# Advice on aging "parent"?



## Jill in Mich (Feb 24, 2008)

I'm looking for some advice.....

After Deb was diagnosed with cancer, and knowing that she would probably die first, we convinced Deb's mother to sell her house and move into a senior community - which she did last June. She has a very nice two bedroom apartment with a full kitchen but takes all of her meals in the dining room. Since Deb's death, Virginia (Deb's mom) has declined rapidly. She has been to the emergency room 7 times in 7 months - usually on the monthly anniversary. (It's been really awful having to return so frequently to the emergency room/hospital where Deb died so recently. Of course, most of the hospital staff know me by name - I think many people think I work there.) They took her by ambulance twice in one week - that was about 6 weeks ago. The last episode was because they found her laying under her bed, still dressed from the night before and she didn't know how she got there. Since then she tried to microwave a cup of soup for 3 hours & 45 minutes - fortunately someone came in to check on her and caught it before everything went up in flames. They removed her microwave (which Virginia then thought had been stolen) and I had them unplug her electric stove. Days after this, Virginia called me to tell me she was going to start driving again. I told her I didn't think that was a very good idea because she's been so unsteady and gets confused. She told me (I've heard this a number of times now) to stop making her "feel like a dummy." (Not to worry, she hasn't had keys to the car since she got lost for 6 hours on her way to visit Deb in the hospital - a straight shot, 5 miles down the road. She however doesn't realize I have the keys.) 

Because she usually went to the hospital on the monthly anniversaries (without realizing that was the date) I wasn't sure if she was maybe reacting physically to Deb's death (since she's a woman who shows very little emotion.) I also thought she might be screwing up her medications (which she was) so I hired someone to manage her meds. Virginia is also on kidney dialysis 3x a week and she's frequently very confused after dialysis, so I thought it might be a combination of all these things. And of course, there is dementia/alzheimers. 

Well, after her last hospital visit, the discharge papers listed the diagnosis as alzheimers. I talked to a social worker at the hospital (I am Virginia's durable power of attorney/patient advocate) who told me the diagnosis wasn't what was important, call it whatever you want, it was treating the symptoms that was most important.

Some days when I talk to Virginia she sounds pretty clear - I took her out on Mother's Day and she did very well, there was little confusion, she interacted with everyone, had opinions on current events, etc. 

One of her biggest symptoms, even on good days is that she can't come up with the right word (or any word) for things. Also, within the last 2 months she has become very unsteady on her feet and now needs a walker (which she does well with). She told me she always feels like she's going to fall flat on her face.

After the last hospital visit I added daily visits by supportive care. They come in to make sure she gets up in the morning and gets dressed, they check on her twice a day (besides their 3x medication dispensing), again at night to help her get ready for bed and then 2-3 times a week to help her shower. She was adamant she didn't need the care, I told her the hospital had ordered it until she was feeling better (not true, but I figured once theyt were there she'd get used to it and accept it.)

Virginia never had a general practitioner, so I made arrangements for that a few months ago - what a disaster! She didn't want to go, wouldn't let the doctor examiner her, told him I was lying, told him she saw her doctors on a regular basis and she was just fine (he could call them and ask), and was just all around p/o'd at me for doing that. After two more visits, with similar results, I gave up.

Deb has one brother, who is out of state and no help at all. In fact, I worry about him showing up because there will really be problems then! There are nieces and nephews but this is really on my shoulders. I had to take a lot of time off work last year caring for Deb and there have been major layoffs in my company so I'm concerned about losing my job if I'm forever taking time off to care for someone who isn't really family. 

I've asked doctors, nurses, nurse practitioners, the apartment complex management if she should be put in a nursing home and up to this point they've said they didn't think it was necessary. I'm afraid that (1) if I move her to a nursing home she will decline even faster - she has friends where she's at, participates in activities, etc and (2) that she'll just refuse to go.

