Re: Noreen. Best wishes to you!

[Guest guest]

Dear Marilyn,

Thank you so much for your insightful comments. I appreciated reading them

very much.

Cindy

[Guest guest]

, You are kind. Marilyn

>

> Reply-To: shydrager

> Date: Sun, 24 Mar 2002 06:29:21 -0500

> To: shydrager

> Subject: Re: Noreen. Best wishes to you!

>

> Noreen:

>

> I believe I missed your message that stimulated this wonderful reply by

> Marilyn in TN. I can vouch for everything she said based on my own

> experience which is quite similar to Marilyn's. The only difference is

> that I could not have expressed as well as she did.

>

> God speed in your journey.

>

> Message: 17

> Date: Sat, 23 Mar 2002 18:12:04 -0600

>

> Subject: Re: Noreen. Best wishes to you!

>

>

> Noreen,

>

>

> This message is too long. I apologize before you begin.

>

>

> I like the others are very sorry that you must be with us on this list,

> but I can tell you that I have learned much from this group. There are many

> people here with different experiences and different opinions. I am a night

> person, so I have spent many a night reading these messages. In many cases,

> I have been able to see that something going on in our life was similar to

> events in the lives of others on this list and be relieved to just know that

> others are having similar experiences. My husband's symptoms have advanced

> fairly rapidly following his diagnosis, in 1998. Infact, the only way we

> can move him now is with a lift attached to the rafters of our home and a

> power wheel chair. We know that he had many of the symptoms for years prior

> to that diagnosis, though.

>

>

> We certainly are seeing that no two people are the same. I am sending

> you info about our family, but do not take us as the gospel. Who knows

> whether we are average or not.

>

>

>

> My husband is the MSA patient and I am the caregiver (Well, sometimes I

> wonder, if that is really true.). I am responding, because I see your need

> and that of your folks from a different perspective than you might. I hope

> my thoughts will be of help to you. I am 63 and my husband is to be 70 in

> April. Our sons are between 36-41 who are very caring, but also have very

> demanding jobs, plus wonderful families. In addition (but thank goodness)

> they want to spend lots of time with their own children/wives. We want them

> to do so.

>

>

> So we can see the strong " PULL " of emotions, physical needs, guidance

> and so on that comes from the parents who were 'smacked in the face with

> this illness' and all of the circumstances that go with it, plus the needs

> of our sons with growing, but young families. Our sons will do anything for

> us, but we do hate to ask them. I will say that in past few months, I am

> less hesitant to ask.

>

>

> I will include some ideas that I have written previously for others. I

> hope they will help you. My husband and I may be a little more/less needy

> that other families, because I had major coronary problems within the year

> following my husband's diagnosis (two heart attacks, angioplasty and finally

> four bypasses.Now congestive heart failure) I do not think that my health

> problems had anything to do with my husband's diagnosis. My problems are

> genetically oriented, but my weakened health has probably made me some more

> dependent upon my children than others may be.

>

>

>

> I would suggest to you. Don't leave it to your parent to tell you

> anything. He/she may want to but be unable emotionally/intellectually to

> tell/ask.

>

>

> 1. This is the most important gift that you can ever give your parents, but

> it takes time and commitment. Don't just say, " I love you " . Show them your

> love. You may have to make major changes is your lives today, but remember

> they made major changes in their lives when you needed them as an infant.

> That may be exactly what your ill parent has become, an infant.

>

>

> 2. No matter where you live or where they live, go to your mom and dad.

> Stay for a period of time. This trip leave your children at home. Neither

> you nor your parents need the distraction of children. Don't just drop in

> for an hour. Stay long enough to see what really is going on. Take things

> in your own hands, but remember they have a routine going. It will take

> time to change old habits. Some of those very things that you disliked the

> most in your home when you were a child may be the very things that they

> want to hold on to now. Remember it is their home, it is their life.

>

>

> 3. Make it a point to go with your parents to the doctor. It always helps

> to have more than one set of ears. Doctor's offices can be very stressful.

> Even though my husband and I are both of sound mind (we think), we sometimes

> hear two different things when we are at the doctor's. This happens for

> either one or both of us. If it is not possible for you to actually go with

> them, get written permission from your parents for the doctor to meet with

> you to discuss your parent's condition.

>

>

> 4. Make arrangements for you or your spouse to help your healthy parent

> care for your ill parent on a regular basis. If that is impossible find

> someone to help on a regular basis, whether they think they want the help or

> not. Find someone to clean house, cook a few meals, sit while your well

> parent runs errands, etc. Be sure it is going to happen week end and week

> out.

>

>

> 5. The most important thing your healthy parent needs is your support and

> love. He is already grieving for the loss of his/her ill spouse (as she has

> known him), the loss of his own life (as he knew it), and many other aspects

> of their life together. Your healthy parent may well be in a psychological

> shock without being able to recognize it. She may need some medical care

> herself.

>

>

> 6. Put all of your energies to loving your parents and showing that love to

> them in actions and not just words. Do all you can to make their life

> comfortable.

>

>

> 7. A young friend who was my employee prior to my retirement is dealing

> with her own parents. The mother has Parkinsons. The doctor has said to the

> dad that he must get away. His prescription for the spouse is to have

> outside help at least 8 hours a day, one weekend a month, and one week every

> two months. I¹m not sure that either my husband or I would ever be willing

> to this much time away from each other, but I am seeing the need for help.

>

>

> My thoughts come from the fact that the members of this list are mostly

> caretakers and patients. In most cases, we are not medical professionals.

> We all care for each other, but we also see that the illness is different in

> each case.

>

>

> I will be happy to discuss other issues if you like. Please know that I

> care for you and your parents. My thoughts and prayers are with all of our

> families each day. If you live anywhere close, I would be happy to meet

> with you or your parents.

>

>

>

> Best wishes to you on your journey.

>

>

> Marilyn in TN

>

>

> Sennewald Charlottesville, Virginia

>

>

>

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