this stuff. I guess I am stronger in my old age. Thanks for listening!
(0)
Report

I can't afford a professional elder care manager. They charge $100 per hour!
(1)
Report

Hey, TIller18 - this can be a tough spot. The ways around HIPAA are few - one is you go in to the doctor visit with her and talk about it whiel she is there in the room; the other is to remember there is no rule about you GIVING information to the doctor. Take a photo of the medication bottles and/or give a list of the meds she is actually taking that you get from her directly or via observations. I also suspected maybe Mom had problems, but she would insist she was dong it correctly even though she had an extra bottle or two. She had a card with the list on it that was correct. She had put my Dad back in the hospital once because she just kept giving him what she had before; she absolutelly would not use any magnifiers I got her to read anything, even important things like his new medication list, and she often did not get verbal instructions because of bad hearing and "lost" hearing aids. Giving a BP med he did not need caused hypotension and a fall, and shortly after that, she realized she could not care for him and placed him in a nursing home. She would get a van ride out to see him every week or two. But within a year, she put herself out of commission - it turned out permanently - by doubling her statin dose and giving herself rhabdomyolysis. I only found out recently from the speech therpaist who was working with her on this, that she really WAS simply taking them by the bottle lineup and not reading or checking off at all...but she swore up and down she was doing everything correctly and at that time I was not living in the same town and did not go to her appointments with her like I do now. She was actualy having the beginnings of vascular dementia and losing her judgment, which at first we did not realize...I hope your story has a happier outcome; people absolutely can harm themsevles by taking meds incorrectly.
(0)
Report

I am caring for my mom - she has mid to advanced stage Parkinson's and lives with me and my husband. I can relate to the to-do list! Another issue is that my husband works from home (I work full-time in an office) so he gets stuck with much of the day to day - and is burnt out and frustrated. There are many conflicts between them - honestly we are no longer a happy household. It's sad really - and hard to know what to do!
(1)
Report

sskape1, I know exactly how you feel! But apparently there are some financial assistance grants around. I am still learning about them. Here in CT there is a $3,500 grant with 20% copay (possibly on a sliding scale) that can be used for such things as Home Health Aids, Adult Day Care, and the like. The funds go to the service and the recipient is billed the co-pay.

As well, the Alzheimer's Association has a $500 grant - I am waiting for the application for that. And then there is something called a Title 3B grant which also goes directly to the Adult Day care. I don't know anything more about that.

It's all quite confusing because the information is not easily available in any logical or clear format so I get information from various sources (the VNA, the Alzheimer's Assoc., etc) and try to keep them separate somehow. I've probably gotten something wrong as it is.

I think there is one other but I don't know the name of it except that I think it's a state assistance for Home Care.
(0)
Report

It's easy for others to say get help but they aren't the ones who have to pay for the help. Give me the money and I will gladly get help!
(0)
Report

I am a caregiver for my mother who has brain cancer. It is so hard for me because I never would worry about planning meals or even cooking. I have never really been organized and I am losing it. I have a attendant come in every morning and I rush around to get groceries, and meds. I often forget half the stuff, even though I make a list. Does anyone have any suggestions on planning easy to make meals. How do I find time to do everything.
(0)
Report

The cost of Alzheimer care is high. Because caregivers pay for most care expenses out of pocket, they may be eligible for some tax deductions.

Deductible caregiving costs may include:

* Medical care, including nursing care
* Transportation essential to medical care
* In-home care, such as physical therapy
* Personal care items, such as disposable briefs and special foods
* Nursing home care
* Assisted living or other residential care
* Home modifications such as grab bars or wheel chair ramps

A caregiver can take federal income tax deductions only if the person with dementia has been certified as chronically ill. This certification must have been made by a licensed health care practitioner within the last 12 months.