I just got a call from the "home" (apartment complex manager) and when supportive care went in to give Virginia her pills this afternoon they found her sound asleep on the floor, outside of the bathroom. Again she didn't know how she got there and really didn't understand what was going on. They cleaned her up (she had wet herself), took her down to dinner and she has been fine.

I asked about a nursing home again and the manager is going to make arrangements for the facility nurse/doctor to come in and see her next week for an evaluation (hoping this will work better than my appointments with the general practitioner) and then decide from there whether she needs to be moved to a higher level facility. They have a building on the grounds that's not quite a full nursing home but has 24 hours care. In the meantime, they'll have someone check on her through the night and again tomorrow and then I'm taking her to dialysis on Monday (had not been my plan for the holiday, but oh well!) and talk to the nurses there. 

If Virginia had her way, I would be taking care of her 24/7. I'm having a hard enough time getting through my own days right now. Virginia was a handful when Deb was alive, now (...shudder)....

I don't know what the right thing is to do. (Darn that Deb, she promised me she wouldn't die before her mother!!!) Any suggestions?


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## Posh's Mom (Dec 20, 2007)

Jill you're an angel. I can't imagine doing this for my mother in-law if my husband died before me, but I guess I probably would...Meanwhile, I am not in your situation and I just can't imagine how much of a toll this is taking on you. 

My grandmother died of a brain tumor, and one of the biggest clues to her friends and family that something was wrong was that she kept forgetting basic words. She too felt dizzy. Has Virginia ever had a CT scan? Unfortunately, after my grandmother's diagnosis at 67 she was told she would have 6 weeks to live without chemo, 6 months to live with chemo. She chose no treatment and died just short of six weeks later. It was devastating for everyone to lose her that young.

It seems to me that you are honoring Deb by finding Virginia supportive, caring, and respectful caregivers and I hope there are people supporting you in these decisions, or maybe just inviting you over for a glass of wine and a bit of relaxation. 

Hugs to you. Keep us posted.


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## maryam187 (Jul 18, 2007)

Jill, boy oh boy what tough decisions on your poor little shoulders...it does sound like Alzheimer, however there is a complexity of demental diseases and it's hard to diagnose it in person much more so online. I hope the Doctors/evaluators will come up with a good plan for poor Virginia and poor you. You're a very kind person to deal with this situation the way you do. I've seen many children not giving a poop about their parents well being and just dump them in a facility. Very sad. As hard as it is, please remember that someone up there will be very appreciative and pay you back for all your heartbreak somehow...sometime...


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## Missy (Nov 6, 2006)

Jill, I don't have any advice-- Just want to give you a hug... And a Medal.


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## luv3havs (Jul 27, 2007)

Jill,

You are doing a wonderful job caring for Deb's mother. You sound like a very caring and giving person. Her family is fortunate in having you involved with Deb's mother.
I urge you to take good care of yourself through all this , so you don't burn yourself out.


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## irnfit (Nov 21, 2006)

Jill, sorry I can't offer you any advice. My 83 yr old mother lives with me, but I am very fortunate. She is still able to drive all over and is even going on a cruise to Alaska this summer. I will just keep you in my prayers and hope you find strength to deal with this.


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## mckennasedona (Feb 20, 2007)

Jill, you are a wonderful person to care so well and so deeply for Deb's mom. It sounds like she might be ready for a higher level of care. I can't imagine how disturbing it was to hear that she'd been found on the floor outside the bathroom and under her bed. Hugs to you!


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## Poornima (Jun 29, 2007)

I hope you find help and relief soon. Good luck to Virgina and you! :hug:s


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## Jill in Mich (Feb 24, 2008)

Thanks for all of the support. Organizing my thoughts and seeing them in writing, along with a good night's sleep, helped. I've just been putting off making a decision I've known was coming. 

