She can pick up apple slices to eat but not a fork. We've had 2 days of not being able to eat on her own and that's where her medication is! She's also diabetic so getting her to eat is important. But what happens when she won't eat? Arrghhh!
The worst part is that I don't have time to spend 30 minutes here and there trying to feed her, testing the waters, and if we reach the need-to-be-fed phase soon, before we can afford to place her, we're screwed. I'm homeschooling my kids for a good part of the day and mamaw doesn't get out of her chair much, but she's got to eat... I don't think she's in a worsening phase but it scares me to death. And I know she's not being manipulative and yet it sure can FEEL that way.
I feel like a crappy caregiver, but I'm just in a ticked off mood that this has fallen in my lap. She's not MY grandmother, we saw her 1-2x a year, and she wasn't my favorite person anyhow and now suddenly I'm pretty much all she's got. There, I said it. Sorry, I just had to get a little of the anger out! On to a new day, I guess. Ready to start the ridiculously long and drawn out bed routine with her and then do the same for my kids. BLAH.
Don't you think it's time for her to go into a nursing home where someone else will take over her care? No one can take care of an Alzheimer patient day in and day out for years and years, it is torture. Look into other possibilities. In a NH they will make sure she gets fed.
Oh, how I wish. Her finances were mishandled and now she is out of money AND disqualified for quite some time from Medicaid. Any ideas? LOL We're waiting for her veteran's Aid and Assistance money (no clue about how much, if anything) and it just takes forever! Even with that, I don't know that we can find a facility for the amount of income she'll receive. Not even sure we can find anything if we contribute to the costs a bit. But with 6 kids and no health benefits for US, we're really scraping by as it is and mamaw has to pay a little to help us with the utilities and food. (Not much, though.) There isn't any other family to assist, either.
On one hand, I'd be just fine if she'd progress from this stage quickly because her quality of life is fairly poor, IMO, but on the other hand, we can't afford much more in the way of home health help and it would be MORE work to care for her in a worse state.
I know that I should be thinking more about how I should make her life as good as possible for as long as she has, but right now I'm being selfish and feeling badly for me and my kids. Our lives have changed drastically and I don't want this life for my oldest children in the few years before they leave for college. It just stinks.
Thanks for listening...I'll snap out of it in a day or two! lol
Last edited by LeighAnn6; 01-13-2009 at 06:16 PM.
LeighAnn, I feel like I jumped into the middle of something and not sure what.
You say that she's not your grandmother. Then whose is she?, your husband?
I'm so confused. If its your husband's grandmother then realize when you marry the man you marry the family. You will need to accept this because your kids will someday marry and you will want their spouses to treat you with respect too right?
I'm sorry that you are in a blah state right now. You should be. You can't do everything and it seems you are trying. You need to work her eating around your school schedule with the kids.
While you say there's no money to do anything with. What would happen if your family wasn't there for her, the state would have to take her right?
You need to keep fighting and finding out information on what happens in situations like this.
Yes, she is my husband's grandmother. Sure, she's "my family" by marriage, but it's not the same as dealing with an aging parent of my own, much less a grandparent. I hope my children never have to care for their spouse's grandparents (or spouse's second cousin who is also family, right?) as a result of poor handling by their blood relatives...sorry if that's unclear but I'm not going to go into details about how things were mishandled. Yes, I'm pouting because of the unfairness of it all. But I chose this family so I guess I can't complain! Hope the grandmother's aunt's brother doesn't need care, too.
LeighAnn.... is your husband an only child? Are his parents alive. Does the parent who's mother this is have other children? Is he the last living decendent of his grandmother?
As far as the Medicaid disqualification, have you had an attorney look into the matter? Sometimes they can do what we cannot.
As for your initial question. She will get to the point that she is incapable of using utensils. It will not be for a day or two but from now on. Feed her finger foods. Apple slices, vienna sausages, meat balls, green beans, sandwiches cut into pieces, or the like. Things she can pick up and eat. You can also supplement that with liquid nutritional supplements such as Ensure. They do make one for diabetics. Later she will get to the point that she will need thickened puree food because she will lose her ability to swallow. It is not going to get any easier. What you can't do is force her to eat. It doesn't matter how much you think she needs to eat, she will eat only when she is ready. Otherwise you run the risk of not only aggitating her and making your life more difficult but also of her aspirating on the forced foods which can give her pneumonia. So for now, just give her finger food. Put her at the table and let her try to eat what she can in the way she can eat it. You might try feeding her but don't spend an hour trying to force food into her.