Long-term care services must be given under a prescribed plan of care. Be sure to keep records about your payment for services, and save certifications and plans of care. For more details on deducting caregiving costs, see IRS Publication 502, Medical and Dental Expenses.
(0)
Report

Hi soleramary ~ What a great question! I have had one occasion where my husband didn't really like his physical therapist but he has very limited speech and doesn't vocalize openly so I have to be very careful to observe his other communication signals - i.e. some sign language and expressions and noises. I discuss openly all of his care and always keep close to him in allowing him to know what is being arranged and ask him for feedback. He has a 'spell sheet/chart' of the alphabet and also can spell, although his vision is so poor that even that is difficult at times. I guess I would ask him to 'try' out the caregiver and also ask him to list his main objections after trying that person out. Let him know that he just might make a new 'friend' and enjoy the experience. My husband is very open to someone helping with walking him or coming in. I am the problem because my home is 'my castle' and I tend to enjoy my privacy so I've not brought in a helper yet - but I'm getting close to deciding to do this. Best wishes to you - RSuzyJ
(0)
Report

How to you introduce a caregiver to your husband who doesn't want one? He does things he shouldn't and needs to be watched.
(0)
Report

BelleBelle, you may make special requests. I'm assuming she is a client, and they are there to serve and meet her needs. Ask for something different. You need to be her advocate. Don't be shy; ask away!
(0)
Report

My mother is in a nursing home that has glass dinner ware. It is so heavy my mother can not handle it. I have called this to their attention several times. This home is suppose to be one of the best in the area. What do I do next?
(0)
Report

RSuzy, I forgot to add that your husbands dr will prescribe a formula that goes into the feeding tube bag and is pumped in the peg tube. My mother is on Jevity 1.5. There are many kinds of formula, some for diabetics, some for high calorie intake, etc but you dr will prescribe it for him.
(0)
Report

Hi RSuzy, sorry I haven't gotten back sooner. You mentioned the peg tube and I was thinking about why your husband was getting the sores. I know that nutrition plays a part in the development of skin problems in the elderly who are bedridden, can't move about much, etc. My mother has had a peg tube since 2005. It is both a blessing and a burden. You must be careful to keep the site of the peg tube very clean and dry. The skin around the hole gets inflamed easily if you dont and can be painful. Also there are different sizes of tubing that is used depending on the size of the site. My mother is on a 24 which is just about the largest tubing available. We are presently having major problems with leakage. It is so bad that we are having to put a folded towel and a disposable pad on her stomach to keep from leakage getting on her gowns and bedding. We have finally gotten a gastroenterologist to see her. Because she has to go to a dr on a stretcher, they dont like to see her in the office. They wanted me to take her to the ER and see whichever dr was on call. I couldnt see doing that and exposing her to the flu, viruses, and Lord knows what else. Her immune system would not stand for that!! I finally had to get my son who is an attorney to call the gastro drs and explain that it appeared that my mother was being discriminated against because of her diability before they decide it would be a good idea to see her in the office. I dont think Medicare would like their rule about no stretcher patients being seen in the office! In my mothers case, the peg tube was inserted because she had been so dibilitated for months and had not been able to eat or swallow. The muscles had not been used in 5 or 6 months. She had therapy and the tube was inserted to get the nutrition she needs. RSuzyJ, you have to do what you have to do. The road isnt easy and in my case, I dont see it getting better but remember, one day at a time.
(0)
Report

God bless you, RSuzyJ. So are you, absolutely amazing, whether you realize it, or not. You're both an inspiration to me.
(1)
Report