Following her evaluation, if the doctor feels it's sufficient, I'm going to hire someone to spend the nights with Virginia. That way someone is checking on her every few hours during the day and then with her in case she falls at night. Even if it's only for a few months, that might be an easier transition than moving her out of her apartmennt and away from her friends right now. In case she already needs more care than that, I'm going to go to the 24-hour care facility tomorrow so I know what services they offer and get myself organized so I can get her transferred as smoothly as possible. 

I debated on whether to talk to Virginia now about what's going on or wait until I have all of the information and know what's going to happen. I have to take her to dialysis tomorrow so I think I'm going to go ahead and tell her what's going on. I'm not sure how much she'll understand but I think that's the only respectful thing to do. I know on her good day she feels like she's quickly losing her independence and control of her life - and she's right. Although I'm not sure it's possible, perhaps I can make this next life transition as easy as possible for her.

Thanks again.


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## Leslie (Feb 28, 2007)

Jill~ How are you doing? Are things going any better with Virginia? My DH's grandmother had Alzheimer's so, I know what you're going through. God bless you for taking such good care of her :hug:


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## Me&2Girls (May 11, 2007)

Jill, just wanted to chime in and say I think you are an angel and hope that things are going well for you.

For everyone that's dealing with an aging parent - hugs and good wishes to you too.


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## mckennasedona (Feb 20, 2007)

Jill, I've been thinking of you too. I hope your talk with Virginia went well and that she understands that you only want what is best for her.


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## Jill in Mich (Feb 24, 2008)

Leslie, thanks for checking in. Lisa and Susan, thanks for your concern and well wishes also.

It's not going very well but I guess that's to be expected. Leslie, as I'm sure sure you know, this is one of those things where nothing about it is easy. As tends to be my way, I go through a period of turmoil over what to do and whether or not I can handle it and then, finally, I find my peace and am able to take care of what needs to be done.

I did talk to Virginia. I didn't get any response at the time but I know she heard me and understood. Later she told me "About my situation....we aren't going to do anything right now." On her good days (which are fewer and farther between) she insists she is able to care for herself and refuses to have someone stay with her at night. She has also clearly told me she's not moving - not to be concerned, she feels safe in her apartment, she locks the door every night (NOT!) I took her to her primary care physician yesterday just to make sure that her meds didn't need adjusting and there wasn't anything more I should be doing. The doctor agreed she needs more care and recommended she have a MRI. When Virginia refused that he told me I was taking all of the appropriate steps I could.

I felt horrible when I went and visited the 24-hour care facility. It's just so sad to see all of the people suffering with dementia. Moving her there would be really hard and I'm sure she would decline even faster. On her bad days she wouldn't know the difference, but on those days when she is aware of what's going on, I'm sure it would be very depressing.

I thought I could leave her in her apartment and just get her private care, but once I sat down and really looked at her finances (knowing this could go on for years) that's just not practical.

So, I'm at the point of doing what I need to do to provide her with the best care possible while trying to make whatever transition as easy as possible, even if it's not what she wants. And as always, just rolling with the punches (and trying to protect myself legally and make sure I don't lose my job!)

Between this and Deb's death I've really been thinking about my own aging and who will take care of me.....so I've already made arrangements with my vet. Two little shots and she can just "put me down" when the time comes!


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## havaluv (Oct 15, 2007)

Jill, so many tough decisions. My only advice is to do your best to release any guilt you may feel during the process. You are doing the VERY best you can and so much more than many people would.

You are right, nothing about this is going to be easy. Sounds like you have come to terms with that and will be able to do what needs to be done with as much respect and kindness as you possibly can. That's all anyone could ask of you.

I suspect Virginia is not going to be happy with *any* changes. It seems to me that the most you can do for her is make the changes that need to happen and then do your best to comfort her and help her understand. She still won't be happy about them, but at least she has you to help her through it, if she'll let you.