I do hear your frustration. I get it that you were not close to his grand mother and that makes it even more difficult. Caring for a dementia patient in your home 24/7 is as close to impossible as it comes. I will change the family dynamics and usually in the worst possible ways. Suddenly your focus is no longer on your children or your husband or yourself. It is on this lady that you really don't like anyway and that in itself is frustrating.
But it is what it is. You need to be creative about finding help. Call the local ALZ Association. One of the chapters here has volunteers that will come out and give you assitance in what care is needed and how to best handle a situation. They even have volunteers that will sit for short periods. They are always as close as the phone to give you encouragement and advice. Let Hubby stay with grandmother long enough for you to attend a support meeting. You need the support and the escape. They could also give you ideas iif there is low cost help that you can receive.
I found a wonderful guy that was recently widowed through Mom's church. He had lovingly cared for his sick wife for years before she died. After her death he was lost. I paired him up with my Mom and Dad. He was the one that brought them to the cabin the last time and also took them to Dad's sister's services. He would stop by and check on them and take them to church. It was a benefit to them all. So look for sombody that can help you.
Yes tomorrow is another day. Don't worry so about how she eats. Provide her what she can eat and then supplement it. That is the best you can do. The rest is out of your hands.
I feel your pain! I'm a homeschool mom, too, and I know how much energy it takes to do a good day's work with everyone. I'm on my last one now, thankfully, but I've been there.
My mother-in-law, who I care for, is in stage 6 of Alzheimer's. She has good days and bad days, but the kicker is that I'm her full time caregiver and she was never particularly nice to me before she had dementia. But like you, I married into her family, so now she's my family, too, and I want to do the best I can by her. She has come to appreciate me, believe it or not, but it's beyond her ability to behave in a normal way. And like you, I have not been able to qualify her for Medicaid, but she doesn't have enough money to pay for a memory care facility. So far, I've been able to handle this, but I foresee the day that I can't. It's getting harder for her to do some things for herself, and as I'm disabled myself, that's absolutely necessary if she's going to be with us.
I had an elderly aunt with dementia who my dad put in a nursing home. He told us that the nurses were laughing to him about how she would steal extra cans of Ensure from the nurses' station but she couldn't open them herself, so after she stole them, she'd take them to a nurse to open them for her. They were happy to do it, of course, as it got some nutrition into her, the little crook! Is the grandma in your home a nibbler? If you kept a cup of Ensure or some finger foods near her at regular intervals, not just at mealtimes, would she snack throughout the day in little amounts?
I wish you the best. You're got your hands very full! I hope you get a break now and then. Please do that for yourself, or you're going to quickly burn out and then where will everyone else be??? You're ministering to your whole family if you take a break for yourself!
Taking care of a Alz/Dementia person 24/7 is very difficult and draining. When I moved back ito my parent's home 4 years ago to help Dad out with Mom and all her medical issues she was at the very beginning stages of ALz now she is at stage 7. This home and the people in it has gone from what once was happy and healthy people to a home with unhealthy unhappy people in it. Mom has certainly progressed to a level where she is very bad health wise and alz/ dementia wise. The worst thing is dad and I were once very happy and healthy people who are now emotionally drained, tired out people. This is all from taking care of Mom. Dad deals with the brunt of it during the day. I still work full time just barely making it though It is very hard some days. I am very tired and drained most days that going to work is become harder and harder for me. Plus, I work in the the health care field so I am constantly around sick people so that doesn't help any.
I do try to keep up with exercise going to the gym as that keeps me grounded but I have noticed I socialize less and less with my friends I am always canceling dinner/lunch plans with people only because I am to tired from having run my feet off doing ninety nine things for mom. The worse part of this disease is they can be so difficult to deal with. Sundowning early evening is the worst. My stomach goes in knots at that time of day as I never know what to expect from Mom. It is a horrible way to live day to day but I am here to help dad through this. I have pleaded with him to put her in a facility but he refuses. He has the old bad image of NH 's from way back when people where left to just sit in there and room and waste away. no matter what I say to him I can't get him to change his mind on this. Unfortunately, He is going to die from trying to take of Mom. That is the hardest thing for me to watch.
So Leigh ann as you have learned from all the post here this Alz road is quite the journey. It takes a lot to live through it. This board has been my support. Your regular friends are good to a point but they don't want to always here the stories and nightmares of what goes on so you really need this board to help you through it. Keep coming back you will find it really helps you alot!!