Ginger123 you are just wonderful! Thank you for your excellent suggestions for treating a bedsore or pressure sore. I have taken my husband to our local wound care center where he has been given another prescription for the 4”x 4” gauze sponges I use to cover his pressure sore. I use Boudreaux’s Butt Paste and Neosporin for Pain Relief and apply both in the morning and mid-day. At night I leave the gauze sponge off and just apply the Neosporin. It was working quite well but then the prescription for the gauze sponges ran out just before Christmas and I couldn’t get it renewed till this week. He started getting the little red sore spot you mentioned. I took him back to the wound care center which is next to the physical therapy center where he was enjoying PT until Medicare decided he wasn’t showing the improvement level they require – i.e. he must be able to walk alone after having only a dozen sessions in physical therapy – and he hasn’t been able to do that for 4 years! The wound care center put a white paste on his pressure sore which is below the coccyx on the right side – the side he leans towards. He’ll develop a kind of rough scab and it will seem to be healing and be fine for awhile, but if something changes, it begins to form the little red spots and starts getting more welts again. So I know what you are saying. The weird thing is that he has been without full mobility for over 5 years and only began developing the pressure sore in 2008. I have tried so hard to figure out what has changed. He has been sitting about the same amount since 2006 and had no problems till 2008. Now, walking with him with his walker is getting difficult for me so I must start looking for someone to help me. His otolaryngologist is suggesting I look into a peg tube to help with his nutrition as he has problems swallowing and I feed him most of the time. He doesn’t choke but his tongue gets stuck at the back of his mouth and he’ll just sit there for a long time if no one helps it move. This disease is so weird because it affects all movement from eyelids to swallowing to muscle movement in arms and legs. I will look for the Carrasyn ointment. I’ll also ask about the Duraderm patch. What kinds of liquids do you use with the peg tube? How difficult is the process and how often do you use it? I agree, just knowing we are all out here doing our best and sometimes, even when it seems our “worst”, knowing we can share and exchange help makes it so much better! Thank you again. RSuzyJ
(0)
Report

Ginger123, you are remarkable and to be commended for such diligent care of your mother. Avoiding bedsores is not an easy thing. Your mother is blessed to have you in her life. Reading your reply above is a ray of sunshine. Kudos for being an outstanding caregiver! Proud of you. Hugs.
(0)
Report

Thank you all for responding to my comments. It helps to know that there are really those out there that do relate to my situation. Sometimes I think that I just cant do this another day. Then the day comes and things are better. It is a merry-go-round and sometimes I want to get off. Getting help is hard to do and expensive. Because she requires special care because of the peg tube and being bedridden most "sitters" are not qualified to stay with her for any length of time. RSuzyJ I have had my mother for nearly six years in this condition and she has never had a bed sore but I watch carefully for that. If her skin starts to turn red in one spot or look irritated, I use an ointment called Carrasyn. You can get it a drug store without a prescription. It is sort of expensive but it doesnt take much. Also there is a rubber-like patch that the home health agency gives me called Duraderm. You can cut it to fit the size of the area that is inflamed and it just sticks to the skin but doesnt pull the skin or anything. You leave it on for a few days at the time. If the area that is the problem is on the bottom, there is a diaper rash ointment made by Dollar General stores that is excellent. I have tried all the major brands and the Dollar General brand is the best and is less expensive. It goes on well, stays on and doesnt require a lot of scrubbing of the area to wash if off. You all have my prayers and support. If we just have each other to talk to it helps.
(0)
Report

You are ALL so brave! Ginger123 I really can identify with this because the doctors have told us that my husband will need a "peg tube" soon as his swallowing will worsen with his PSP. I think this is the same as a 'feeding tube'. I will learn more as we go along but he is still eating salads, fruits and veggies and getting good nutrition and I am procrastinating anything more than is necessary. I am also dealing with his ongoing pressure sore which gets better then worse then better, etc. He isn't bedridden, but I know with any form of Parkinson's disease, that it is a matter of time. I am optimistic as to my abilities for the most part now, however, I am considering having helpers come to help with part-time care soon and also people to help him walk with his walker. A big issue for me is privacy. Because we live in a small RV and I am a very private person, I am not yet comfortable with someone coming in and sharing our space. Only time will tell. I certainly can identify with everyone's issues about nursing home vs home care. We all seem to be dealing with this. Hugs to All! RSuzyJ
(0)
Report

Does anyone know of an insurance co that will give policy to 71 yr old 3 years post stroke life insurance
(0)
Report

I can relate to each of you. My 86 yo grandmother lives with me and my family. (RSuzyJ... I understand your desire to have more of us recognized. There's more us of out here who are taking care of someone other than an elderly parent.) We have two young girls who are elementary school aged. So my responsibilities are split... no time for myself.