After watching my Grandfather live with Alcheimerz for 8 years, I've come to the conclusion that I will buy long term care insurance when I reach my 50's. I know I never want to put anyone through what my grandmother went through trying to care for him. :hug: to you, you're an :angel:, Jill. I'll be praying for you in this very difficult situation.


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## Jill in Mich (Feb 24, 2008)

Well, my decisions have sort of been made for me. I had to take Virginia to the emergency room again last night (for the 8th time, on the 8 month anniversary of Deb's death) for chest pains and shortness of breath. It looks like it was probably just stress related (although they're checking for a blood clot in her lung). While she was there I asked for an evaluation of her functioning ability. I got a call this morning from the case manager who said she cannot live on her own and strongly recommended that I move her into a studio apartment in the 24 hour care facility. 

They are going to keep her in the hospital until Sunday. I have to go and pick out an apartment today and have scheduled a mover for tomorrow which means I have to get her things packed up today.:jaw:

She'll be moving from a 2-bedroom apartment to a studio apartment (to make her movements and need for remembering things as limited as possible) so I'm just going to move the furniture/belongings that will fit in the new apartment tomorrow and then deal with the rest at a later date.

That way, when I pick her up from the hospital I'll be taking her directly to her new apartment. They suggested I tell her this is temporary until she is feeling better to try and make the transition easier. (It's not really temporary, but if it works....)

She is NOT going to be happy with me!!!

My poor dogs. I worked yesterday, got home at 6:00pm, left again at 7pm to get Virginia, didn't get home until about 2am, and had to get up to go to work today. Cody is fine but Tess seems to be very upset - isn't eating, more skittish than usual, etc. :frusty:

Fortunately I can take them with me to Virginia's apartment and they can just hang out while I pack.

I'd appreciate your positive thoughts, but even more important if you could have a stiff drink in my name...it would help!


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## mckennasedona (Feb 20, 2007)

Jill, you got it. I'll have a drink for you tonight. I wish I lived closer, I'd help you pack. When my grandmother had to move into a studio, my aunt chose her very favorite things to go into it. I think they told her it was temporary also. She was probably further into dimentia than Virginia is. She thought she was back at her house because she had her favorite chair, many of the paintings from her home, pretty vases of flowers, etc. She became a bit of a klepto in her later years. If she saw something pretty in someone else's room she'd bring it back to her own room since she thought the whole place was hers. The aids would take the items back where they belonged. 
I hope, for your sake, that Virginia settles in after a awhile. You need a break! 

Hugs!


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## Havtahava (Aug 20, 2006)

Jill, this hits really close to home for me. My elderly grandmother is succumbing to Alzheimers too. She will have good days and seem to be almost normal and then is followed by several off days. One of the things I've had to learn to do is just be agreeable with her and not force her to do things. There is going to come a time soon when she is going to need full-time professional care, and unfortunately it sounds like Virginia has hit that first. Do they specialize in Alzheimers care there? With the rate she's going and the loss of Deb, it sounds like she may be headed to needing even more than assisted living.

Definitely let her believe it is temporary and just make it sound as nice as possible. Let her know that some other people are going to check in on her (if you think that will go over well) and inform her that she gets to bring some of her things to this new place, as if that were a perk. Whatever you do, it seems to work best to make everything cheery and agreeable with Alzheimers patients. I wish I could remember the full name of the book (or author), but there is a really good book that I think is called "Gentle Care" that is supposed to help family (and yes, you are definitely family to Virginia) deal with their loved ones with Alzheimers.

Bless you for helping Virginia so much.


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## Poornima (Jun 29, 2007)

Jill, sending you good wishes that all the arrangements work out and you get some time of your own. You are an :angel: :hug:s


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## Lina (Apr 26, 2007)

Jill, good luck moving all of Virginia's things. I hope she takes it well. You really are an angel. :hug:


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## MopTop Havanese (Sep 25, 2006)

I am so sorry for all that you have been thru. I know it's so hard to deal with somedays. I work in Assisted Care homes with Alzheimers and Dementia patents. So I see first hand just how cruel those diseases can be. It just seems so unfair sometimes.
I hope her tranisition goes smoothy~ wish I could help!