Tiller18... Since your mother is not taking her meds as prescribed, she is putting her health at risk. She is living with you and you are her caregiver, so that should give you the right to take those meds from her. I had to do that with my grandmother. If you have to, go to an attorney to see the possibility of having a court appointed power of attorney at least over her medical condition. If the doctor will not give you her list of medications, how are you supposed to be able to properly care for her... especially if you have to take her to the ER for any reason.

Ginger123.... I know the desire you have to care for you mother. But, you have to take time to care for yourself. You must. If you don't take care of yourself, you cannot take care of her properly. If that means having nurses come in a few times a week to give you time off, then do it. Like someone else said, a nursing home is an option that is not an easy choice but it is an option. You can always go in to help her with her meals, bath, etc. Just know that if you chose this option, it IS okay. My grandmother knows that I will take care of her as long as I can; but if her care ever exceeds what I am capable of (especially since I do have two girls at home) that we will select a nursing home for her.... and she's okay with that.

I think as caregivers, we want to take care of everyone else and forget about ourselves. We cannot do that, or we will eventually be the one being taken care of and not the other way around.
(1)
Report

Wow, ginger123.................I feel for you. My dad needed that type of care 10 years ago (when I was younger & in better shape) and I just couldn't swing caring for him at home. We chose the nursing home route and it was SO hard. But, I had no one here that could have assisted with 2 person transfers & moves in bed.

Can't imagine how you're coping. Your comment made me really appreciate my situation, that is for sure!

Take care!
(0)
Report

These articles are interesting but dont really help with the situation I and some of you have. My Mother is bedridden, on a feeding tube, cant see or hear well and is just lying there. She can do nothing for herself so there is no way that I have time to take care of myself or anyone but her. Even my dog is suffering for attention!! I dont regret my decision to keep her at home because I know she is getting better care with me but it is exhausting and not for everyone. Some days I handle it better than others. I just have to take one day at a time.
(3)
Report

When you say "Elderly Parents", please remember all of us who are caregiving for spouses, children, etc. who have many of the same needs and demands along with variations in disease or conditions. In my case it's my 'elderly spouse'. Thank you. RSuzyJ
(4)
Report

Dear contrary1, can relate. You're not alone in that... Please remember to take care of you, too, along the way. Best wishes!
(2)
Report

I've moved in with my 87 yo mom...........going on 3 years together now. And, I'm barely keeping up with the ongoing TO DO list.

Still have some of my own responsibilities to keep up with too, although many of them are falling by the wayside, as moms list seems to be the main focus.

Each day brings something new that needs to be added to the list and I don't see me getting caught up in this lifetime.

Who knew this stage of my life was going to be this complicated?
(3)
Report

While I appreciate these tips, even finding the time to read them feels like added stress in our lives. We are embroiled in legal issues, helping care for three incapacitated elders, and trying to raise and educate a young child. So many concerns, and too little time to manage and arrange everything! Thank goodness we have help and some of these things aren't issues! And we're thankful for a Caregiving site to vent on. Will read the above article in its entirety when the demands of the present time have eased. (As my dear old Dad would say, "About a few years from next January...") LOL
(0)
Report

I just found out that my mom is no longer able to take her medication as prescribed. She saves the old meds and continues to take them. I believe she is taking 3 blood pressure meds. What can I do. She wants full control of her meds etc. I really need the Dr. to give me a list of her meds. When I went to his office the nurse said that I was not on the list to receive this info. My mother does not want to give me power of attorney. I am her daughter and she lives with me.
(3)
Report

Subscribe to
Our Newsletter