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## Miss Paige (Apr 4, 2008)

Jill:

The move sounds like the best thing that could happen for both you & Virginia. If there is any way to get an MRI done to check the deterioration that may have been caused by this medical condition that would be a really good idea. There are also test the dr can run to see how far she is in the decline.

Also I have two web-sites that you might be interested in-
www.adcaregiver.com 
www.alz.org
Please do not hesitate to go to either one-you will find others who are walking the same path you are right now with Virginia & others who have been where you are. Also on the www.alz.org site there is a nightly chat for caregivers to just come & talk to others.

You might also make sure they check Virginia for a UTI-that sometimes can cause symptoms much like Alz.

Good Luck in all you are doing for her-and be pepared for her children to come back into the picture at some point-not to help of course but make waves.

I also just checked and should you want to read about the different stages of Alz you can find that information on the alz web-site- Click on What is Alzheimers then click on stages.

Pat


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## irnfit (Nov 21, 2006)

Jill :grouphug: So sorry this is happening, but this is probably the best solution for you both. I've been through similar situations, and I feel for you.


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## ruthann (Jan 26, 2007)

You are one of God's angels on this earth. I pray for peace to come to you both with this move. May your Havs give you all the kisses you deserve. Ruthann


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## havaluv (Oct 15, 2007)

Oh Jill...I'm just catching up. 

As hard as this is, it's probably the best thing for both of you. I can't help you pack this weekend, but could help next week if you are doing any packing during the week...give me a call if you need me to come. 

:hug: ....hang in there, Jill.


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## JanB (Oct 26, 2007)

Jill, I just caught up on this thread. I am so sorry that this responsibility has been yours alone to bear. You are obviously a very kind and loving person and she is lucky to have you. I pray that the transition/move goes as smoothly as possible for her and you and that she gets the care she needs.

I too have been through similar situations. My DH is an only child so when his mother's health failed I was her caretaker and eventually saw her through her cancer diagnosis. My own mother was failing at the same time and again I was her sole caretaker. Juggling all the Dr visits and medical crises and just seeing to the activities of daily living for both was a challenge and extremely stressful. Between the two of them I packed up and moved them 4 times in 2 years. My MIL passed away and my mother is now in a wonderful home and I finally have some peace of mind. So I have some understanding of what you are going through and have such respect and admiration for anyone who is a caretaker. But to provide this care for someone who is not even a family member, well, that truly goes above and beyond. :hug:


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## mellowbo (Aug 12, 2007)

Jill, I too was the caretaker for my mom for 8 years and I know how exhausting it is. I just want to say that any feelings of anger, frustration, annoyance and impatience you may have are completely normal. It is a real hard job!
GOD BLESS YOU!!
:grouphug:


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## CapotesMom (Apr 3, 2007)

Oh Jill..I was just able to catch up a bit and read through what's been going on.. 

You poor dear! You must be so stressed out. My grandmother went through everything you're describing about 6 years ago. My dad was a reck taking care of her. It definately sounds like altzheimers. 

I think you're doing the right thing. Limiting her movements is probably best. The studio sounds like the right thing to do; less room to rattle around is less worry about what's going to happen to her. My grandmother declined quickly when she had to be moved to the nursing home but after she collapsed with weak heartbeat on thanksgiving, fell down the stairs, was found by the neighbors 2 blocks away not knowing where she was, and couldn't walk or talk, it was time. She got so bad there were days she didn't recognize you at all..an then days that when she did she'd just smile and somehow that was enough. It's so hard to go through this and to help even though it's not your own blood says a lot! You dear dear thing..it's going to be a long road but I know Deb would be appreciative of everything you're doing in her place. 

I wish you well and I'll be keeping you and Virginia in my thoughts.


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